tag:blogger.com,1999:blog-63752499138567441612024-02-18T19:11:47.475-08:00NF SAID!This site is a compilation of my thoughts, fears, experiences and efforts related to my son's diagnosis of neurofibromatosis and how I choose to acknowledge it. I also write occasionally about my oldest son's struggles with depression and addiction and his death as a result. I am a mother and I write to cope with the very difficult realities of life.Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.comBlogger28125tag:blogger.com,1999:blog-6375249913856744161.post-56339169133649388822022-02-18T15:49:00.002-08:002022-02-18T19:26:16.319-08:00Dear Potential Future Daughter-In-Law<p> </p><p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEjUhWSSXS1HGmbJ7Di9umYuhRD-L1IR9lyze7v-BFXkL0pm4GtSTUOB0yqhDYuZMOOWLRcxSu6sjGEEYH5wk1eJtezq7b0qdlRcRMuKcHP75bwULUe0mYQX9Sgq_T1sP2EfUTCrJB-_WdoYMHOc15RZ89Nc76-ZgolDgERDkwvaFGr5FRCtdYnrhFcOEg=s4032" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="4032" data-original-width="3024" height="400" src="https://blogger.googleusercontent.com/img/a/AVvXsEjUhWSSXS1HGmbJ7Di9umYuhRD-L1IR9lyze7v-BFXkL0pm4GtSTUOB0yqhDYuZMOOWLRcxSu6sjGEEYH5wk1eJtezq7b0qdlRcRMuKcHP75bwULUe0mYQX9Sgq_T1sP2EfUTCrJB-_WdoYMHOc15RZ89Nc76-ZgolDgERDkwvaFGr5FRCtdYnrhFcOEg=w300-h400" width="300" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"></td></tr></tbody></table><span style="font-size: x-large;">I</span><span style="font-size: large;"> was in the coffee shop today, sitting across the table from this handsome and earnest young man, when I was inspired to write this letter. We came to work on his resume and perfect his cover letter so that he could land that entry level position after completing his education and becoming a licensed Vet Tech last fall. We were surrounded by young women, sipping coffee, scrolling on their phones or typing on laptops, in groups of two and three, and each completely oblivious to the presence of this young man; the man of the dreams that they don't even fully understand right now. </span></p><p><span style="font-size: large;"><br /></span></p><p>Dear Potential Future Daughter-In-Law,</p><p>Find the nice guys. They are going to be the ones who you want to be with in the end, trust me. The bad boys may seem appealing now, but they will always be bad boys and they will hurt you, repeatedly. If you’re looking for someone to be in it for the long haul with, look for the young man who treats you respectfully and like the precious and beloved person you were raised to be.</p><p>He may be quiet or even socially awkward and he may not appear confident because of this. But chances are that he’s far more confident than the puffed up, arrogant, jackass who seems attractive to you right now. He will probably not even be the one to approach you first. He has far too much respect for you to think he’s even in your league. You may have to be the one to make the first move, but it will be worthwhile and you’ll always have that story to share at dinner parities and to tell to your future kids. </p><p>He will likely have deep affection for his parents and will value his family. This will make him the kind of father that you will want for your future kids. It doesn’t make him a mama’s boy, it makes him sensitive and connected, in a healthy way. The kid who is trash talking his parents and saying, “f@©k the establishment,” may seem weirdly radical and exciting in this moment, but believe me when I tell you that he’s not the man your future self will want making decisions that impact the well-being of your family. And his lack of respect for authority will eventually destroy every relationship he has. It will.</p><p>Talk to the understated young man who took the time and made the effort to better himself through education or training that would provide more income stability. He may not have much experience with dating because he was focused on his future for a while and he may not be flashy and able to sweep you off of your feet, but who told that you shouldn’t remain firmly on your feet in a relationship anyway? That other guy, the one who says all the "right things," who has been around the block a few times…it’s only a matter of time before he’s bored and he’s moving onto the next block and saying those things to another unsuspecting young lady. </p><p>Look for the guy who isn’t driving the fancy car or wearing the expensive clothing because he’s probably more concerned with saving his money and building his future than he is with appearing impressive. He’s the responsible one. He’s got a plan, and things like providing for a future family and buying a home are more important to him than they are to that pretty boy sitting behind the wheel of a flashy sports car. In fact, he’s probably even thought about things that seem so distant...like retirement and how to enable his wife to be home with their kids instead of at work and daycare, if that’s what she wants. And he’s spent time thinking of these important things before he’s even gotten a job or gone to school. He’s the guy you want in your life when you’re old and earned the right to be comfortable in life. He’s the one who won’t leave you alone to fend for yourself after you’ve given him everything of yourself.</p><p>Lastly, this guy, the respectful, kind, stable, and responsible young man I’ve been describing, he does not need you to be flashy and fake either. In fact, he doesn’t want you to be. He prefers the natural beauty that comes from being an empathic and genuinely caring person. He won’t be looking at the girls with their tight clothes and all their things popping out all over the place because he’ll only have eyes for you. He will be attracted to your honesty, your devotion, your kindness to others, to the things that make you a good person, not things that make you a trophy. But the funny thing is that you will feel like a trophy because he will cherish you and love you like you never imagined you deserved to be cherished and loved. And that will guarantee that I too will care for you deeply. We will be great friends!</p><p>With love,</p><p>Your Potential Future Mother-in-law</p><div><br /></div><br /><p></p>Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com0Fredericksburg, VA 22407, USA38.3056063 -77.58486649999999-35.130734779046541 141.79013350000002 90 63.04013350000001tag:blogger.com,1999:blog-6375249913856744161.post-48723647726416822132022-01-16T14:38:00.001-08:002022-01-16T16:55:51.148-08:00A Whole New World – Transitions<p><span style="font-family: inherit;"> Take a deep breath... hold 1, 2, 3...repeat</span></p><p><span style="font-family: inherit;">When your baby is born with a lifelong, progressive, genetic condition, you learn quickly, and often without realization, how to navigate the medical system. You become a strong advocate for your child and you find that you will stop at nothing to protect his interests. It becomes a part of your own identity, as it did for me. My son has neurofibromatosis, type 1 and I’m an NF Mom. Neither of those facts will ever change, however, once he became an “adult” in the eyes of the system, my role suddenly and swiftly, changed so completely. To clarify, my role shifted in respect to the system, but in my heart and in my brain, being his champion hasn’t changed one iota.</span></p><p><span style="font-family: inherit;">In our case, the changes were a bit delayed because his medical care was paused during the global pandemic. We had already made the decision to transition his care to the adult NF Clinic at Johns Hopkins in Baltimore, MD prior to the start of the pandemic. We loved his team at Children’s National Medical Center and he had great care there, but at some point, being in a room with cartoon characters on the walls and waiting areas filled with young children limited his ability to feel grown-up. They would have continued to see him there for many years, which we were grateful for. I’ve heard others’ horror stories about being cut off suddenly at the age of 18 and scrambling to find alternative care. We feel fortunate to be relatively close to an adult center of care and saw the opportunity to establish him as a patient there just as the world hit the pause button and maintenance care slowed to a halt. When things started to reopen, our emerging adult was navigating the final phase of his education with a hybrid model of online lectures and in-person labs. He was focused on his goal of graduating as a licensed Veterinary Technician and because of NF, that was enough at that moment. With NF-related learning challenges in addition to the adjustment to online learning and finding his way while living apart from his family during the everchanging pandemic landscape, his hands were full. Because it’s important with NF to have regular check-ins due to the progressive nature of the disorder, this meant that he would have some catching up to do after graduation.</span></p><p><span style="font-family: inherit;"><br /></span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEiS0M68XnAf1fTWG0mYZXUd19E26afeYycEMQJejyFfdmVFi-IzDXbJuYiDo0SAQQAnkRpzkj4YcHZebVvWpRWXZYC4JMk2qEmg6uWyqz6mV9DsiJ0SdPDVNXasIe8JjKMR3y4V42VRpoW00EFerfjW0WaAaEHrPqAw6OFz-1mVRYc9TbC5EtdaNvj0WQ=s3060" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="3060" data-original-width="3001" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEiS0M68XnAf1fTWG0mYZXUd19E26afeYycEMQJejyFfdmVFi-IzDXbJuYiDo0SAQQAnkRpzkj4YcHZebVvWpRWXZYC4JMk2qEmg6uWyqz6mV9DsiJ0SdPDVNXasIe8JjKMR3y4V42VRpoW00EFerfjW0WaAaEHrPqAw6OFz-1mVRYc9TbC5EtdaNvj0WQ=s320" width="314" /></a></div><p></p><p><span style="font-family: inherit;">Despite every obstacle thrown his way, he did in fact achieve graduation and just a few months later, he passed his licensing exam to become a certified LVT! And without a moment’s rest, he began the process of managing his own care, with so much to coordinate at an out-of-town facility. Without hesitation, he rose to the challenge and mostly independently started transferring records, scheduling appointments, setting up MyChart, and getting the ball rolling for his transition. Of course, he had questions, needed input based on my ability to transport him, and on occasion, put me on speakerphone with someone who was impeding the process. He was learning and I quickly realized he’d been learning all along, I just hadn’t seen it clearly. I started to recall times when he’d truly been his own advocate and understood that he’d picked a few things up along the way. Understandably, twenty-four years of care had prepared him for this day.</span></p><p><span style="font-family: inherit;">I remember a time when the pediatrician had noticed something night quite right, which resulted in a visit to the urologist. At the time, we lived in a city that did not have an NF Clinic and we had to see someone without much experience in the world of neurofibromatosis. The provider examined him and fumbled through the appointment, bringing in a few of his colleagues to provide their opinions while subjecting, a then pre-teen boy to some pretty humbling stuff with his mom sitting just on the other side of a curtain. When the examination was finished and I’d rejoined them, said provider proceeded to reach out to shake my son’s hand. Without taking a breath, the immediate response to this was, “Aren’t you going to wash your hands?” After he washed up and regained his composure, the doctor began to explain what the next steps should be and outlined a plan for exploratory surgery. At just 12 years old, my son listened respectfully and then asked, “Don’t you think we should do an ultrasound or something before we think about surgery?” Bravo, young man! You were indeed learning how to self-advocate all along and here were two powerful examples of that!</span></p><p><span style="font-family: inherit;">Within a short period of time, this incredible, resilient, remarkable young man had a visit with the clinic coordinator scheduled and afterward proceeded to schedule 4 MRIs, an ultrasound, and set up new patient appointments with a plastic surgeon, neurologist, geneticist, and a neuro-ophthalmologist. It wasn’t easy and there were a few that needed to be rescheduled. He had to learn about things like how many days apart you need to schedule scans with contrast and how many areas can be included in one scan, but he dove in and he got it all done. This was a huge step forward in his transition to adulthood and adult care and he surpassed my expectations. </span></p><p><span style="font-family: inherit;">After the consultation appointments, there was additional follow-up, which he also managed on his own. He scheduled surgery to remove several dermal tumors before they could get any larger and as a result had to coordinate a pre-op visit and a COVID-19 PCR test. In addition, he reviewed and consented to take part in a full-body MRI study for early detection of MPNST. And he’s since had to schedule and reschedule follow-up scans as well as the surgery date and PCR test date. Surgery day was the icing on the cake for this new world of transition.</span></p><p><span style="font-family: inherit;">We drove up to Baltimore a few days before so that the COVID testing could be done at a Johns Hopkins facility. The day before he was to report to the outpatient surgical center, he received a call from one of the staff to review the instructions and preparation. He put the phone on speaker and let the nurse know that his mom was also there. She asked a few questions, which he answered, and then she asked which part of his body would be operated on. He stumbled a little and I pitched in, to which the nurse said, “I’d prefer to hear directly from the patient when possible.” Well okay then. Touché and thank you for your insensitivity by putting this fragile, feeling-a-little-less-relevant mother of a 24-year-old on notice. In hindsight though, that was good preparation for what was to come on surgery day. </span></p><p><span style="font-family: inherit;"><br /></span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgw_WMlr6MO6JOMR-RyEenl8YsgNZbquwrT98_aTh3mYDeocp9f5ptbcDTXRKN28XDIouO3xaj4BJh5UuDS1SIL8idExjfRd5cyuhBF62UhUKteG6N8ttqSMf2urR7l6snVOzk0L3zTlVzbAllDkCjxLl-w69uo7AshQR4WnWM-PIcsAZVC0OXYyZwxAA=s1440" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1440" data-original-width="1440" height="400" src="https://blogger.googleusercontent.com/img/a/AVvXsEgw_WMlr6MO6JOMR-RyEenl8YsgNZbquwrT98_aTh3mYDeocp9f5ptbcDTXRKN28XDIouO3xaj4BJh5UuDS1SIL8idExjfRd5cyuhBF62UhUKteG6N8ttqSMf2urR7l6snVOzk0L3zTlVzbAllDkCjxLl-w69uo7AshQR4WnWM-PIcsAZVC0OXYyZwxAA=w400-h400" width="400" /></a></div><p></p><p><span style="font-family: inherit;">The reality was that because of COVID and surging cases everywhere, the surgery center waiting room was closed. They were not permitting adult patients to have anyone with them during procedures. This meant that I would have to drop my son off and drive away to wait it out...offsite...alone. I went directly to my social media for support: </span></p><p><span style="font-family: inherit;">"What a strange feeling after a lifetime of being his advocate/his champion and holding his hand through every appointment, every scan, every procedure, every surgery. Today is surgery day and this young man is practicing his independence, maybe a little more quickly than he would have in our pre-COVID world. He was so brave and flashed that famous smile of his to reassure ME just as he turned to go inside…alone. I blinked and the tables turned. I’m currently processing all of the feelings that go with this transition, and there are so many.”</span></p><div style="text-align: left;"><span style="font-family: inherit;">And then I started writing this blog. Granted, I’m finishing it a few days afterward, but blogging is my way of processing and coping with the conflicting emotions of being less relevant in my role as his caretaker and being so incredibly proud of the man that my child has become. One of my very inspiring friends, someone who has been to Hell and back, responded to my social media post with, “I'm so sorry you have to experience this.......and even more sorry for Jesse. But he is so brave! So full of strength and life! You helped cultivate that. You have to feel pride and joy somewhere under the fear and darkness.” Which is exactly what I needed to hear at that moment. I had indeed prepared him for this day and in the process, I’d prepared myself too. My role may have changed, but I am prepared to champion him and his cause for all of eternity. This leg of the journey is a little uncomfortable because it’s unfamiliar territory, yet I have a feeling that the pride I feel in his ability to handle everything that comes his way is what is going to get me through this and everything else that follows.</span></div><div><span style="font-family: inherit;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: inherit;"><br /></span></div><br /><p></p>Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com8tag:blogger.com,1999:blog-6375249913856744161.post-87176537878416034212020-04-12T10:44:00.002-07:002020-04-14T15:12:32.424-07:00The Time is Now for NF<div class="MsoNormal" style="font-family: Calibri, sans-serif; font-size: 12pt; margin: 0in 0in 0.0001pt;">
<span style="font-family: "verdana" , sans-serif; font-size: 13.5pt;"><br />Here I sit, basking in the glory of something monumental, which has overwhelmingly moved me to write once again after a 2-year hiatus. Friday was a huge day in history for patients living with neurofibromatosis, like my son, Jesse (who is 22 years old now). In the midst of the COVID-19 pandemic, with all of the closed doors that come along with social distancing, quarantines, working from home, home schooling, furloughs, and toilet paper shortages, a pivotal door was opened that will change things for the NF community for the rest of time. On Friday, April 10, 2020 the Federal Drug Administration (FDA) approved Koselugo (Selumetinib) as the first ever treatment for NF patients. This means that never again will a parent of a newly diagnosed child be struck by the words, no treatments, no cure. Now there is a treatment and forever more NF will be among the 5% of rare diseases which can make this claim. This is big and although it feels like the end of a long and winding road, it is truly just the beginning of greater things to come. The progression of research initiatives, such as targeted therapy clinical trials for NF1, NF2 and Schwannomatosis, gene therapies and biomarkers, are exactly what’s coming and all require more research dollars than ever. Now is the time to take action and invest heavily in our children's futures.</span><span style="font-family: "times"; font-size: 13.5pt;"><o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: 13.5pt;">There are explanations for why 95% of the more than 7000 different rare diseases do not have a single FDA approved treatment. The most likely being that rare diseases, those with fewer than 200,000 patients in the US, often lack the interest and attention of researchers and pharmaceutical companies. First, they don't affect as many people, which means there won't be as great a demand for the drug (i.e. there's less money in it for them). Secondly, many rare diseases are biologically complex and include multiple diverse manifestations, which makes them difficult to study effectively. Not to mention the fact that the lower number of individuals with specific presentations makes it a challenge to recruit patients for clinical trials. These factors make them less attractive, however, they are no less important and no less worthy of research. It was largely because of this that President Reagan signed the Orphan Drug Act into effect in 1983, which provides incentives to drug companies and researchers willing to study them; a bold move that made a difference.</span><span style="font-family: "times"; font-size: 13.5pt;"><o:p></o:p></span></div>
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<tr><td class="tr-caption" style="text-align: center;">Young NF patients speak to the FDA about what it's like to live with NF (2019)</td></tr>
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<span style="font-family: "times"; font-size: 13.5pt;"><br /><span style="font-family: "verdana" , sans-serif; font-size: 13.5pt;">The foundations and organizations that represent these disease groups, like the Children's Tumor Foundation, are often small, underfunded, and under recognized, yet fortified with creative and strongly invested, passionate leadership, volunteers, donors, and staff. Whatever it is that motivates the people who work for and with rare disease organizations, it is indescribably powerful. It has to be in order for there to be any kind of progress. Annette Bakker, the President of the Children's Tumor Foundation is a true visionary who has made it her life's ambition to cure NF. It had only been a few months into her reign as President of CTF when she stood on the podium of a patient and family gathering and declared, "I'm going to save your children." It was a courageous statement indeed. It brought tears to my eyes. Likewise many in that room were equally moved. We believed her. We needed to have that kind of hope. Many since have placed unwavering trust in her ability to lead us to a day when there will be many options for treatment and ultimately a cure for NF. When she called a last-minute staff meeting earlier this week, as a sign of the times, Annette shared the news we'd all been waiting to hear from the little box in a zoom meeting. She became emotional and so filled with gratitude for the entire community who brought us to this day; staff, researchers, clinicians, patients, volunteers and donors. Her humility and strong leadership continue to inspire me, not because she's my boss, but because she's the real deal. She delivers on her promises.</span></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: 13.5pt;">Now we have our first big win, an effective treatment for NF1 patients. So what's next? There are currently close to 70 drugs in the pipeline for all three types of NF, many of which have had promising early results. Neurofibromatosis is now a player on the major league field and no longer resigned to sitting on the bench. Now is the time for things to really get interesting. Now is the start of a whole new challenge. Will all of the research get funded or will unfunded research be left on the table? The COVID-19 pandemic has presented a challenge to revenue for CTF as it has for most small non-profit foundations. However, now is when we are going to need that revenue more than ever. Every single person who has been affected by NF or who has access to funders with an interest in research minded causes needs to get behind this success with substantial commitment. We need to position ourselves and be ready for the next opportunity and the next one after that. This approval will be a catalyst for great things to come. Get ready, gather your resources, share your connections, and dust off your party shoes, the times they are a changing! Together we WILL end NF.</span><span style="font-family: "times"; font-size: 13.5pt;"><o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: 13.5pt;">More info:</span></h3>
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<li><span style="font-family: "verdana" , sans-serif;"><a href="http://ctf.org/mek">ctf.org/mek</a></span></li>
<li><span style="font-family: "verdana" , sans-serif;"><a href="https://www.ctf.org/news/fda-approves-first-ever-treatment-for-nf" target="_blank">FDA Approves First Ever Treatment for Neurofibromatosis</a></span></li>
<li><a href="https://www.ctf.org/images/uploads/documents/FAQ_-_FDA_Approval_of_Selumetinib_FINAL_(1).pdf" target="_blank">FAQ- Koselugo (selumetinib) FDA Approval</a></li>
<li><span style="font-family: "verdana" , sans-serif;"><a href="https://www.fda.gov/news-events/press-announcements/fda-approves-first-therapy-children-debilitating-and-disfiguring-rare-disease" target="_blank">FDA Approves First Therapy for Children with Debilitating and Disfiguring Rare Disease</a></span></li>
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Pronunciation of Koselugo: <i style="color: #222222; font-family: Arial, Helvetica, sans-serif;">co-sell-you-go </i>(you'll recognize the 'selu' from 'selumetinib' in this new name 'ko<b style="color: #222222; font-family: Arial, Helvetica, sans-serif;">selu</b><span style="background-color: white; color: #222222; font-family: "arial" , "helvetica" , sans-serif;">go')</span></div>
Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com10tag:blogger.com,1999:blog-6375249913856744161.post-19373639663221179092018-06-13T20:50:00.000-07:002018-06-13T20:50:12.886-07:00Big Steps, Small Victories<span style="font-family: Arial, Helvetica, sans-serif;">From the moment a baby is born, we begin the preparations that will gradually, over the following 18-21 years, if we did our job well, lead to adult independence. When the baby is diagnosed with a neurologic genetic disorder and the list of possible manifestations includes some pretty scary stuff, the normal course of events naturally gets cloudy. For many years, I did not know that my son would ever become an independent adult. Today, I waved from the front porch as he nervously drove down the driveway toward his first rented space away from home, a very big step. When he was out of view, I went inside and melted into a puddle of tears and uncertainty on the foyer floor.</span><div>
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<span style="font-family: Arial, Helvetica, sans-serif;">He was just 6 months old when the neurologist confirmed the neurofibromatosis diagnosis. I was told to take my baby home and love him and enjoy him. He said, "Don't search it on the internet. You won't like what you see." There were no treatments and there was certainly no cure, so the only option was to watch for changes and wait for symptoms. He even sent me a packet of information with a note taped to the front page, which let me know that there would be no purpose in actually reading any of it because it wouldn't change the outcomes, it would only cause me more worry. He didn't tell me what to watch for and he didn't mention how long we would have to wait. I actually did not read the packet of information, I tucked it into a drawer and left it there, but I found a pamphlet inside from the National Neurofibromatosis Foundation (NNFF, now Children's Tumor Foundation) so I visited their website and found our community.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The first 3 years of his life were a blur of missed milestones, evaluations and therapists. NF not only causes tumors, deformities, chronic pain, deafness, blindness and increased risk of cancer, but 60% of the cases come with the added bonus of learning disabilities and developmental delays. Our only power was in our ability to be proactive about his learning and do everything we could to stack the odds in his favor. Therapists came to our home for the first 18 months and he began in a developmental preschool by age 2. From then on, he went to school, on a bus, 5 days a week and received physical therapy, speech and language therapy and occupational therapy as well as small group instruction. He continued to have regular therapies and specialized education throughout his school career right up until 12th grade graduation. He had 12 month programming for many of those years and the evidence of success came through the school reports which documented progress. He didn't spend his summers learning sports or enjoying sleep away camps, he spent them cementing his learning and struggling against regression. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Does that mean our son missed out on being a kid? In some ways he did, but we found balance. We searched out creative solutions and found summer schools where he could spend half the day in a YMCA camp with extra support, signed him up for adaptive sports teams, put a swimming pool in our backyard and played outdoors as a family. From age 12 through 16, he even flew solo, cross country, each summer to spend a week in summer camp with other kids who shared his lot in life. His childhood was as normal as it could be without sacrificing his potential. The goal was to give him every opportunity to have a fulfilled and autonomous adulthood in which he could provide for himself (and a family down the road). And now here we are, in yet another of those big moments which lead to small victories.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Tonight is the first night that this almost 21 year old man will sleep in a rented room and practice his <br />self-sufficiency. We did right by him. He may not have had the same experience as other boys along the way, but the other boys were not on the same playing field he was on. His life was fraught with extra challenges and he overcame them. We watched for changes and we waited for symptoms, but we didn't stop fighting while we did it; we fought harder. We surrounded our son with a community of people who understand him so that he would never feel alone or different and we found ourselves a family.</span><div>
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<span style="font-family: Arial, Helvetica, sans-serif;">My tears of uncertainty as he rounded the bend earlier today are not for lack of confidence that he will do well. I've seen what he can do. My fears and my ambivalence are grounded in how the world will treat him without my watchful eye to protect him. I'm just going to have to trust that we did all we needed to do to equip him to fend for himself. I will put my faith in his ability to figure out whatever we missed and to know that he has our support and love every step of the way.</span><div>
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Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com0tag:blogger.com,1999:blog-6375249913856744161.post-2466666836986478662017-05-03T08:55:00.000-07:002017-05-13T13:24:46.983-07:00Ending NF: What does it mean?<div style="border-bottom: solid #4F81BD 1.0pt; border: none; mso-border-bottom-themecolor: accent1; mso-element: para-border-div; padding: 0in 0in 4.0pt 0in;">
<span style="font-family: Arial, Helvetica, sans-serif;">I was honored to be invited to submit an article for the Spring 2017 edition of Inspire Magazine from The Tumour Foundation of BC (formerly known as BCNF) about what Ending NF means to me. You can find the magazine here: <a href="http://www.tumourfoundation.ca/wp-content/uploads/pdf/InspireMag-Issue05-109-Web.pdf">!</a><a href="http://www.tumourfoundation.ca/wp-content/uploads/pdf/InspireMag-Issue05-109-Web.pdf">NSP!RE</a></span><br /><div class="MsoTitle">
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<span style="font-size: 26pt; letter-spacing: 0.25pt;">Ending NF: What does it mean?</span></div>
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By Connie Sorman<o:p></o:p></div>
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<span style="color: #666666; font-family: Arial, Helvetica, sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">When I stop to think about what it would mean to End NF, the thoughts get tangled as they intertwine in their complexities.<span style="mso-spacerun: yes;"> </span>Does Ending NF mean that there would no longer be people diagnosed and living with the disorder? Does it simply mean that there would be an array of effective and safe treatments, which would make the many different manifestations of NF manageable? Maybe the meaning would encompass the ability to stop tumors from growing in the first place—genetic modification. Or perhaps, Ending NF would be ending the stigma and the lack of knowledge surrounding the disorder, making NF as known in the public eye as MS or MD or Diabetes and those living with NF would feel valued and validated by society. It would mean that nobody lives with NF in isolation and that there would be many choices for well-informed physicians to treat NF patients and approved treatments to provide to them.<o:p></o:p></span></div>
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<span style="color: #666666; font-family: Arial, Helvetica, sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">I don’t know what End NF means to anyone else, but I’m not very literal in my interpretation. What I have chosen to fight for, as the mother of a child, now grown to be a young man, is to end stigma, increase knowledge, educate others, spread awareness and provide support to those living with the disorder. In addition, I advocate for research funding, I do what I can to raise money on my own and I volunteer. <span style="mso-spacerun: yes;"> </span>While I hope that one day there will no longer be people living with NF, I am realistic enough to understand that this is unlikely to happen in my son’s lifetime. Having said that, it thrills me to know how far the research has come in the 19 years since his diagnosis.<span style="mso-spacerun: yes;"> </span>The first time I heard the name, Neurofibromatosis, my son was an infant, just 3 months old. At that time, not only were there no treatments, but there were also no clinical trials yet identified for potential treatments.<span style="mso-spacerun: yes;"> </span>I remember hearing of the very first trial that showed promise in mouse models and I dug up whatever I could find to fuel my hope that learning disabilities, my son’s most prevalent manifestation at that time, could actually be reversed.<span style="mso-spacerun: yes;"> </span>He was too young to participate in the trial at first, but as soon as he was able, he did.<span style="mso-spacerun: yes;"> </span>Although the research is ongoing for that particular study after 10 years, I still have optimism about it and it holds a special place for us because he was a part of its history.<o:p></o:p></span></div>
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<span style="color: #666666; font-family: Arial, Helvetica, sans-serif;"><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">Today there are many studies for a variety of different symptoms related to the three types of NF. Scientists are working together for the first time in NF history through clinical consortium and Synodos efforts to collaborate on </span><span style="background: #fefefe;">interdisciplinary, multi-institutional, translational research. There are drugs showing significant tumor <span style="text-transform: uppercase;">shrinkage</span> and are very promising to be offered as approved clinical treatments in NF1 in the foreseeable future.<span style="mso-spacerun: yes;"> </span>There are medicines that are <span style="text-transform: uppercase;">reversing</span> hearing loss in NF2 patients.<span style="mso-spacerun: yes;"> </span>We have the science, the researchers, consistent funding, passion, enthusiasm and incredible hope among us.<span style="mso-spacerun: yes;"> </span>We have the ability to End NF and we will. The progress is quite remarkable and for the first time since 1882 when </span><span style="background: white;">Friederich Daniel Von Recklinghausen recognized NF by describing two cases of multiple neurofibromatosi</span><span style="background: white;">s</span></span><span style="background: white;"><span style="color: #666666; font-family: Arial, Helvetica, sans-serif;">, we are on the brink of Ending NF in the very real sense that will most directly impact those who are living with it every single day.</span><span style="font-family: calibri;"><o:p></o:p></span></span></div>
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<span style="background: white; color: black; font-family: "calibri";">What are you doing to End NF? Here are some suggestions:<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="color: black; font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><b style="mso-bidi-font-weight: normal;"><span style="background: white; color: black; font-family: "calibri";">Join the NF Registry!</span></b><span style="background: white; color: black; font-family: "calibri";"> Go to </span><a href="http://www.nfregistry.org/"><span style="background: white; font-family: "calibri";">www.NFregistry.org</span></a><span style="background: white; color: black; font-family: "calibri";"> and register every member of your family who has been diagnosed with NF.<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="color: black; font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><b style="mso-bidi-font-weight: normal;"><span style="background: white; color: black; font-family: "calibri";">Volunteer </span></b><span style="background: white; color: black; font-family: "calibri";">at a local event, symposium, NF clinic or create your own fundraising event. Go to </span><a href="http://www.ctf.org/getinvolved"><span style="background: white; font-family: "calibri";">www.ctf.org</span></a><span style="background: white; color: black; font-family: "calibri";"> to find resources, ideas and opportunities.<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="color: black; font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><b style="mso-bidi-font-weight: normal;"><span style="background: white; color: black; font-family: "calibri";">Spread Awareness! </span></b><span style="background: white; color: black; font-family: "calibri";">Wear an NF shirt or wrist band, ask your government to recognize May as </span><a href="http://www.ctf.org/get-involved/nf-awareness-month"><span style="background: white; font-family: "calibri";">NF Awareness Month</span></a><span style="background: white; color: black; font-family: "calibri";">, get buildings, monuments or bridges to </span><span style="background: white; font-family: "calibri";">“Shine a Light” on NF<span style="color: black;"> in May. <b style="mso-bidi-font-weight: normal;"><o:p></o:p></b></span></span></div>
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Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com0tag:blogger.com,1999:blog-6375249913856744161.post-72308291244540972502017-04-27T08:25:00.000-07:002017-04-27T08:29:50.569-07:00Gone<span style="font-family: "helvetica neue", arial, helvetica, sans-serif;">Gone worry, anxiety, fear’s ache.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: small;">Gone past struggles, deceptive pain.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;">Brandon’s Mom<o:p></o:p></span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;">Connie Sorman</span><span style="font-family: "avenir book";"><o:p></o:p></span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: small;">In memory: Brandon Roat, 2.2.1992 ~ 2.13.2017<o:p></o:p></span></div>
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Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com4tag:blogger.com,1999:blog-6375249913856744161.post-33165879954595240192017-04-08T07:43:00.001-07:002017-06-17T06:41:42.035-07:00Before There Was You<span style="font-family: "verdana" , sans-serif;">There are many twists and turns in life; aspects which seemingly have nothing what-so-ever to do with who we are in every other regard. The truth is that all parts of our lives are what create our identities and all experiences shape us. If someone had told me, at 25, that addiction would one day shatter my world, I wouldn't have believed them. I'd have stared at them in horror. If they would have told me that a genetic disorder, which I couldn't even pronounce, would become a focus in my life, I'm not sure I would have fully understood what that meant at that moment in time.</span><br />
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<span style="font-family: "verdana" , sans-serif;">When I became a brand new mother at the age of 26, life, as I'd known it previously, was no longer. It was a wonderful new normal to be a mother and have a family and it thoroughly changed me for the better. The maternal instinct was strong within me throughout my life and this one event completed me. I was blessed to be given this precious gift of motherhood </span><span style="font-family: "verdana" , sans-serif;">subsequently, </span><span style="font-family: "verdana" , sans-serif;">three more times.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">When they place that newborn on your chest in the delivery room, they don't tell you about all of the possibilities to come. They don't warn you about heartache. I suppose that would not be the time and place for that. Truthfully, nobody ever prepares you for the worst; those are just events that happen to us and we are forced to face them, unprepared, when they do.</span></div>
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">As most mothers do, I had hopes and dreams for my first-born child, for all of my children, but different hopes and different dreams for each of them. This child would go far in life and he would conquer the world with his gifts and talents! Turns out that his path was different than what I'd imagined it would be. Coming to terms with that and fully accepting it will mean that I have another new normal to embrace...that, for me, is the most difficult part of grief of all.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I wrote this poem for my first son and for all of the parents (most especially the mothers), who are forced to live with a new normal that they were not prepared for in advance. If you replace some of the words, the poem is relevant to many situations that did not turn out the way you'd expected them to. I've faced this reality twice, with both of my sons; one with addiction and the other with neurofibromatosis.</span><br />
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">Before there was you,<o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">I never knew,<o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">That love could be so selfless and so pure. <o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">The fierce protector inside me; knowing no bounds for the lengths I could go to keep you safe. <o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">That being your Mommy would give me infinite purpose; nothing I'd been, nothing I'd done before, had any meaning at all. <o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">The capacity in my heart to treasure another person's life, above all others, unconditionally. <o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">Before there was you,<o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">I never knew,<o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">That pride could taste of the sweetest fruit, yet prevent me the ability to swallow. <o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">That my breath could be stolen by your every accomplishment and the wind knocked from my sails by your every defeat. <o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">That my melting point consisted of your smile and your frown equally, yet without similarity.<o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">Before there was you,<o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">I never knew,<o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">How intertwined joy and sorrow could be. <o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">That my love would not be enough to save you from your demons.<o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">That immense promise lay in your courage and complete despair in your choices.<o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">That my ability to hold tenaciously to hope would arise from you losing yours. <o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">That I could want more for you than you seemed to want for yourself. <o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">Before there was you, <o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">I never knew,<o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">That someone who was so deeply loved could be devoured by perceived pain. <o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">That your mind could be ravaged so completely by a substance that you could no longer recall my love. <o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">Before there was you,<o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">I never knew,<o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">The agony in helplessness and the conflict of being unable to shield my child.<o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">The many sleepless nights of unimagined fear; unaware if you were cold, hungry, safe or…alive. <o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">The anguish and heartbreak that comes with having to refuse your child's appeals. <o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">The compelling necessity for belief in a higher power. <o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">I never knew,<o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">That I could survive the horror of your addiction, when you would not. <o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">That the gaping hole, left by losing you, would prevent me from ever again living life like the one I knew,<o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">Before there was you.<o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">~Connie Sorman<o:p></o:p></span></div>
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<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">Dedicated to my B-loved son, Brandon, 2/2/1992 to 2/13/2017<o:p></o:p></span><br />
<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;"><br /></span>
<span style="font-family: "avenir book"; mso-bidi-font-family: Helvetica;">Brandon Stephen Roat, Obituary and Eulogy: <a href="http://nfsaid.blogspot.com/p/brandon-stephen-roats-memory-page.html">http://nfsaid.blogspot.com/p/brandon-stephen-roats-memory-page.html</a></span></div>
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Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com2tag:blogger.com,1999:blog-6375249913856744161.post-62155845535970156362016-08-19T18:19:00.000-07:002016-08-19T18:19:58.211-07:00Things You Might Be Surprised to Know About Me – The Activist Mom<div style="text-align: justify;">
<span style="font-family: "Century Gothic";"><span style="font-size: x-large;">I</span>t is that time of year again, Walk season. Every year, just as the summer winds down, days start getting a little shorter, nights get cooler and everyone else is buying new shoes, pencils and backpacks to go back to school, I enter Walk-mode.</span></div>
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<span style="font-family: "Century Gothic";">Walk-mode has varied for me over the years. I’ve evolved from the passionate, yet sometimes irrational lady that people would cross the street to avoid because I was likely to assault them with a contribution shakedown. In those days, I was pounding the pavement night and day searching out raffle prizes, sponsorships, volunteers to man the food table, food donations, media contacts, and anyone in the business of entertaining children with balloons, face paint or crafts.<span style="mso-spacerun: yes;"> </span>I was a walk organizer. In those days, I was also a pursuer of funds, although my focus on this was less intense. Without which, my walk would be a fantastic community building event, also very important in and of itself, but it would not be responsible for putting a drug in a clinical trial or for funding a grant to provide much-needed research.<o:p></o:p></span></div>
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<span style="font-family: "Century Gothic";">These days, due to other charitable responsibilities that I’ve assumed over time, I am mostly the former-the pursuer. This often puts me in the awkward position of feeling unpopular and obtrusive.<o:p></o:p></span></div>
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<span style="font-family: "Century Gothic";">If you have met me, or someone else like me; the person you’ve exclaimed to be a Super Mom, a go-getter, someone of extraordinary strength and abilities…You may be surprised to know these things about me:<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="font-family: "Century Gothic"; mso-bidi-font-family: "Century Gothic"; mso-fareast-font-family: "Century Gothic";"><span style="mso-list: Ignore;">1.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: "Century Gothic";">I’m shy at heart.</span></i></b><span style="font-family: "Century Gothic";"> I was born a shy person. I was the quiet kid in school who often didn’t raise her hand or want to be noticed.<span style="mso-spacerun: yes;"> </span>Focused attention was painful for me. This all changed when my child was diagnosed. It didn’t happen in a flash of profound awareness. It happened gradually. As my child had more struggles to face, more obstacles to overcome, I became more vocal.<span style="mso-spacerun: yes;"> </span>Little by little, I emerged as the person you see doing television news interviews, visiting my Senator’s offices on the Hill or standing on a podium addressing a crowd of people, all the while praying that someone will hear the terror in my voice, will know the sincerity of my message. I may make it look easy, but it is still grueling.<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="font-family: "Century Gothic"; mso-bidi-font-family: "Century Gothic"; mso-fareast-font-family: "Century Gothic";"><span style="mso-list: Ignore;">2.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: "Century Gothic";">Asking you to give your hard earned money to my cause is agonizing. </span></i></b><span style="font-family: "Century Gothic";">I know how you labor for your money. I know how tight a family budget can be (insurance helps, but it doesn’t cover a lot of our son’s medical needs). I know you have other requests, from other equally loved friends and family members, whose causes are also important.<span style="mso-spacerun: yes;"> </span>Please know that when I ask, I don’t do so lightly. It takes a sizeable amount of humility and a healthy dose of desperation to send you that email or tag your name in a social media post.<span style="mso-spacerun: yes;"> </span>I hate doing it.<o:p></o:p></span></div>
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<!--[if !supportLists]--><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: "Century Gothic"; mso-bidi-font-family: "Century Gothic"; mso-fareast-font-family: "Century Gothic";"><span style="mso-list: Ignore;">3.<span style="font: 7.0pt "Times New Roman";"> </span></span></span></i></b><!--[endif]--><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: "Century Gothic";">Asking for your time is even worse.</span></i></b><span style="font-family: "Century Gothic";"> We are all busy. Time is a precious commodity. I worked and raised kids, I know. Requesting that you put aside your own family, your obligations and your billable hours, gives me hives. If I ask you to join our walk team, sign up for an event in your area, or volunteer at one…I will be chugging Benadryl- no joke.<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><o:p></o:p></i></b></span></div>
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<!--[if !supportLists]--><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: "Century Gothic"; mso-bidi-font-family: "Century Gothic"; mso-fareast-font-family: "Century Gothic";"><span style="mso-list: Ignore;">4.<span style="font: 7.0pt "Times New Roman";"> </span></span></span></i></b><!--[endif]--><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: "Century Gothic";">I’m not as calm, composed and pulled together as you may think I am.</span></i></b><span style="font-family: "Century Gothic";"> I am really just a mess with decent organizational skills that I was forced to adopt.<span style="mso-spacerun: yes;"> </span>My knees shake when I have to speak in front of people. I practice my spiel in front of the mirror before a big meeting. I am usually juggling priorities and trying to catch my breath just like everyone else, and I get really stressed out, but I work painstakingly at making it look easy so that I can </span><span style="font-family: "Century Gothic";">convey my message with </span><span style="font-family: "Century Gothic"; text-indent: -0.25in;">confidence.</span></div>
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<!--[if !supportLists]--><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: "Century Gothic"; mso-bidi-font-family: "Century Gothic"; mso-fareast-font-family: "Century Gothic";"><span style="mso-list: Ignore;">5.<span style="font: 7.0pt "Times New Roman";"> </span></span></span></i></b><!--[endif]--><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: "Century Gothic";">I would change it all in a heartbeat. </span></i></b><span style="font-family: "Century Gothic";">Usually, the author of a column such as this would say that despite the hardships, heartache, and strife, she wouldn’t change a thing. I am trying to be exceptionally honest here and I am telling you that I would change everything if given the chance to take this diagnosis out of the equation and give my child a level playing field in life. That isn’t something that is easy for me to admit. You probably think that my cause is my identity and who would I be without it? Honestly, I don’t know who I would be because that wasn’t my journey in this life. Maybe I would still be the shy, disorganized hive-free girl of my youth, maybe not.<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><o:p></o:p></i></b></span></div>
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<span style="font-family: "Century Gothic";">It also means that I would not have met the incredible and inspirational people I’ve come to know along this path. These are the people who I now consider as beloved as my own family.<span style="mso-spacerun: yes;"> </span>We understand one another better than anyone else in our lives does, including our own parents. We have supported one another in good news and have held hands and wiped each other’s tears with the bad. They are the people who will understand these words more impactfully than anyone else will. Yet, even though changing everything would include eliminating these precious relationships from my life, I would do that. Because doing so would impact my son’s ability to play sports, ride a bicycle, go on dates, be invited to parties, kiss a girl, hang out with friends in the casual way that other teens take for granted, not have a roster of specialists, need regular MRIs, an IEP, medication and the need for me, his Mom, to step far outside that zone of comfort on a regular basis to be the person who feels a need, while in Walk-mode, to make disclosures like this one.<o:p></o:p></span></div>
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<span style="font-family: "Century Gothic";">I hope that knowing these things about me makes it a little easier for you to tolerate my seemingly endless capacity for badgering. With any luck, you won’t immediately skim over my social media pleas, won’t cross the street when you see me coming or avoid my emails and calls. Instead, maybe you will respond. Maybe you will be honest with me too and just tell me that it’s not a good time, that you appreciate my discomfort, would like to help me with my cause, but that you aren’t able. Or maybe now you will understand that even making a small donation will speak volumes and will make it all worthwhile for me. That when you respond and you don’t avoid and when you show even an inkling of support, I can get up tomorrow morning, smile at my son and put my big girl panties back on to face another day outside of my comfort zone.<o:p></o:p></span></div>
Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com11tag:blogger.com,1999:blog-6375249913856744161.post-47281419649658283302016-06-10T04:35:00.000-07:002016-06-12T16:01:24.870-07:00Gradual Change...Place Your Bets<div class="MsoNormal" style="background: white; line-height: 16.5pt; text-align: justify;">
<span style="font-family: "courier new" , "courier" , monospace; font-size: x-large;">A</span><span style="font-family: "verdana";">s I contemplated the meaning of what is happening in his life right now, my mind bounced around the last 18 years like the little ball on the Roulette Wheel. Where will it land? Where will </span><i style="font-family: Verdana;">he</i><span style="font-family: "verdana";"> land? But then I realized that he’s not going to “land” anywhere just yet, ever really. We never actually become stationary beings do we? We may stay put for a few rotations of the wheel, but once the spinning starts again, back to bouncing we go. Such is life. <o:p></o:p></span></div>
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<span style="font-family: "verdana"; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">Since I could not allow myself to focus on any one thought about this next chapter in his life, this next spin of the wheel, I chose to go to a concrete source for answers, the Webster’s Dictionary.<o:p></o:p></span></div>
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<span style="background: white; color: #666666; font-family: "verdana"; font-size: 16.0pt;">graduate</span><span style="color: #666666; font-family: "verdana"; font-size: 16.0pt;"><o:p></o:p></span></div>
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<span style="color: #979797; font-family: "times"; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">[<i>noun, adjective</i> <b>graj</b>-oo-it, -eyt; <i>verb</i> <b>graj</b>-oo-eyt] <o:p></o:p></span></div>
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<span style="color: #666666; font-family: "verdana"; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">noun<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="color: #666666; font-family: "verdana"; font-size: 11.5pt;"><span style="mso-list: Ignore;">1.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span style="color: #666666; font-family: "verdana"; font-size: 11.5pt;">a person who has received a degree or diploma on completing a course of study, as in a university, college, or school.<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="color: #666666; font-family: "verdana"; font-size: 11.5pt;"><span style="mso-list: Ignore;">2.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span style="color: #666666; font-family: "verdana"; font-size: 11.5pt;">a student who holds the bachelor's or the first professional degree and is studying for an advanced degree.<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="color: #666666; font-family: "verdana"; font-size: 11.5pt;"><span style="mso-list: Ignore;">3.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span style="color: #666666; font-family: "verdana"; font-size: 11.5pt;">a <a href="http://www.dictionary.com/browse/graduated-cylinder"><span style="color: #307dbc;">graduated cylinder</span></a>, used for measuring.<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="color: #666666; font-family: "verdana"; font-size: 11.5pt;"><span style="mso-list: Ignore;">4.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span style="color: #666666; font-family: "verdana"; font-size: 11.5pt;">of, relating to, or involved in academic study beyond the first orbachelor's degree:<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="color: #666666; font-family: "verdana"; font-size: 11.5pt;"><span style="mso-list: Ignore;">5.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span style="color: #666666; font-family: "verdana"; font-size: 11.5pt;">having an academic degree or diploma:<o:p></o:p></span></div>
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<span style="color: #666666; font-family: "verdana"; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">verb (used without object),</span><span style="color: #666666; font-family: "verdana"; font-size: 11.5pt;"> <b>graduated, graduating.</b><o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="color: #666666; font-family: "verdana"; font-size: 11.5pt;"><span style="mso-list: Ignore;">6.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span style="color: #666666; font-family: "verdana"; font-size: 11.5pt;">to receive a degree or diploma on completing a course of study (oftenfollowed by <i>from</i>):<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="color: #666666; font-family: "verdana"; font-size: 11.5pt;"><span style="mso-list: Ignore;">7.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span style="color: #666666; font-family: "verdana"; font-size: 11.5pt;">to pass by degrees; change gradually.<o:p></o:p></span></div>
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<span style="font-family: "verdana"; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">The first six versions of the definition were not exactly what I was seeking. Granted, all are accurate; however finite. Number 7 is what I was after with its fluidity. “To pass by degrees; change gradually.” This is what it means to transition from this stage of life, the way it’s been for the past 13+ years, to the next unknown phase. There will be no sudden transformation, no monumental occurrence, which will define the rest of time. If we are fortunate, life happens by degrees; events change gradually. What a relief! Now that is something I can work with. I think he will be comforted in knowing this as well.<o:p></o:p></span></div>
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<span style="font-family: "verdana"; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">The thing about being the parent of a child with atypical needs is that somewhere along the way, you are bound to experience the most intense level of protective you might ever feel. This tends to become evident around the time you first sit across the table from a committee who is there to make decisions about said child’s education. At least it was this way for us. We value education in our family. The fact that our youngest son’s Roulette Wheel spin resulted in him being born with a progressive tumor disorder, which often comes with the added bonus of learning disabilities, was not going to alter this value for this child. In fact, our dedication to setting him up for success was relentless. Okay, his Dad is a Neuropsychologist and his Mom has a Masters degree in Education! Of course, the added credibility, sitting at the table in those meetings, on his behalf was a benefit, but we never did believe in coincidences. We would have done whatever it took to narrow down his odds and give him the least restrictive and most productive environment regardless of our education and training.<o:p></o:p></span></div>
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<span style="font-family: "verdana"; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">We also didn’t create any illusions. We expected that he would work hard and that he would invest himself in his success. Our expectations were the same for all of our kids; apply yourself, take your education seriously, shoot for the moon and never settle for mediocrity, unless <i style="mso-bidi-font-style: normal;">that</i> was your personal best. We didn’t reward grades. We rewarded effort, improvement, and attitude. Mostly though, we would never put more stock in their success than they put in themselves. This child was no different. And he demonstrated that year after year. His determination took our expectations straight into outer space!<o:p></o:p></span></div>
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<span style="font-family: "verdana"; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">Our son was already 4 years 11 months when the district firmly denied him a second year of Special Education preschool. After all, they offered a Young Kindergarten class for all students who were not quite ready for Kindergarten, but had been through preschool. This was a one-size-fits-all mentality and it would suffice for all students…despite my insistence that <i style="mso-bidi-font-style: normal;">this</i> student was not ready for <i style="mso-bidi-font-style: normal;">that</i> level of independence. The same classroom teacher, who had belittled my protests in the placement meeting, took exactly one week of having our student in her class to agree with me. He effectively set the precedent in the district. Never again would a child who was not ready, be forced to attend the Young K program. Score one for us!<o:p></o:p></span></div>
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<span style="font-family: "verdana"; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">When we were trying to make a decision about placement for Kindergarten, we were given two options by our public elementary school: A K-1 self-contained classroom or…somewhere else. Five minutes in this classroom was enough for me to know that the only option was not an option. We had to dig deep, but we were able to find a private school setting with low student/teacher ratios and combined age levels, which ended up being a perfect fit. From there (when the school closed down 2 years later as a result of poor management) it was back to our local public school and a 2/3 Special Ed classroom; a 12/1/1 (12 students, one Special Education teacher, one aide). It wasn’t ideal, but we adored the teacher and she adored our son. He started mimicking some behaviors that weren’t his own and wasn’t really progressing the way we had hoped. Once you are slotted into that setting, they push you through in that setting and he had to change schools in 4<sup>th</sup> grade to be in the “appropriate” classroom. At this point in time, our child also knew that he was misplaced and he vocalized his objections. We took a giant leap for 5<sup>th</sup> grade and spun that oppressive wheel once again to find out if he could succeed in a co-taught class with 24 students and 2 teachers, 1/3 of which were special needs.<o:p></o:p></span></div>
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<span style="font-family: "verdana"; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">This was the point in time that I can truthfully say that he started to shine. He met another boy, so much like himself, and they bonded. He had his first honest to goodness, no holds barred, <u>friend</u> and we started to see him gain confidence, develop a sense of humor and become radiant. This was the year he emerged from his cocoon and he became transformed. Who knew that taking that chance, challenging him to a new standard, would give him wings?</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6xO4QRk2tR7Yr7lfAxJ21Bam8qFlMfFnV1gomchl3U4bGr266fROuR-jUg4nywgTvOYtnGX5oznxf0hgxFeqcPKIw7nq8XPKGx9LErv25mHD_OVF9vscvpmhm2f2bP8Wp8bG_M0weZxl8/s1600/summer+09+012.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6xO4QRk2tR7Yr7lfAxJ21Bam8qFlMfFnV1gomchl3U4bGr266fROuR-jUg4nywgTvOYtnGX5oznxf0hgxFeqcPKIw7nq8XPKGx9LErv25mHD_OVF9vscvpmhm2f2bP8Wp8bG_M0weZxl8/s320/summer+09+012.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">5th Grade Buddies</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigCaz_H_-gYB8IvBBPR24dh0_bgiRAYIHB91_D30Hg4SiYXssjZJ6rjcK8iDOOpt7kZU8kWfIonQ-J9KTdKL7S2KfPSeFKpk0bl7dBW-u3UpHPFyBQWnbtaOuslN90XHjC8Hnl6kymIRQR/s1600/IMG_0919.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigCaz_H_-gYB8IvBBPR24dh0_bgiRAYIHB91_D30Hg4SiYXssjZJ6rjcK8iDOOpt7kZU8kWfIonQ-J9KTdKL7S2KfPSeFKpk0bl7dBW-u3UpHPFyBQWnbtaOuslN90XHjC8Hnl6kymIRQR/s320/IMG_0919.JPG" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Friends for life</td></tr>
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<span style="font-family: "verdana"; line-height: 16.5pt;">He stayed in co-taught classes through the end of twelfth grade with more intense subject matter and higher level learning and not once did we think we’d pushed him too hard. Quite the contrary, we encouraged him to take risks and made certain that he had a safety net in place at all times, even though he didn’t always know it was there. The boy who we were told might never accomplish much of anything, the one who we were not supposed to expect a lot from, is now going to graduate High School with honors and has enrolled in Community College for the fall. He thinks he wants to study animal science. He also obtained a driver’s license this spring, voted in his first Presidential Primary, started a part-time job and opened a checking account. Shame on those who tried to place limits on the prospects of this child!</span><span style="font-family: "verdana"; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"></span></div>
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<span style="font-family: "verdana"; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">The ball is bouncing and the wheel is spinning and it’s going to land just where it is supposed to land and I cannot control the outcome. I influenced what I could along the way, I encouraged, I supported, I informed, I taught, I applauded, I ached and I prayed in order to increase his chances of a win, and that was the extent of my abilities. Now it’s up to him. Now it’s his turn to take the reins and place his bets and I’m reluctant to let go; to walk away from the table and relinquish my role. I know that I don’t have any say in the matter. I brought him into this life and I nurtured him along but it is his life to live and to make mistakes in. It’s up to him to learn from his mistakes and to push on and to celebrate his victories. <o:p></o:p></span></div>
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<span style="font-family: "verdana"; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">But when your child began at a disadvantage and when he has labored every step of the way; had a new challenge at each intersection and didn’t get to be one of the typical kids, letting go is nearly impossible. I hope he knows how difficult this time will be for me so he can cut me some slack when maybe I hover or helicopter, or whatever I do that doesn’t help him to feel independent. I hope he knows that I can’t stand to see him struggle with mundane tasks because he has already had so many significant battles in his life. He has to know this because I couldn’t bear to be the one who held him back in the end, after thwarting the attempts of anyone who tried it along the way. He will know because he knows how much I love him and the one thing about me I am most confident that he understands, is that I will fight for him. I will always fight for him. Go ahead and spin wheel of fortune, this boy is ready for your next challenge!</span><span style="color: #666666; font-family: "verdana"; font-size: 11.5pt;"><o:p></o:p></span></div>
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<b><span style="color: #333333; font-family: "verdana"; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span>“Fear is going to be a player in your life, but you get to decide how much. You can spend your whole life imagining ghosts, worrying about your pathway to the future, but all there will ever be is what’s happening here, and the decisions we make in this moment, which are based in either love or fear.</span></b><b><span style="color: #333333; font-family: "verdana"; font-size: 12.0pt;">So many of us choose our path out of fear disguised as practicality. What we really want seems impossibly out of reach and ridiculous to expect, so we never dare to ask the universe for it.”<br /> </span></b><b><span style="color: #333333; font-family: "verdana"; font-size: 12.0pt;">~Jim Carrey, Commencement speech</span></b></blockquote>
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Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com0tag:blogger.com,1999:blog-6375249913856744161.post-74083554661076185532016-03-01T10:26:00.001-08:002016-03-01T10:26:36.326-08:00Fighting NF on Capitol Hill<span style="font-family: Verdana, sans-serif;">On Friday, February 24, 2016, I was pleased to be a</span> <span style="font-family: Verdana, sans-serif;"><a href="http://www.ctf.org/item/fighting-nf-on-capital-hill.html">Guest Blogger for Children's Tumor Foundation</a> on the topic of NF Advocacy!</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">If you've ever wondered what is involved in being a political advocate for a cause, this blog post may just answer your questions. </span><br />
<span style="font-family: Verdana, sans-serif; font-size: x-small;"><br /></span>
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<span style="background-color: white; line-height: 17.5636px;"><span style="color: #0b5394; font-family: Arial, Helvetica, sans-serif; font-size: x-small;">"There is something very powerful in knowing that you have a voice with important issues and that you can be heard. For me, NF Advocacy has become not only my right, but my responsibility as a mother..."</span></span></blockquote>
Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com0tag:blogger.com,1999:blog-6375249913856744161.post-58015865520600245432015-07-07T10:19:00.000-07:002015-07-07T10:19:21.414-07:00Marriage's Chais and Lows<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtI8m0HYRz97wkqTMT7GlQzXKKsbLV42SXf3RHNqb1_bxWoEmfY3y-mBMrrJuMtrTNbqObgcr6VsmBUwxR1-qSpDqVOBU3Acpd9xYK-Vcv3XWi02Qio-bGqt6ID6USWgWvMyyjsxhibb40/s1600/078.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtI8m0HYRz97wkqTMT7GlQzXKKsbLV42SXf3RHNqb1_bxWoEmfY3y-mBMrrJuMtrTNbqObgcr6VsmBUwxR1-qSpDqVOBU3Acpd9xYK-Vcv3XWi02Qio-bGqt6ID6USWgWvMyyjsxhibb40/s400/078.jpg" width="391" /></a><span style="font-family: Verdana, sans-serif;"></span></div>
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<span style="font-family: Verdana, sans-serif;"><span style="font-size: large;">O</span>n July 7, 1997, I married the man who I believed in with
every ounce of my being. It was a civil ceremony. We had both been married
before and each of us had two young children whose needs we were obligated to
consider, and two not yet realized. Our vows were not just to one another, but
to the family that we were about to create. The odds were against us. 70% of
second marriages with children fail. We were bound and determined to beat the
odds. It wasn't easy. Actually, it is damn hard at times. In addtion to the second marriage stats, there are the stats against couples with special needs children. It has been documented that there is a higher divorce rate in these families than in the general population. In some ways, for us, having our son with NF was the glue that bound us together.</span></div>
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<span style="font-family: Verdana, sans-serif;"><span style="font-size: large;">W</span>ith our mutual devotion to the NF cause and our unwavering support for our son, we have always had this point of cohesion. I am aware of the blame factor that happens between couples in our situation. There is also often jealousy that comes into play with the demands for time that a child with special needs requires. We have been very fortunate not to have fallen into these two traps of marital destruction. I suppose part of that was due to the multiple other dynamics, all vying for attention, in our union, but whatever it is, I am thankful for it because I know myself well enough to understand that this would have been my breaking point.</span></div>
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<span style="font-family: Verdana, sans-serif;"><span style="font-size: large;">O</span>n September 7, 2003 </span><span style="font-family: Verdana, sans-serif; text-align: start;">despite the huge obstacles and impossible probability, we consecrated our marriage under God in a religious ceremony, surrounded by our family and our friends. It was an incredibly meaningful and spiritual day. Again, we took vows. This time our promises included six children, one another and a higher power. This was not a decision that we took lightly. It was a renewal and a new beginning all at once.</span></div>
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<span style="font-family: Verdana, sans-serif;"><span style="font-size: large;">T</span>oday, we have reached our 18<sup>th</sup> year of
matrimony. The number 18 has tremendous significance in Judaism. It is the
number Chai, which means living or being. Since life is the highest of all
blessings, this number carries great weight. Marriage is not passive. It is
active, with constant energy needed to sustain its life; its Chai. The
dedication and commitment that is made in a ceremony of marriage, is not to be
forsaken and Peter and I have had to remind ourselves and each other of that
many times through these 18 years. We have so many lives, including our own and
our pledge before God, who depend on us to continue to defy the odds of second
marriages and we remain true to that, even when it has felt impossible.</span></div>
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<span style="font-family: Verdana, sans-serif;"><span style="font-size: large;">O</span>ur 18 years have had beautiful moments: the births of our two children, Jesse and Alexa, the B’nai Mitzvahs of all our children, the graduations, accomplishments and family togetherness that we embraced. There has been loss, imperfections and heartache as well; as is with life, or Chai, which we have somehow managed to survive together. There is only one thing that I want for our Chai anniversary. That one thing, is actually not a thing at all, it is a philosophy. I want us to have the clarity to remember this day 18 years ago and everything that brought us together, everything that kept us together through the last 18 years and to foresee a future of being together for the next 18. </span></div>
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<span style="font-family: Verdana, sans-serif;">L’Chaim, to Life!</span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">Chai-ya! Take that, Statistics!</span></td></tr>
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Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com0tag:blogger.com,1999:blog-6375249913856744161.post-27367190117888148652015-05-20T15:08:00.001-07:002015-05-20T15:08:44.498-07:00I kNow a Fighter...or Two...<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">I k<span style="background-color: white; color: #0b5394;">N</span>ow a <span style="color: #0b5394;">F</span>ighter</span></h2>
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<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">I know a teen-aged boy with a million dollar smile.</span></div>
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<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">He loves dogs and playing Xbox.</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">He is happy; existing as though he has no worries.</span></div>
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<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">He has tumors throughout his body and he always will.</span></div>
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<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">He knows no self-pity.</span></div>
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<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">He is a Fighter.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
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<span style="color: lime; font-family: Arial, Helvetica, sans-serif;">I know a sparkly girl, who adores pandas and going to the car races.</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: lime; font-family: Arial, Helvetica, sans-serif;">She has a tumor in her brain and she is maturing more</span></div>
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<span style="color: lime; font-family: Arial, Helvetica, sans-serif;">quickly than the girls she loves to go swimming with.</span></div>
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<span style="color: lime; font-family: Arial, Helvetica, sans-serif;">She never complains.</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: lime; font-family: Arial, Helvetica, sans-serif;">She is a Fighter.</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
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<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">I know a brother and sister with a twinkle in their eyes.</span></div>
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<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">Reading is his passion and hers is for animals.</span></div>
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<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">They were born with a genetic condition.</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">His neck tumor threatens his ability to swallow or even breathe.</span></div>
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<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">He is on a waiting list to try a treatment that may not even work.</span></div>
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<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">They put on capes and they lead their </span></div>
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<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">community in a charity walk.</span></div>
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<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">They are Fighters.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
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<span style="color: lime; font-family: Arial, Helvetica, sans-serif;">I know a daughter graduating from high school.</span></div>
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<span style="color: lime; font-family: Arial, Helvetica, sans-serif;">She is compassionate and kind and loves</span></div>
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<span style="color: lime; font-family: Arial, Helvetica, sans-serif;">making her friends laugh.</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: lime; font-family: Arial, Helvetica, sans-serif;">School work is harder for her. It doesn't stop her from trying.</span></div>
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<span style="color: lime; font-family: Arial, Helvetica, sans-serif;">She educates the public about the disorder that</span></div>
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<span style="color: lime; font-family: Arial, Helvetica, sans-serif;">Caused her brain surgery.</span></div>
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</div>
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<span style="color: lime; font-family: Arial, Helvetica, sans-serif;">She is a Fighter.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
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<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">I know a son who will study engineering in college.</span></div>
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<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">Music and friends, being a typical teen are what matter to him.</span></div>
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<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">He has had 14 neuro-surgeries in 7 years.</span></div>
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<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">The disruption in his life is unacceptable, but is not a barrier to his future.</span></div>
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<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">He is an ambassador for the cause and when he speaks,</span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">He inspires.</span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">He is a Fighter.</span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="text-align: center;">
<span style="color: lime; font-family: Arial, Helvetica, sans-serif;">I know a tiny girl who sings and hides her face from the camera.</span></div>
<div style="text-align: center;">
<span style="color: lime; font-family: Arial, Helvetica, sans-serif;">She likes girly things, teasing her brothers and pulling at heart strings.</span></div>
<div style="text-align: center;">
<span style="color: lime; font-family: Arial, Helvetica, sans-serif;">She has never known a day without pain</span></div>
<div style="text-align: center;">
<span style="color: lime; font-family: Arial, Helvetica, sans-serif;">Or a life without struggle.</span></div>
<div style="text-align: center;">
<span style="color: lime; font-family: Arial, Helvetica, sans-serif;">She is a Fighter.</span></div>
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<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #3d85c6;">I know a courageous mother, a proactive father, a supportive Grandma, a Devoted sister and </span></span></div>
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<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">An Aunt who always shows up.</span></div>
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<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">Inside, their fear knows no bounds.</span></div>
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<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">Outside, they only show strength and perseverance.</span></div>
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<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">They organize, fundraise, advocate, study, investigate, educate, run, walk, swim, bike, hold hands, wipe tears, and pray for eachother.</span></div>
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<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">Meanwhile, they smile and they never lose hope.</span></div>
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<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">They are Fighters.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I know a <a href="http://ctf.org/">Foundation</a>. It's colors are <span style="color: #3d85c6;">blue</span> and <span style="color: lime;">green</span>.</span></div>
<div style="text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif;">There are scientists, researchers, leaders</span></div>
<div style="text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif;">And a board of directors.</span></div>
<div style="text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif;">There are managers and program directors, coordinators,</span></div>
<div style="text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif;">Team leaders and interns.</span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">And there are volunteers.</span></div>
<div style="text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif;">Each works passionately toward the same goals.</span></div>
<div style="text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif;">They support those living with Neurofibromatosis (NF):</span></div>
<div style="text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif;">Providing tools for activism and empowerment,</span></div>
<div style="text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif;">Events for funding and community building,</span></div>
<div style="text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif;">Campaigns for advocacy and awareness,</span></div>
<div style="text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif;">And most importantly,</span></div>
<div style="text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif;">They research</span></div>
<div style="text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif;">For </span></div>
<div style="text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif;">A</span></div>
<div style="text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif;">Cure.</span></div>
<div style="text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif;">They are Fighters.</span></div>
<div style="text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">I know a donut-loving friend with bones that don't easily mend,</span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">An undie running young man with big personality and limited mobility,</span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">A pageant winning beauty with spirit and pride,</span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">A legally blind canvas painting prodigy with philanthropy,</span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">A rugby playing </span><span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">paralympian</span><span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;"> with an alter ego,</span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">A softball loving little princess with an amputation,</span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">A curious crew leader with a big heart and an eye patch,</span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">An aspiring disc jockey with a shy smile and learning disabilities,</span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">A mini, wise-cracker with big guns and chronic pain,</span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">A debuting young video director with a cheek tumor and an aneurism,</span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">A tough, Irish golfing fan undergoing chemo therapy,</span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">A baseball slugging little man with a mischeivious grin and low muscle tone, </span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">And I know angels...</span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">With butterfly garden memorials,</span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">Lives interrupted,</span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">Dreams abandonned,</span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">And greiveing families.</span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">I think it's safe to say that I know a Fighter...</span></div>
<div style="text-align: center;">
<span style="color: #3d85c6; font-family: Arial, Helvetica, sans-serif;">or Two.</span></div>
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<br />Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com9tag:blogger.com,1999:blog-6375249913856744161.post-90665041530030538902015-01-08T13:48:00.000-08:002015-01-08T13:48:04.089-08:00Let Go, Let Baseball<br />
<header style="background-color: white; box-sizing: border-box; line-height: 22.2222232818604px;"><div class="byline" style="box-sizing: border-box; color: #38393c; margin-bottom: 10px;">
<span class="text-muted" style="box-sizing: border-box; color: #545559;"><span style="font-family: Verdana, sans-serif; font-size: large;">I</span><span style="font-family: Verdana, sans-serif; font-size: x-small;">t all started with a declaration from the back seat, "I want to play baseball." I looked in the rear view mirror and saw the pure determination in the clear blue eyes of my 11 year old son and I forced myself to swallow my resistance. In a typical situation, this would seem like a normal request from an 11 year old, raised in a household of die-hard Yankees fans, but Jesse's situation wasn't typical and he had never played an organized sport before. My instinct was to protect him from the cruelty and intolerance of the kids his age who had been playing on little league and travel teams for the last 6 years of their lives. In hindsight, I am thrilled to say that I didn't give in to my insecurity on this occasion. If I had, Jesse would have been denied a valuable experience that ended up being a precious gift to us all.</span></span></div>
<div class="byline" style="box-sizing: border-box; margin-bottom: 10px;">
<span class="text-muted" style="box-sizing: border-box;"><span style="line-height: 22.2222232818604px;"><span style="color: #444444; font-family: Verdana, sans-serif; font-size: x-small;">Naturally, a mother wants to protect her child, right? This is especially true when the child is "less-able." I use that term because I can't bring myself to call him disabled or special needs because he <i>is</i> able, just not <i>as</i> able as some other kids his age and he does have special needs, but don't all kids have individual needs? I know it is just semantics; but it matters to me because I never want my child to feel that he is "dis" anything. I want him to feel that he is special, but even that word has taken on derogatory meanings that have nothing to do with him.</span></span></span></div>
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<div class="byline" style="box-sizing: border-box; color: #38393c; margin-bottom: 10px;">
<span class="text-muted" style="box-sizing: border-box; color: #545559;"><span style="font-family: Verdana, sans-serif; font-size: x-small;">Jesse was born with a spontaneous mutation of a neurological disorder called neurofibromatosis, type 1. For Jesse, this resulted in learning delays, spinal cord and ankle tumors, a leg bone on the right side that grew faster than it's mate on the left, a tumor in his brain on the optic nerve, low muscle tone, balance and coordination issues and, by the grace of God, the naive inability to see himself as being any different from his peers. That burden was given to me instead. I did my best not to let my inner mother lioness hold him back from trying anything and everything he was intent on giving a shot, but this was physical and boys of that age could be awful and I was genuinely concerned about the potentially very bad outcome that could result from acquiescing to this particular demand. I found a compromise. I signed him up for the <a href="http://www.littleleague.org/learn/about/divisions/challenger.htm">Challengers</a> league. His team was called, The Yankees.</span></span></div>
<blockquote class="tr_bq" style="box-sizing: border-box; color: #38393c; margin-bottom: 10px;">
<span style="font-size: x-small;"><span class="text-muted" style="box-sizing: border-box; color: #545559; font-family: Courier New, Courier, monospace;">CaringBridge entry: May 24, 2008 </span></span></blockquote>
<blockquote class="tr_bq" style="box-sizing: border-box; color: #38393c; margin-bottom: 10px;">
<span style="font-size: x-small;"><span style="box-sizing: border-box; color: #336666; font-family: Courier New, Courier, monospace;">"Yes, I'm getting good hits. It's real fun to be in little league baseball. Whenever I'm on base, I keep my eye on the batter and when they hit it, I run to the next base as fast as I can. Thank you for signing my guestbook. I like getting your notes. It makes me happy." -Jesse</span></span></blockquote>
<blockquote class="tr_bq" style="box-sizing: border-box; color: #38393c; margin-bottom: 10px;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEh-0C6BmfNB8bVqAcllQZxNSDf86BjKLMT7HUQb2RR7ySvevtHadOg8Uty3ZX2yPYfDjHpaNsWRb1d_vHLT75GQKxaGHUq0NdvQWMhIIel09kJGC6S4_NuZrm5s49oLqLjkvtgW1U5OkV/s1600/Softball+08+084.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: Courier New, Courier, monospace;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEh-0C6BmfNB8bVqAcllQZxNSDf86BjKLMT7HUQb2RR7ySvevtHadOg8Uty3ZX2yPYfDjHpaNsWRb1d_vHLT75GQKxaGHUq0NdvQWMhIIel09kJGC6S4_NuZrm5s49oLqLjkvtgW1U5OkV/s1600/Softball+08+084.jpg" height="320" width="255" /></span></a><span style="font-size: x-small;"><span style="box-sizing: border-box; color: #336666; font-family: Courier New, Courier, monospace;">Well I went to the game today...At first I was sitting there absorbing all that was going on. I saw so many kids with MD, CP, severe Autism and other handicapping conditions. I was thinking that my child didn't fit in and that he didn't belong there. And then...I overheard Jesse talking to one of the boys in a wheel chair on the field. With such pride in his voice, he told the boy, "I've never played baseball on a team before."</span></span><span style="font-size: x-small;"><span style="box-sizing: border-box; color: #336666;"><span style="font-family: Courier New, Courier, monospace;">It touched me so deeply. I got all choked up and with tears welling in my eyes, I admonished myself for thinking that he didn't belong yet one more place. He does belong. Anywhere that makes him smile and feel proud of being a part of something bigger than he is, is a place where he belongs. He doesn't look around that field and see disabled kids. He looks around that field and sees baseball players. Once again, my beautiful boy taught me a lesson in humility.</span><br />
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<span style="color: #444444; font-family: Verdana, sans-serif; font-size: x-small;">Jesse finished the season with the challengers in a "World Series" game at <a href="http://www.frontierfield.org/">Frontierfield</a> and earned a trophy for participation, just like everyone else. </span><br />
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<span style="font-family: Verdana, sans-serif; font-size: x-small;"><span style="color: #444444;">He enjoyed the introductory experience to baseball, but was fully aware of the differences from "regular" Little League. He had been going to his sisters' games for years, and he yearned to play with the full experience. The following spring, we lost our baseball champion; Grandma Genie, an original Brooklyn Dodgerette in 1942, who passed away just a few months after her 90th birthday celebration. Jesse was also scheduled for his first growth plate surgery later that summer. Baseball wasn't in the cards. But in May of 2010, he was still highly motivated to live the American dream and play ball, so my husband, a Little League softball coach for several years, contacted the league coordinator and explained the situation. We wanted to increase the chances in any way that we could that he would have a positive experience. It was a gamble that we agreed to take so that we could give our son his rite of passage as an American preteen boy. Within 24 hours we got a call that a coach and team had been hand-picked for Jesse. </span><span style="color: #444444; line-height: 28.2539691925049px;">He had been placed on a AAA team, Doyle Chevrolet/Subaru with Coach, Mike Kirby and Assistant Coach, Sean Kennedy. <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiG12C_zBoJ5j9-vKS6xc7BaaCAAZhHovQhOS6Tgw0a2bkwJsjVzSTVW_jMWW_HAewzJWUtB-yQioPj6x1diUOI79200tztiLO734wvJsrLVJvHMwAI3XkP8K4J7qpDQWnCMRn_2pp8FepR/s1600/Doyle+Cheverolet+2010+PLL+001.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiG12C_zBoJ5j9-vKS6xc7BaaCAAZhHovQhOS6Tgw0a2bkwJsjVzSTVW_jMWW_HAewzJWUtB-yQioPj6x1diUOI79200tztiLO734wvJsrLVJvHMwAI3XkP8K4J7qpDQWnCMRn_2pp8FepR/s1600/Doyle+Cheverolet+2010+PLL+001.JPG" height="213" width="320" /></a></div>
</span><span style="color: #444444;"><span style="line-height: 22.2222232818604px;">The kids on the team were a year younger than he was (he was 13 by now) and the coach and his assistant were both known to be encouraging and have a big-hearted approach to the game. We also contacted an organization through the school district called <a href="http://www.advocacycenter.com/together-including-every-student-ties">Ties</a>, <span style="line-height: 30px;">Together Including Every Student, </span></span><span style="line-height: 22.2222232818604px;">which matched a trained peer volunteer with Jesse to provide support and encouragement during the games. His name was Aaron and he showed up to every game. The bonus was that he was a mutual Yankees fan; he became a good friend to Jesse. </span></span></span><span style="color: #444444;"><br />
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<span style="font-family: Verdana, sans-serif; font-size: x-small; line-height: 22.2222232818604px;">Since the season had already started, Jesse's first practice was not the team's first gathering; they had already begun to bond. </span><span style="font-family: Verdana, sans-serif; font-size: x-small; line-height: 28.2539691925049px;">The coach introduced him to the team and explained some of his limitations </span><span style="font-family: Verdana, sans-serif; font-size: x-small; line-height: 28.2539691925049px;">in front of Jesse</span></span><span style="color: #444444; line-height: 28.2539691925049px;"><span style="font-family: Verdana, sans-serif; font-size: x-small;">, in a sensitive way that didn't embarrass him. I stayed at the first few practices and watched closely for any sign of unkind behavior; ready to pounce. After his first game one of the boys yelled out, "Let's give it up for Jesse, the new guy!" I was overwhelmed with relief and let my guard down enough to stop staying at his practices. He got a hit at his second game. He also got hit by two pitches and walked both times. He didn't strike out even once and began picking up the fielding techniques he was learning. He was trying so hard that it was sometimes painful to watch, but it was going really well and he was so proud.</span><div class="separator" style="clear: both; font-family: Verdana, sans-serif; text-align: center;">
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<blockquote class="tr_bq" style="color: black; line-height: 20px; margin-bottom: 10px;">
<span style="font-family: Courier New, Courier, monospace;"><b>"There may be people who have more talent than you, but there's no excuse for anyone to work harder than you do - and I believe that."<br /><a href="http://www.brainyquote.com/quotes/authors/d/derek_jeter.html" style="color: #0000aa; text-decoration: none;">Derek Jeter</a></b></span></blockquote>
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<span style="font-family: Verdana, sans-serif; font-size: x-small; line-height: 28.2539691925049px; text-align: center;">Jesse was blossoming. He was a part of a team. They won some and they lost some and he took quite a few pitches for the team, but the commonality was his huge smile at the end of every game. He played third base and the outfield and he tried so hard every single time. He didn't play every inning and he fatigued easily, but he never complained and he never gave up. I held my heart in my hand with every at bat, not because I was afraid he would strike out, because I knew how badly he wanted to do well for his team. There was one show-boaty team in particular which created anxiety, AT&T, in the bright orange jerseys. The coach was loud; often deprecating, and the team did a "victory lap" after every game they won. As with all great Hollywood endings, Doyle Chevrolet was slated against AT&T in the championship game. What a nail biter it was!</span></div>
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<span style="font-size: x-small;">CaringBridge entry: <span class="text-muted" style="box-sizing: border-box; color: #545559;">Jun 30, 2010 8:21am</span></span><span style="box-sizing: border-box; color: #4f6228;"><span style="box-sizing: border-box; font-family: Consolas;"><span style="font-size: x-small;"></span></span></span></blockquote>
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<span style="box-sizing: border-box; color: #4f6228;"><span style="box-sizing: border-box; font-family: Consolas;"><span style="font-size: x-small;">The baseball season ended like a fairytale!<span style="box-sizing: border-box;"> </span>Jesse’s team won the AAA Championship!!!<span style="box-sizing: border-box;"> </span>It was such an exciting game and an amazingly inspirational season.<span style="box-sizing: border-box;"> </span>To see the beaming smile on Jesse’s face each time he took a base, either by a walk, getting hit by the pitch or on a few occasions, due to a bunt, made it all worthwhile.<span style="box-sizing: border-box;"> </span>Jesse learned much from his coaches, teammates and also from his TIES volunteer, Aaron.<span style="box-sizing: border-box;"> </span>Dare I say, I think he taught them all a few things as well?<span style="box-sizing: border-box;"> </span>He teaches me things about myself and about life constantly and this experience was no different.<span style="box-sizing: border-box;"> </span>As I was “coaching” him to swing and take a chance, his coach was teaching him about pitch selection.<span style="box-sizing: border-box;"> </span>I learned that I should definitely leave the coaching to the people designated for that purpose.<span style="box-sizing: border-box;"> </span></span></span></span></blockquote>
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<span style="color: #4f6228; font-family: Consolas; line-height: 22.2222232818604px;"><span style="font-size: x-small;">In his end of the season email, Coach Kirby pointed out:</span></span></blockquote>
<blockquote class="tr_bq" style="box-sizing: border-box; font-family: Arial, Verdana, sans-serif; margin-bottom: 10px;">
<span style="color: #0b5394; font-size: x-small;"><span style="font-family: Consolas; line-height: 22.2222232818604px;">“I think the most important lesson we all learned is that when we rely on each other, from the best player to the one with the weakest skills, we win. Just in today's game,think about how important pitch selection is to a successful at bat.</span><span style="box-sizing: border-box; font-family: Consolas; line-height: 22.2222232818604px;"> </span><span style="font-family: Consolas; line-height: 22.2222232818604px;">I've been working with each of you on that all season. Today Jesse walked twice, making sure not to swing at pitches that were out of the strike zone.</span><span style="box-sizing: border-box; font-family: Consolas; line-height: 22.2222232818604px;"> </span><span style="font-family: Consolas; line-height: 22.2222232818604px;">This turned out to be key in our victory.</span><span style="box-sizing: border-box; font-family: Consolas; line-height: 22.2222232818604px;"> </span><span style="font-family: Consolas; line-height: 22.2222232818604px;">In one of those walks, he drove in a run (got the RBI).</span><span style="box-sizing: border-box; font-family: Consolas; line-height: 22.2222232818604px;"> </span><span style="font-family: Consolas; line-height: 22.2222232818604px;">Another one of those walks, he ended up coming home and crossing the plate. Those two runs and two outs could have been the difference in the game. Throughout the season, each of us were looking for how we contribute to the team, and how we make a difference.”</span></span></blockquote>
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<span style="box-sizing: border-box;"><span style="box-sizing: border-box;"><span style="font-size: x-small;"><span style="color: #444444; font-family: Courier New, Courier, monospace;">Not only did Jesse end the season with a great trophy (that he earned), but he made a lot of friends and gained a life-changing experience to add to his mental scrapbook.<span style="box-sizing: border-box;"> </span>I am so glad we took this chance and gave Jesse this wonderful opportunity, another lesson learned!</span></span></span></span><br />
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<span style="box-sizing: border-box;"><span style="box-sizing: border-box;"><span style="font-size: x-small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8y2iZIFxid7LY9PH0Rn7baxGzgMTopMokX3OefvHtM2UU_pEHpqxy46lm35Ozpsk3tcqWJ81nIW1x8up0gtEhzF_TVRHcc1GjC07nP0dNF-e6bTzyYSm_kjomWUGSjw9jViqLznc4FKa4/s1600/Doyle+Cheverolet+2010+PLL+007.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8y2iZIFxid7LY9PH0Rn7baxGzgMTopMokX3OefvHtM2UU_pEHpqxy46lm35Ozpsk3tcqWJ81nIW1x8up0gtEhzF_TVRHcc1GjC07nP0dNF-e6bTzyYSm_kjomWUGSjw9jViqLznc4FKa4/s1600/Doyle+Cheverolet+2010+PLL+007.JPG" height="400" width="266" /></a></span></span></span></div>
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<span style="box-sizing: border-box;"><span style="box-sizing: border-box;"><span style="font-size: x-small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEil3t7E_CZGYLqd8Bqd9G70A0b4antGvAb_GewnoPR7VvGBwfg2IPiqrJIek3Sq2-2UedyIFtYPdHVjB3CVPOepYpyjQPqKV8NlDQwlBvf808TIzjKIgbYCn05B6nGfzf9Sx-u-cxxh3V5Z/s1600/Doyle+Cheverolet+2010+PLL+008.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEil3t7E_CZGYLqd8Bqd9G70A0b4antGvAb_GewnoPR7VvGBwfg2IPiqrJIek3Sq2-2UedyIFtYPdHVjB3CVPOepYpyjQPqKV8NlDQwlBvf808TIzjKIgbYCn05B6nGfzf9Sx-u-cxxh3V5Z/s1600/Doyle+Cheverolet+2010+PLL+008.JPG" height="400" width="266" /></a></span></span></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGXRYyP9EZwtN2wgeNAlnIYvVWw6s6hV4Bi0g5hV2l9toPIbsL0RFGREzVcaWcahhdmO9EHCxduzuv233jJPgDjq1MblO0N8x_9h18R0ZZ-f40d5crkxuim4_tztQ8cpAP42-7RW3QYC-9/s1600/Doyle+Cheverolet+2010+PLL+009.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGXRYyP9EZwtN2wgeNAlnIYvVWw6s6hV4Bi0g5hV2l9toPIbsL0RFGREzVcaWcahhdmO9EHCxduzuv233jJPgDjq1MblO0N8x_9h18R0ZZ-f40d5crkxuim4_tztQ8cpAP42-7RW3QYC-9/s1600/Doyle+Cheverolet+2010+PLL+009.JPG" height="266" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">And there you have it; the run that won the championship!</span></td></tr>
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<span style="box-sizing: border-box;"><span style="box-sizing: border-box; color: #444444; font-family: Verdana, sans-serif; font-size: x-small;">Although he attempted to play one more season, the following year, the kids were older; a little more capable, a little less forgiving. He was older too and was gaining self awareness. There had been two leg surgeries by that final baseball summer and it just wasn't the same. He reluctantly had to stop playing about 1/2 way through the season because it proved physically to be too hard on him. </span></span><br />
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<span style="box-sizing: border-box;"><span style="box-sizing: border-box; color: #444444; font-family: Verdana, sans-serif; font-size: x-small;">Jesse will always have the memories of winning the championship with his team, Doyle Chevrolet, and he will remember that feeling of standing in the dirt, with the sun on his face and the breeze in his hair, listening to the crowd cheering him on, for the rest of his life. As parents, we are wired to protect our children even though doing so may mean that we prevent them from gaining a valuable experience. This time, I stepped way out of my comfort zone and exposed my son to potential doom. Thank God I did! Baseball surely enhanced my less-able son's life in a primal way that is incomparable to any other thing that could have shaped him. </span></span><br />
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<span style="box-sizing: border-box; color: #4f6228; font-size: 12pt;"><span style="box-sizing: border-box; font-family: Courier New, Courier, monospace;"><b><span class="bqQuoteLink" style="color: black; font-size: 20px; line-height: 26px;">"<a href="http://www.brainyquote.com/quotes/quotes/y/yogiberra621244.html?src=t_baseball" style="color: black; text-decoration: none;" title="view quote">Love is the most important thing in the world, but baseball is pretty good, too.</a>"</span></b></span></span><br />
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<a href="http://www.brainyquote.com/quotes/authors/y/yogi_berra.html" style="color: #0000aa; text-decoration: none;" title="view author"><span style="font-family: Courier New, Courier, monospace;"><b>Yogi Berra</b></span></a></div>
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</header>Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com0tag:blogger.com,1999:blog-6375249913856744161.post-46541659313798503802014-06-27T12:28:00.001-07:002015-01-29T07:15:57.381-08:00 Son Rise, Son Set: A Mother's Dilemma <span style="font-family: Verdana, sans-serif;">Parenthood is messy and magical. If you do your job halfway decently, it is your worst nightmare combined with your best fantasy. In most cases, it doesn't happen naturally or easily; the way we saw it on television when we were growing up. The Huxtables, Cunninghams, </span><span style="font-family: Verdana, sans-serif;">and </span><span style="font-family: Verdana, sans-serif;">Bradys certainly did nothing to prepare me for the job. </span><span style="font-family: Verdana, sans-serif;">Raising children is a mountain climb, not a walk in the park. Parts of the path are steep with twists and turns and others are on an even pitch, requiring little effort. To make things more complicated, each child that you have is another adventure altogether. If we only knew ahead of time which challenges we would face.</span><br />
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<span style="font-family: Verdana, sans-serif;">When you are told that your infant has a progressive tumor disorder, the journey is altered in a way that you could never have imagined. There are changes in the way you think about things, which you previously took for granted. Instead of <i>when</i> he will accomplish a new milestone, you wonder <i>if </i>he will<i>. </i>Everything you imagined for your child is suddenly ambiguous and the mental image you have created of his future becomes blurred and uncertain.</span><br />
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<span style="font-family: Verdana, sans-serif;">You make choices about getting involved in the cause, which helps you to cope, and you drum up support from friends, family and anyone who will listen for that matter. People want to help because it is so unfair and they realize that no matter how rough their child's ear infections are, they are blessed by comparison. Or perhaps, your strength and determination has inspired them to act.</span><br />
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<span style="font-family: Verdana, sans-serif;">When your teen-aged son's behavior takes a drastic turn for the worse, (Well he was always a spirited and sometimes unruly child anyway, right?) again, your path is altered. He begins self-medicating and taking dangerous risks. You feel completely helpless and have no sense of control. And even though the two situations share a lot in common: everything you had imagined for his future becomes clouded, mental health disorders are unfair, you need help coping...you find yourself very much alone.</span><br />
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<span style="font-family: Verdana, sans-serif;">I am the mother of two such sons. Somehow, it always seems that their crises coincide and I am forced to choose between my sons. Which one has a more urgent need? Am I rescuing or enabling my older son? Who will suffer most if I turn to the other? These are choices that mothers are not meant to make. These are impossible choices with dire consequences and do not ever have "right" answers. Yet, I find myself in this unimaginable situation time and again.</span><br />
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<span style="font-family: Verdana, sans-serif;">Children being born with a spontaneous mutation of a neurological disorder that has no effective treatments and no cure is one of those horribly unfair events in life. There is no shortage of sympathy and support available to them and to their caregivers. Their lives can be very challenging. Children being born with mental health challenges is equally undue, yet with that comes stigma and, as opposed to tumor disorders, little sympathy and scant amounts of support from outsiders. It is truly an unjust dichotomy that is central to my world.</span><br />
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<span style="font-family: Verdana, sans-serif;">One son has required long car rides to other states to find the appropriate specialists who know about neurofibromatosis. We have taken plane trips to participate in clinical studies and have had surgeries at hospitals far from home. My other son has been shipped across the country to avoid jail time at the age of 17. He was entrusted to strangers in a wilderness camp and then to more strangers in a residential treatment facility that I had never laid my own eyes on. He spent ten months and four years worth of college savings, in this treatment, only to come back home and repeat his previous behavior, despite having plans in place to ensure his success.</span><br />
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<span style="font-family: Verdana, sans-serif;">Both sons have kept me awake many nights with fears of impending doom and irrational worries about future unknowns. Both have depended on me to make enormous, life-altering decisions on their behalfs; judgments, which would have been difficult for a stranger, are yet impossible for a mother. Imagine that your toddler keeps bumping into things, falling and hitting his head, has poor balance and muscle weakness, yet the neurologist following his care says, "I don't recommend MRI unless there is a valid reason to do one. Call me if he begins to drag a leg or can't stand up." Can you conceptualize explaining what NF <i>is</i> to a so-called specialist and then have him report that he would like to aspirate the "swelling" (plexiform tumor) in your son's ankle and lower extremity to understand what is causing it?</span><br />
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<span style="font-family: Verdana, sans-serif;">Try to envision the courage and strength that it would take to call the police to report that your 19 year old son has threatened to take his own life and that he confided in you that he has a weapon. The tenacity it takes to stand by his hospital bed in the emergency room where he is being treated for a concussion and dog bites inflicted by the K-9 patrol when he hid in a basement and would not surrender, is unfathomable. Try to understand how it feels to have him spit at you and hurl insults about your crappy parenting while you, needing to plead with the staff to admit him to the inpatient unit for mental health, question every decision you have ever made that led you to this point in his life. </span><br />
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<span style="font-family: Verdana, sans-serif;">These examples are just a small sampling of the trials that I have been "chosen" to face as the parent of these two boys. I don't ask for pity, I don't even <i>want</i> pity! I ask for understanding. Please know that in my heart, one son is no less significant than the other. My younger son, born with a neurological disorder, and my older son, who is an addict resulting from an imbalance in his brain chemistry, are both worthy of my kindness, and yours. I love them equally and unconditionally and I ask the same consideration from the world.</span><br />
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<span style="font-family: Verdana, sans-serif;">When you are a new parent it is devastating to hear these words describing the diagnosis of your infant: "There is currently no cure for neurofibromatosis and there are no effective treatments." NF is highly under recognized, yet there are more occurrences of NF than of Cystic Fibrosis, Duchenne Muscular Dystrophy, Tay Sachs and Huntington's Disease combined! Research is crucial to changing these facts. In 2012, an <a href="http://www.nfregistry.org/" target="_blank">NF Registry</a> was launched to connect researchers and pharmaceutical companies with the NF patient database. The current focus is in getting people with NF to join the registry, and reaching the goal of 10,000 participants, so that the clinical studies can be adequately populated.</span><br />
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<span style="background-color: #fefefe; color: #555555; font-family: Arial, Helvetica, sans-serif; line-height: 18.200000762939453px;">"NF research may benefit an additional 100 million Americans (i.e. 65 million with cancer and 35 million with learning disabilities)." (<a href="http://www.ctf.org/Learn-About-NF/Facts-Statistics.html">www.CTF.org</a>)</span></blockquote>
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<span style="font-family: Verdana, sans-serif;">Mental health problems are highly stigmatized and exceedingly misunderstood. Yet:</span><br />
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<li style="border: 0px; margin: 0px; padding: 0px 0px 10px 5px;"><span style="font-size: x-small;">One in five American adults experienced a mental health issue</span></li>
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<li style="border: 0px; margin: 0px; padding: 0px 0px 10px 5px;"><span style="font-size: x-small;">One in 10 young people experienced a period of major depression</span></li>
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<li style="border: 0px; margin: 0px; padding: 0px 0px 10px 5px;"><span style="font-size: x-small;">One in 20 Americans lived with a serious mental illness, such as schizophrenia, bipolar disorder, or major depression</span></li>
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<span style="font-size: 0.812em;">Suicide is the 10th leading cause of death in the United States. It accounts for the loss of more than 38,000 American lives each year, more than double the number of lives lost to homicide.</span><span style="font-size: 0.812em; line-height: 28.420000076293945px;">(</span><a href="http://www.mentalhealth.gov/basics/myths-facts/" style="font-size: 0.812em; line-height: 28.420000076293945px;">http://www.mentalhealth.gov/basics/myths-facts/</a><span style="font-size: 0.812em; line-height: 28.420000076293945px;">)</span><span style="background-color: transparent; font-size: 0.812em; line-height: 28.420000076293945px;"> </span></blockquote>
<span style="font-family: Verdana, sans-serif;">With support and understanding, individuals suffering from mental health disorders can thrive in society. </span><br />
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<span style="background-color: white; color: #222222; font-family: Arial; font-size: 0.812em; line-height: 1.5em;">"Friends and loved ones can make a big difference. Only 38% of adults with diagnosable mental health problems and less than 20% of children and adolescents receive needed treatment. Friends and family can be important influences to help someone get the treatment and services they need by:</span><br />
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<li style="border: 0px; margin: 0px; padding: 0px 0px 10px 5px;">Reaching out and letting them know you are available to help</li>
<li style="border: 0px; margin: 0px; padding: 0px 0px 10px 5px;"><a href="http://www.mentalhealth.gov/get-help/index.html" style="color: rgb(128, 0, 128) !important; font-weight: bold; margin: 0px; padding: 0px; text-decoration: none;">Helping them access mental health services</a></li>
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<li style="border: 0px; margin: 0px; padding: 0px 0px 10px 5px;">Learning and sharing the facts about mental health, especially if you hear something that isn't true</li>
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<li style="border: 0px; margin: 0px; padding: 0px 0px 10px 5px;">Treating them with respect, just as you would anyone else</li>
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<li style="border: 0px; margin: 0px; padding: 0px 0px 10px 5px;">Refusing to define them by their diagnosis or using labels such as "crazy" (<a href="http://www.mentalhealth.gov/basics/myths-facts/">http://www.mentalhealth.gov/basics/myths-facts/</a>)<span style="background-color: transparent;"> </span></li>
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<span style="font-family: Verdana, sans-serif;">Human compassion and kindness are easy to come by when you suffer from a medical diagnosis, yet much less so when you endure a mental health disorder. </span><span style="font-family: Verdana, sans-serif;">Chances are that you are close to someone who has fit into the latter category and have felt a need to hide that person's sorrow from others to avoid the dishonor that tends to go along with it. </span><span style="font-family: Verdana, sans-serif;">Change can happen and will if even just one person embraces it. Will you be the one to alter the pattern of behavior? Or will you wait for someone else to do so?</span><br />
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<span style="font-size: large;"><b><span style="background-color: white; color: #181818; font-family: georgia, serif; line-height: 18px;">“Love and compassion are necessities, not luxuries. Without them, humanity cannot survive.” </span><br style="background-color: white; color: #181818; font-family: georgia, serif; line-height: 18px;" /><span style="background-color: white; color: #181818; font-family: georgia, serif; line-height: 18px;">― </span><a href="http://www.goodreads.com/author/show/570218.Dalai_Lama_XIV" style="background-color: white; color: #666600; font-family: georgia, serif; line-height: 18px; text-decoration: none;">Dalai Lama XIV</a><span style="background-color: white; color: #181818; font-family: georgia, serif; line-height: 18px;">, </span><i style="background-color: white; color: #181818; font-family: georgia, serif; line-height: 18px;"><a href="http://www.goodreads.com/work/quotes/1651617" style="color: #666600; text-decoration: none;">The Art of Happiness</a></i></b></span></blockquote>
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<span style="font-family: Verdana, sans-serif;"><br /></span>Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com4tag:blogger.com,1999:blog-6375249913856744161.post-56676152816207920742014-06-09T13:31:00.000-07:002014-06-28T16:50:50.447-07:00Surrounded by Greatness<div class="Body">
<span style="font-family: Verdana, sans-serif;"><span style="font-size: x-large;">I </span>sit here reflecting on the NF Forum weekend from my couch. It
is difficult to summarize all of the feelings that come from being surrounded
by greatness. From re-connecting and
making new connections, to being addressed by the Director of the NIH, Francis Collins, MD, PhD (one of the co-discoverers of the NF gene), and all of the
greatness in between, I am thoroughly, mentally and physically, deliciously
exhausted. </span></div>
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<span style="font-family: Verdana, sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG8d9sNTim4lHsoglejMJjTnVLAj1lkvkkZtGrAM2O1Y29gwxRJ6rf3mXjOpFZYh_KDECecvX_c0ZItMy_moQn1aggnVQGSOYXkGDogjJFkWAN-vnf4QA4f4y5cA-_Bvcdc-W5cr4S_CiU/s1600/10390204_10152086562467307_3427682795246283808_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG8d9sNTim4lHsoglejMJjTnVLAj1lkvkkZtGrAM2O1Y29gwxRJ6rf3mXjOpFZYh_KDECecvX_c0ZItMy_moQn1aggnVQGSOYXkGDogjJFkWAN-vnf4QA4f4y5cA-_Bvcdc-W5cr4S_CiU/s1600/10390204_10152086562467307_3427682795246283808_n.jpg" height="240" width="320" /></a></span></div>
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<span style="font-family: Verdana, sans-serif;">How do I describe the completeness that comes from being a part
of this amazing NF community; the only people in my life who really get
it? It is nearly impossible to explain
the bond</span><span style="font-family: Verdana, sans-serif;">, that we in this community </span><span style="font-family: Verdana, sans-serif;">have formed</span><span style="font-family: Verdana, sans-serif;">, to those who so generously
show their compassion and consistently </span><span lang="FR" style="font-family: Verdana, sans-serif;">support our effort</span><span style="font-family: Verdana, sans-serif;">s, yet do not share our journey. After having </span><span style="font-family: Verdana, sans-serif;">had the opportunity to spend time together I miss them all so deeply from the minute we separate. And with
every event, I expand my NF family, which invariably results in new little ones
for whom I will surely lose sleep.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZhMiH0422oPU9REMXXhWlSIyolrL7R98_xZPKhiCHNLIu-N_CdrTauuRGZr_aWdRGf5A4hJQ58XmaNj9cqmYi5ZfOBpgoydMhyHKuirJ3knvL3hLPa0EoLNyRSsRICHLrUV1fwM9ypnxn/s1600/10253813_10202800634794348_3363030055127494121_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZhMiH0422oPU9REMXXhWlSIyolrL7R98_xZPKhiCHNLIu-N_CdrTauuRGZr_aWdRGf5A4hJQ58XmaNj9cqmYi5ZfOBpgoydMhyHKuirJ3knvL3hLPa0EoLNyRSsRICHLrUV1fwM9ypnxn/s1600/10253813_10202800634794348_3363030055127494121_n.jpg" height="300" width="400" /></a><span style="font-family: Verdana, sans-serif;"></span></div>
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<span style="font-family: Verdana, sans-serif;">My very first visit to Capitol Hill as an advocate for CDMRP
funding for NF research was an immersed learning experience. Thirty-seven of us
took to the Hill on June 5th to attend meetings with Congressional staff,
Representatives and Senators. I was
fortunate to be among a well-rounded team consisting of Squire Patton Boggs
Staff member, Karen Kudelko, CTF Staff member, Garrett Gleeson, an NF2 patient
from CT, Rhianna Curotto, an NF1 wife and mother from NJ, Farida Timal and me,
NF1 mom, a VA transplant from NY. As the
day progressed, and with it, our confidence increased, we each contributed a
unique perspective of the crucial need for continued support of DOD funding. I
am truly hooked to this newest role in my fight to #EndNF. If you are
considering participation in future efforts, please take this one piece of
advice very seriously. Wear comfortable shoes!</span><br />
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<span style="font-family: Verdana, sans-serif;">Our Chapter Council has one opportunity to gather together each
year. We call it networking time, but even more than that, it is a period of
time in which we are re-inspired and recharged to get back out there and kick
NF's butt. We are the public face of the
Children's Tumor Foundation; often times, the first contact an individual will
have with the foundation. As Chapter Council leaders, Jill Markland, Karyn
Zazula and I have the responsibility of guiding, inspiring and setting an
example for the nation's CTF ambassadors. We strive to assemble a day filled
with useful tools that this very important resource of people can take back
home and use to guide and inspire those in their own chapters. In recognition
of the greatness of this amazing group of volunteers, whose passion is driven by
love and hope, I created this video. </span></div>
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<object class="BLOGGER-youtube-video" classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=6,0,40,0" data-thumbnail-src="https://ytimg.googleusercontent.com/vi/j4B_i0w84ag/0.jpg" height="266" width="320"><param name="movie" value="https://youtube.googleapis.com/v/j4B_i0w84ag&source=uds" /><param name="bgcolor" value="#FFFFFF" /><param name="allowFullScreen" value="true" /><embed width="320" height="266" src="https://youtube.googleapis.com/v/j4B_i0w84ag&source=uds" type="application/x-shockwave-flash" allowfullscreen="true"></embed></object></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpUcx0PV8d-9HaFws9oytgBFm5LCcsIsc6P_FmD785lZ1Jm4yTO4XrAzd4pjFzLOAjz5pQ4msTW9D-VyZkR5Vm9f_HEmRgk3LxqK9lS2enkutW2SlyAv9CnovxXhilxduh9bqgDocOdcLg/s1600/photo.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpUcx0PV8d-9HaFws9oytgBFm5LCcsIsc6P_FmD785lZ1Jm4yTO4XrAzd4pjFzLOAjz5pQ4msTW9D-VyZkR5Vm9f_HEmRgk3LxqK9lS2enkutW2SlyAv9CnovxXhilxduh9bqgDocOdcLg/s1600/photo.JPG" height="320" width="235" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif; font-size: xx-small;">Dr. David Viskochil, co-director of </span><br />
<span style="font-family: Verdana, sans-serif; font-size: xx-small;">NF Clinic, University of Utah</span></td></tr>
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<span style="font-family: Verdana, sans-serif;">Just when I think I know all there is to know about NF (not
nearly), I learn many new things from the forum presenters and key-note
speakers. Some aspects are enlightening and will surely make my life easier,
while others destroy me with their possibilities. The varied topics on this
year's agenda gave me much to absorb. There were discussions to feed my psyche
about learning, coping, and improving social skills and there were topics to
fuel my intellect, covering pain, genetics, and tumor management. The malignancy presentation frightened me
beyond my own understanding and required me to take some time to regain my
composure. I am happy that I did, because the last two sessions about NF
history and current research recharged my battery. If the researchers and
doctors have had the ability to gain the increased understanding that they have
in just the past few decades, I am encouraged to believe that with advancements
in technology and new interest in NF research, they
will bring us much closer to a cure and effective treatments, very soon.<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbZJtVuh4mEN7w_s70tUyJDDq9xI1BP7Oye2HTvQMQG-N6YLhH5Ixr4zi7n-e7sHPLW5EOExsql3SG8Zak3FS-tj9N-4_yv7j1BAUsWppQJEFPwZ8A8ZoPBzp5vbNuSOQPtfx8974A9ATB/s1600/photo+6.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbZJtVuh4mEN7w_s70tUyJDDq9xI1BP7Oye2HTvQMQG-N6YLhH5Ixr4zi7n-e7sHPLW5EOExsql3SG8Zak3FS-tj9N-4_yv7j1BAUsWppQJEFPwZ8A8ZoPBzp5vbNuSOQPtfx8974A9ATB/s1600/photo+6.JPG" height="320" width="235" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;">Dr. Maria Acosta, Children's</span><br />
<span style="font-size: xx-small;">National Medical Center</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgj65mQyDQh1CusPNwfoYmuzxnOFE9vLdIQy7rauiarMpvYcanxVhDUOQFajxgMMUeymkERvJ_rQGmlTnnCQF_p0YSa3qo2A7c8xmfAvwQS8Oz7nD4D-wngjuzk3vl8D9S1Ln8f0Pk6345/s1600/10373141_10152084889742307_4007817104182020283_o.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgj65mQyDQh1CusPNwfoYmuzxnOFE9vLdIQy7rauiarMpvYcanxVhDUOQFajxgMMUeymkERvJ_rQGmlTnnCQF_p0YSa3qo2A7c8xmfAvwQS8Oz7nD4D-wngjuzk3vl8D9S1Ln8f0Pk6345/s1600/10373141_10152084889742307_4007817104182020283_o.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jessica Cook, UK Director, Can You Hear Us?</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxiBJU5Ln9bx-zQORJ-haSgIltB-Yd5Pb69dyBER_ahh35FhHInCCKi6k4PXGrCo2xePacpeZ0V8h4XinzHu_PeyxYQXQi5tbtN5HOfHxtWzj1MWraMblNS_jn1Co4JgD5c28haapzjaWx/s1600/photo+1.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxiBJU5Ln9bx-zQORJ-haSgIltB-Yd5Pb69dyBER_ahh35FhHInCCKi6k4PXGrCo2xePacpeZ0V8h4XinzHu_PeyxYQXQi5tbtN5HOfHxtWzj1MWraMblNS_jn1Co4JgD5c28haapzjaWx/s1600/photo+1.JPG" height="320" width="255" /></a></div>
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<span style="font-family: Verdana, sans-serif;"><span style="font-size: x-large;">F</span>rancis Collins, MD, PhD, director of the NIH, is an extremely
busy man. Yet, he committed to taking a brief amount of time out of his schedule
to address our group; the largest gathering of NF doctors, researchers,
patients and families to date.</span><span style="font-family: Verdana, sans-serif;"> </span><span style="font-family: Verdana, sans-serif;">We are
indeed a contagious bunch. Although, Dr. Collins certainly had someplace else
to be, he continued to "work the room" and pose for photos after the
standing ovation his address elicited from the crowd.</span><span style="font-family: Verdana, sans-serif;"> </span><span style="font-family: Verdana, sans-serif;">How could we not be in awe of this man's
greatness? He is the Director of the National Institutes of Health (NIH) and
the overseer of the largest body of work in biomedical research in the world.
He is responsible for landmark discoveries of disease genes and, in fact, was a
co-discoverer of the very gene, which changed the life of every single person
in that room in one way or another; the NF gene.</span></div>
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<span style="font-family: Verdana, sans-serif;">The evening progressed in its greatness with the real-life
account of this year's Children's Tumor Foundation Ambassador, Bailey Gribben.
At just 16 years old, Bailey has already experienced more than his fair share
of health challenges, yet he has never allowed himself to be a victim of his
circumstances. How easy it would be for him to sink into that role. Instead, Bailey rises to each challenge and
overcomes. Beyond that, he exceeds anyone's expectations, except for his own,
and excels in life. I, for one, will not be one bit surprised when the day
comes that Bailey has played a role in huge scientific advancements of NF
research. Has this ever actually occurred in history? </span></div>
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<span style="font-family: Verdana, sans-serif;">I think of Bailey, a young man I am blessed to know, when I read this Aristotle quote:</span></div>
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<span style="font-family: Verdana, sans-serif;"> "The
beauty of the soul shines out when a man bears with composure one heavy
mischance after another, not because he does not feel them, but because he is a
man of high and heroic temper."</span></blockquote>
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<tr><td class="tr-caption" style="text-align: center;">NF heroes Bailey Gribben and D. Anthony Evans</td></tr>
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<span style="font-family: Verdana, sans-serif;">As I recovered from the lump of pride that Bailey's story formed in my
throat, one last speaker took the podium; Annette Bakker, PhD, President and
CSO (Chief Scientific Officer) of Children's Tumor Foundation. Dr. Bakker began her rein with CTF just
months ago after serving as the CSO for the past several years. She has not
allowed one role to hinder the other as her drive to #EndNF somehow continues
to gain momentum with every new advancement. "I am going to save your
children," was the declaration that got my tears flowing, partly because
nobody has ever said it before, but
mostly because I believe her. Dr. Bakker's passion about her research is awe
inspiring, but her genuine care and concern for the people affected by NF
touches my core. I am proud to serve the foundation that she so effectively
leads toward a cure.<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIWp6DKguxzID4vhxuaGTliizCR935SRVh6wNV1cYPxlQMTGwocpTFLUOf8aWqeuGUxUbikQ82MgcYjjMdCEAL1CxE4F5Af37mwD6KJI8dVfiZoclY5jWzPnj0x_0A8b65SSPmpPz_YBpY/s1600/photo+2.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIWp6DKguxzID4vhxuaGTliizCR935SRVh6wNV1cYPxlQMTGwocpTFLUOf8aWqeuGUxUbikQ82MgcYjjMdCEAL1CxE4F5Af37mwD6KJI8dVfiZoclY5jWzPnj0x_0A8b65SSPmpPz_YBpY/s1600/photo+2.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Peter and I with NF Moms Stephanie and April<br />
and CTF President and CSO, Annette Bakker</td></tr>
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<span style="font-family: Verdana, sans-serif;">The greatest moment of the night came in the announcement of Jim
Bob and Lauré<span lang="IT">e Moffett</span>'s $2.5 million dollar matching gift donation to
fund a <a href="http://www.ctf.org/Research/Synodos.html" target="_blank">SYNODOS</a> research collaboration for NF1.
This follows a recent announcement of a gift made by Mark and Tracy
Galloway toward a similar project for NF2. </span></div>
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<span style="font-family: Verdana, sans-serif;">To say that my hope is renewed after this powerful weekend of being surrounded by greatness, is
clearly an understatement. I am at a loss to describe the myriad of emotions I
experienced over the course of these 4 days.
Advocacy, Community, Networking, Education, Engagement, Inspiration and
Encouragement are just a few of the words that summarize a Children's Tumor
Foundation NF Forum weekend. If you have not yet had the opportunity to
participate, you are missing out. Children's Tumor Foundation makes every
effort to reduce costs and select locations that will make the events
accessible to all. I would be happy to help you find a way to make it to the
next one, ten months from now. </span></div>
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<span style="font-family: Verdana, sans-serif;">Some highlights from the weekend:</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVcnfME54_PpCq9TxDTaz2xGqUHRoBrQuQ2VGkhGeZqhD3XMmhvOVZLTS3CKSYyKAX66s2LosPnhz_xCYRDn51xN9bYAKPxALQ8N9JYXGNHxvHmZzYlKYAZuMmp2bg2744vBik_7WMePsC/s1600/photo+3.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVcnfME54_PpCq9TxDTaz2xGqUHRoBrQuQ2VGkhGeZqhD3XMmhvOVZLTS3CKSYyKAX66s2LosPnhz_xCYRDn51xN9bYAKPxALQ8N9JYXGNHxvHmZzYlKYAZuMmp2bg2744vBik_7WMePsC/s1600/photo+3.JPG" height="180" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">VP of CTF, John Heropoulos with NF Moms<br />April Anderson, Anita Gribben and me</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmgLGdx9WquRpQVwiHf3jdsAlETBdipAIcDQRhVttX8eddHkSUzZ4e95HENv0eRuydXuocTkV2vt7I_twwknVYu4JDtaf5SYavumNGumhfVdEIaZozhsfV6YKBmBKODVrB9rb-pGWxQl14/s1600/P3.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmgLGdx9WquRpQVwiHf3jdsAlETBdipAIcDQRhVttX8eddHkSUzZ4e95HENv0eRuydXuocTkV2vt7I_twwknVYu4JDtaf5SYavumNGumhfVdEIaZozhsfV6YKBmBKODVrB9rb-pGWxQl14/s1600/P3.JPG" height="221" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">NF2 Hero, Matt Hay, Anita Gribben, Tracy Galloway-</span><span style="font-family: Verdana, sans-serif;">board member, </span><span style="font-family: Verdana, sans-serif;">Peter and I</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">The beautiful Omni-Shoreham Hotel in DC</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisstrDWt9jULb1BeL4-K_R_e5_ftgAH7Rf713EcTq99Wp4_R_9_Igbsep8-LBRJgMPH0G5WO6fyNiYyi5uuPHYKnLYgkZMO0UZPsorMubydQdhNwcx6T5ZUpnhNDbF7S2ye3VYnQdGjaPh/s1600/P5.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisstrDWt9jULb1BeL4-K_R_e5_ftgAH7Rf713EcTq99Wp4_R_9_Igbsep8-LBRJgMPH0G5WO6fyNiYyi5uuPHYKnLYgkZMO0UZPsorMubydQdhNwcx6T5ZUpnhNDbF7S2ye3VYnQdGjaPh/s1600/P5.JPG" height="299" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">Storming Capitol Hill with Farida Timal<br />Rhianna Currato</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9FWxu1afUfdxYNxIocR6SplY9RHeYgUsWYwPAKeI3Sxg8V8baG_QB0bDsHkly7VQKX3wtMc_UZgvTSZpc1bFdrQhcWqSf9HUVjUgaogCoUs1A_iglYRw4LJ02QIIJy_5vEvJ2oSnF4UuT/s1600/P6.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9FWxu1afUfdxYNxIocR6SplY9RHeYgUsWYwPAKeI3Sxg8V8baG_QB0bDsHkly7VQKX3wtMc_UZgvTSZpc1bFdrQhcWqSf9HUVjUgaogCoUs1A_iglYRw4LJ02QIIJy_5vEvJ2oSnF4UuT/s1600/P6.JPG" height="320" width="224" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">Politics!</span></td></tr>
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<span style="font-family: Verdana, sans-serif;">NF Teens and Siblings hanging out together and having fun.</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">Words of wisdom from <br />Communications Director, Simon Vukelj</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV7NNsJigs5gjDXIJXXhroAX2IjttwRprZ94IAvDqLmlJF2gt8S3QS9Htsy1ceI4whyphenhyphendq2Rl-9-83vHDLM3GF8hV9eb2-kDB-7QQOygFgKSm-t3o0wqPPlQqbEg8TdTCIYf6E4MGuBVkJJ/s1600/NF+Forum+and+CC+2014+019.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV7NNsJigs5gjDXIJXXhroAX2IjttwRprZ94IAvDqLmlJF2gt8S3QS9Htsy1ceI4whyphenhyphendq2Rl-9-83vHDLM3GF8hV9eb2-kDB-7QQOygFgKSm-t3o0wqPPlQqbEg8TdTCIYf6E4MGuBVkJJ/s1600/NF+Forum+and+CC+2014+019.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">Effective Communication by Peter Sorman, PhD at Chapter Council</span></td></tr>
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Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com4tag:blogger.com,1999:blog-6375249913856744161.post-51947004024375877732014-05-19T18:37:00.000-07:002015-01-09T13:08:33.331-08:00NF is...Awareness, Hope, Never Giving Up<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Verdana, sans-serif;"><span style="font-size: x-large;">B</span>eing that May is NF Awareness month, and the awareness campaign coming out of the Children's Tumor Foundation this year is "NF is," I have posted my interpretations, along with some factual information, on my Facebook page. This is a compilation of all of my posts for anyone who missed them or isn't on Facebook at all.</span><br />
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<span style="font-family: Verdana, sans-serif;">We started the month just fresh from an MRI, which revealed new tumor growth in Jesse's spine. The upside is that he isn't experiencing any symptoms which would require intervention at this time. The downside is that new tumors are new tumors and we will have to monitor them and be terrified of what they could become.</span><br />
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<span style="font-family: Verdana, sans-serif;">During the course of the month, a beautiful, 8 year old little girl with NF1, was snatched away from her family very suddenly. I cry everyday when I read her beloved mother's posts, which she writes in conversation with the daughter whose hair she should still be brushing and whose body she should still be snuggling. She passed on Mother's Day, of all days to lose a child, this particular mother will never again have the wherewithal to celebrate that sacred day. </span><br />
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<a class="uiLinkSubtle" href="https://www.facebook.com/connie.b.sorman/posts/10202568056580038" style="color: #898f9c; cursor: pointer; text-decoration: none;">May 2</a> near <a class="uiLinkSubtle" href="https://www.facebook.com/pages/Midlothian-Virginia/106041102761306?ref=stream" style="color: #898f9c; cursor: pointer; text-decoration: none;">Midlothian, VA</a><br />
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<a ajaxify="/ajax/privacy/privacy_menu.php?iconsize=small&oid=10202568056580038" aria-expanded="false" aria-haspopup="1" aria-label="Your friends and Jesse's friends" class="uiSelectorButton uiButton uiButtonSuppressed uiButtonNoText" data-hover="tooltip" data-label="" data-length="30" data-oid="10202568056580038" data-tooltip-alignh="center" data-tooltip="Your friends and Jesse's friends" href="https://www.facebook.com/connie.b.sorman#" rel="toggle" role="button" style="-webkit-box-shadow: none; background-color: transparent; background-image: none; background-position: 100% -157px; background-repeat: no-repeat no-repeat; background-size: 854px 256px; border: 1px solid transparent; color: #3b5998; cursor: pointer; display: inline-block; font-size: 11px; font-weight: bold; line-height: 13px; max-width: 169px; padding: 2px 20px 2px 8px; text-align: center; text-decoration: none; vertical-align: top; white-space: nowrap;"><i class="mrs defaultIcon customimg img sp_wCWiqXfOhXF sx_ed4477" style="background-image: url(https://fbstatic-a.akamaihd.net/rsrc.php/v2/y4/r/6UkuI2IXCmK.png); background-position: -14px 0px; background-repeat: no-repeat no-repeat; background-size: 28px 200px; display: inline-block; height: 12px; margin-left: -2px; margin-right: 1px; margin-top: 2px; overflow: hidden; vertical-align: top; width: 12px;"></i></a></div>
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<span class="userContent"><a aria-haspopup="true" aria-owns="js_19" data-hovercard="/ajax/hovercard/user.php?id=100003157389710" href="https://www.facebook.com/jesse.sorman" id="js_20" style="color: #3b5998; cursor: pointer; text-decoration: none;">Jesse Sorman</a> had an amazing first day of NF Awareness month with a $1000 donation, made anonymously by someone I went to high school with, to his personal fundraising page! I got all choked up this morning when I opened my email and saw the<span class="text_exposed_show" style="display: inline;"> notification. We are so thankful for every donation that gets us closer to finding effective treatments that will make Jesse's future with this progressive tumor disorder more manageable. Thank you, you know who you are! </span></span></div>
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</span><span style="color: #333333; font-size: 13px; line-height: 18px;"> </span><a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/endnf" style="color: #3b5998; cursor: pointer; font-size: 13px; line-height: 18px; text-decoration: none;">#EndNF</a></div>
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<span class="userContent"><span class="text_exposed_show" style="display: inline;"><span style="font-size: 13.63636302947998px;">NF is...unpredictable</span><br style="font-size: 13.63636302947998px;" /><span style="font-size: 13.63636302947998px;">We never know what each day will bring. Each time Jesse shows me a new lump or tells me about a new pain, my heart sinks to the bottom of my chest while I smile reassuringly and tell him, "It's probably nothing, but le</span><span class="text_exposed_show" style="display: inline; font-size: 13.63636302947998px;">t's get it checked out." I stay in this state of panic and worry until we see the specialist in question and HE/SHE reassures ME or doesn't. One day, too soon, Jesse will carry this burden of worry and uncertainty alone. For now, I carry it for him. </span></span></span></div>
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<span class="userContent">NF is..Perseverance<br /><br />Most kids with NF have the added challenge of learning disabilities (60%). They require ongoing neuropsychological evaluation throughout their education careers and often have Individualized Education Plans (IEP), whic<span class="text_exposed_show" style="display: inline;">h provide accommodations and modifications to their lessons.<br /><br />As you can see, from his middle school biography artwork, Jesse has not let this struggle define him. The words that are the largest: Animal Lover, NYY Fan, Likes Tacos, are the things that he feels most accurately describe him. The words that are the smallest: have NF, have screws in my knee and legs are different lengths are the least important descriptors.<br /><br />Although he has always had to work harder, study longer, go to summer school and relearn the same concepts repetitively, Jesse has never let his disabilities hold him back. As a high school Sophomore this year, Jesse made the honor role for the first time! That is what I call perseverance! <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/endnf" style="color: #3b5998; cursor: pointer; text-decoration: none;">#EndNF</a></span></span></div>
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<span class="userContent"><span class="userContent">NF is...Passion</span></span><br />
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<span class="userContent">We each find our separate ways to express our passion about NF. If you are Annette Bakker, President and Chief Scientific Officer of Children's Tumor Foundation, you drive research that will change the statement, "no treatm<span class="text_exposed_show" style="display: inline;">ents, no cure," to "good treatments, cured for future generations."<br /><br />If you're a parent, like I am, you post things on Facebook, Twitter and Instagram every single day. You hold fundraising events, organize Walks, attend forums and summits and councils. You get a giant tattoo on your forearm, even though you know that middle class, suburban Moms don't normally do so, just in the hopes that someone, somewhere, will ask you about it. You would proselytize from the street corners, if you thought it would make a difference, at the risk of looking like a loon. You would do anything. And that is the message that <a data-hovercard="/ajax/hovercard/user.php?id=1628083113" href="https://www.facebook.com/eobrienburke" style="color: #3b5998; cursor: pointer; text-decoration: none;">Elizabeth</a> and <a data-hovercard="/ajax/hovercard/user.php?id=1625040120" href="https://www.facebook.com/jake.burke1" style="color: #3b5998; cursor: pointer; text-decoration: none;">Jake Burke</a> convey in this video about the foundation they started to accomplish all of these things and more. <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/endnf" style="color: #3b5998; cursor: pointer; text-decoration: none;">#EndNF</a><br /><br />Please take a moment to watch. It is beautifully done, heartfelt and empowering. Today they are waiting for the results of Jack's first MRI since starting chemotherapy for a brainstem glioma; sitting on hopes and prayers that the growth has halted and even better, that there is shrinkage.<br /><br /><a href="http://%3Ciframe%20src%3D%22//player.vimeo.com/video/94480870%22%20width=%22500%22%20height=%22281%22%20webkitallowfullscreen%20mozallowfullscreen%20allowfullscreen%3E%3C/iframe%3E" target="_blank">Cure NF With Jack Video</a> </span></span></span><br />
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<span class="userContent"><span class="userContent"><span class="userContent" data-ft="{"tn":"K"}">NF is...Responsibility<br /><br />The Chosen Mothers by Erma Bombeck<br />Most women become a mother by accident,<br />some by choice and a few by habit. Did you ever wonder how mother's of children with life threatening illnesses are chosen?Somehow, I visualize God hovering over earth selecting His instruments for progagation with great care and deliberation. As He observes, He instructs His angels to make notes in<span class="text_exposed_show" style="display: inline;"> a giant ledger.......<br />"Armstrong, Beth, son, patron saint Matthew" Forrest, Marjorie, daughter, patron saint Cecilia "Rutledge, Carrie, twins, partron saint Greard."<br />Finally, He passes a name to an angel and says,<br />"Give her a child with cancer." The angel is curious.<br />"Why this one, God? She's so happy."<br />"Exactly," smiles God, "Could I give a child with cancer a mother who does not know laughter?<br />That would be cruel."<br />"But, does she have patience?" asks the angel,<br />"I don't want her to have too much patience or she will drown in a sea of self-pity and despair.<br />Once the shock and resentment<br />wears off,she will handle it."<br />I watched her today," said God.<br />"She has that feeling of self-independence that is so rare and necessary in a mother. You see, the child I'm going to give her has it's own world.<br />She has to make it live in her world and that's not going to be easy."But Lord, I don't think she believes in you," said the angel.<br />"No matter, I can fix that.<br />This one is perfect.<br />She has just enough selfishness."<br />The angel gasps, "Selfishness?<br />Is that a virtue?"<br />God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is the woman I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied.<br />She will never take anything her child does for granted.<br />She will never consider a single step ordinary. I will permit her to see clearly the things I see....ignorance,cruelty, prejudice....<br />and allow her to rise above them.<br />"And what about her patron saint" asks the angel,<br />his pen poised in mid-air.<br />God smiles and says...<br />"A mirror will suffice<br /><br />Happy Mother's Day to all of the "chosen" mothers. <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/endnf" style="color: #3b5998; cursor: pointer; text-decoration: none;">#EndNF</a></span></span></span></span></div>
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<span class="userContent"><span class="userContent"><span class="userContent" data-ft="{"tn":"K"}"><span style="font-size: 13.63636302947998px;">NF is...Uncertainty </span><br style="font-size: 13.63636302947998px;" /><br style="font-size: 13.63636302947998px;" /><span style="font-size: 13.63636302947998px;">"NF1 is a progressive disorder, which means most symptoms will worsen over time, although a small number of people may have symptoms that remain constant. It isn’t possible to predict the course of an individual’s diso</span><span class="text_exposed_show" style="display: inline; font-size: 13.63636302947998px;">rder. In general, most people with NF1 will develop mild to moderate symptoms. Most people with NF1 have a normal life expectancy. Neurofibromas on or under the skin can increase with age and cause cosmetic and psychological issues."<br /><br />This is what the doctors tell us as newly diagnosed families. I suppose this is supposed to offer us comfort. However, when this disclosure is followed by a baseline MRI and "routine" visits with a variety of specialists to "rule out" a stream of seemingly endless possibilities, it isn't ease to feel any level of comfort whatsoever.<br /><br />There are many who live with NF who never develop serious manifestations. In fact, I've met more than a few who have lived without the knowledge of having the disorder until they have passed it on to a child who has more severe complications.<br /><br />On the opposite end of the spectrum, there is the reality of those who are affected in a way that challenges our collective ability understand God's plan. Sometimes, the child struggles from the beginning of her life and then there are those who have minimal affect until that one tumor that changes everything.<br /><br />As a parent of a precious child, whose future holds such profound uncertainty, I can barely breathe even writing these words.<br /><br />Research can change the current level of uncertainty. If treatments can be found, we can all rest a bit easier and fear the future less. <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/endnf" style="color: #3b5998; cursor: pointer; text-decoration: none;">#EndNF</a></span></span></span></span></div>
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<span class="userContent"><span class="userContent"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show" style="display: inline;"><span class="userContent">NF is...Misunderstood</span></span></span></span></span><br />
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<span class="userContent">"Children with NF1 experience more problems with social skills, anxiety, depression, and aggressive behavior compared to normative means and unaffected siblings on the Child Behavior Checklist" (CBCL; Barton & North, <span class="text_exposed_show" style="display: inline;">2004; Johnson, Saal, Lovell, & Schorry, 1999).<br /><br />In addition, our children can have a variety of disfiguring and often painful conditions, such as Plexiform tumors, Optic Pathway Gliomas, Scoliosis, tibial bowing and chronic migraines. These, coupled with the non-verbal learning disabilities of immature social skills, difficulty reading social cues and taking the perspective of another person, attention and focus issues as well as rumination and perseveration, can result in social isolation.<br /><br />To put it simply, our kids aren't getting many birthday party invitations and in the later years, they are spending a lot of time alone.<br /><br />Although my son seems happy enough by himself, I can't help but want more for him. His siblings all lead typically busy social lives and have rules and curfews that will likely never apply to him. The one good friend he had was very similar to him socially and they really seemed to understand one another. But 8 months ago we moved 500 miles away from that one good friend and since then, he hasn't asked or been asked to hang out with anyone even once.<br /><br />Every adult who meets my son finds him delightful, so why is the perspective so different among his peers? His sister reports that he has a few friends that he sits with at lunch, so at least my vision of him alone at an otherwise empty table is dispelled. He's so kind, caring and sincerely concerned for others, how can these traits not appeal to the other kids? Why is he so misunderstood?<br /><br />As parents of kids with NF, we already have too many concerns; worrying about their happiness and companionship is just the icing on the cake. We have made a conscientious effort to surround our son with others in the NF community in the hopes that he will always have a place where he fits in just right. Being a teenager comes with its own set of challenges; imagine going back in time and adding physical and social/emotional burdens to all of those pre-existing insecurities. It's a little too much to process, isn't it? <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/endnf" style="color: #3b5998; cursor: pointer; text-decoration: none;">#EndNF</a></span></span></span></span></span></span></div>
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<span class="userContent"><span class="userContent"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show" style="display: inline;"><span class="userContent"><span class="userContent">NF is...Demanding<br /><br />Sometimes the demands of NF pull us away from other responsibilities: work, events, home and, yes, even our other children. I blogged about this a few months ago, and in honor of my youngest daughter's birthday today, I felt this would be a good day to re-share that post. <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/endnf" style="color: #3b5998; cursor: pointer; text-decoration: none;">#EndNF</a><br /><br /><a href="http://nfsaid.blogspot.com/2013/12/me-too.html" target="_blank">Me Too Blog</a></span></span></span></span></span></span></div>
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<span class="userContent"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show" style="display: inline;"><span class="userContent"><span class="userContent">NF...Sucks!<br /><br />It sometimes sucks the energy out of us.<br />It often sucks the joy from our hearts.<br />It sucks the childhood from our children<br />And from time to time, it even sucks our hope and our faith away and knocks us to our knees not knowing <span class="text_exposed_show" style="display: inline;">where to go from there.<br /><br />This week, NF sucked another young life away; an 8 year old life, and right now it is sucking away her parents' will to carry on.<br /><br />Dedicated to the family of Nicole on the day after they laid their baby to rest. <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/endnf" style="color: #3b5998; cursor: pointer; text-decoration: none;">#EndNF</a></span></span></span></span></span></span></div>
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<span class="userContent"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show" style="display: inline;"><span class="userContent"><span class="userContent"><span class="userContent">NF is...Spreading awareness wherever I go. <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/endnf" style="color: #3b5998; cursor: pointer; text-decoration: none;">#EndNF</a></span></span></span></span></span></span></div>
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<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show" style="display: inline;"><span class="userContent"><span class="userContent"><span style="font-size: 13.63636302947998px;">NF is...Proactivity</span></span></span></span></span></div>
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<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show" style="display: inline;"><span class="userContent"><span class="userContent"><span style="font-size: 13.63636302947998px;">Learning disabilities are a common problem in children with neurofibromatosis type 1 (NF1). Over half of children with NF1 have difficulty with academic performance, which can cause them to repeat a grade in school. A </span><span class="text_exposed_show" style="display: inline; font-size: 13.63636302947998px;">learning disability can be thought of as a short circuit or problem (dysfunction) in one or several of channels in the brain. Dysfunction in any of these channels can make it harder for a child to perform up to their potential. (<a href="http://l.facebook.com/l.php?u=http%3A%2F%2Fnfcenter.wustl.edu%2Fwhat-is-nf%2Flearning-disabilities-and-attention-deficits%2F&h=9AQFsrzwM&s=1" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">http://nfcenter.wustl.edu/what-is-nf/learning-disabilities-and-attention-deficits/</a>)<br /><br />A tumor of the nerve to the eye, called optic glioma, often emerges in early childhood, sometimes causing painful bulging of the eye and loss of vision as well as affecting pituitary hormone secretion. These types of optic gliomas are diagnosed by CT or MRI scanning and are generally responsive to radiation treatment or chemotherapy. However, it is not uncommon to find evidence by CT or MRI scan of thickening of the optic nerve in children with NF1 who manifest no outward signs or symptoms of optic glioma. These cases rarely progress to a point of requiring treatment, but all children with NF1 should have annual ophthalmologic exams to insure early diagnosis of optic glioma. (<a href="http://l.facebook.com/l.php?u=http%3A%2F%2Fwww.understandingnf1.org%2Fexp%2Fint_exp_wci.html&h=xAQEWseqJ&s=1" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">http://www.understandingnf1.org/exp/int_exp_wci.html</a>)<br /><br />In both cases, early diagnosis is key to successful intervention. As the mother of a son with NF1 and learning disabilities, and the wife of a Neuropsychologist, I am often disappointed to hear that it is not standard practice to recommend Neuropsychological evaluation early and continually in children with NF1. Jesse has been evaluated, by a board certified neuropsychologist, every three years from the age of 18 months. I attribute his academic success, despite the presence of global learning challenges, to early intervention, consistent supportive therapies and aggressive advocacy in all areas of his life. He ALWAYS exceeds our expectations and his intellectual growth under these circumstances has astounded us.<br /><br />That being said, I am a mother of a child with disabilities; I have concerns for his future. I worry that he will not fulfill his dream of becoming a Veterinary Technician. I am concerned that he will not have an income potential necessary to support the family that he envisions having. At 12 years old, Jesse asked me how much money he would need to make so that his wife could stay home to take care of their children. What I do not doubt is that he will work harder than most to achieve his goals. He discovered early on that learning is more difficult for him, but he never lets that hold him back.<br /><br />When he was very young, the local neurologist (not an NF specialist), did not recommend baseline MRI. He told us that he would order an MRI if our toddler started showing signs of neurological deficits (bumping into things more than usual, falling down, dragging a leg or having seizures, among other things). It wasn't until he was 7 years old that we understood the importance of having him seen in a designated NF clinic and began driving him to the closest one, 5 hours away. The first thing our new neurologist did was order an MRI.<br /><br />The results showed thickening of the optic nerve into the chiasm. We were anguished by this news, imagining that by not insisting on an earlier scan, we had put our son's health at risk. His regular ophthalmologic exams did not indicate nerve pallor. We were exceptionally lucky. Jesse's glioma remained mostly stable and never caused any vision loss or need for intervention.<br /><br />I cannot express passionately enough, how important it is to have every child with this progressive tumor disorder seen by NF specialists in a clinic setting where his/her health care providers will be proactive. <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/endnf" style="color: #3b5998; cursor: pointer; text-decoration: none;">#EndNF</a></span></span></span></span></span></div>
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<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show" style="display: inline;"><span class="userContent"><span class="userContent"><span class="userContent">NF is...<br /><br />We hope you can find inspiration to join our fight through this video created to raise funds and awareness for neurofibromatosis. <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/endnf" style="color: #3b5998; cursor: pointer; text-decoration: none;">#EndNF</a> <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/r4r" style="color: #3b5998; cursor: pointer; text-decoration: none;">#R4R</a><br /><br /><a href="http://ctf.kintera.org/faf/donorReg/donorPledge.asp?ievent=1099481&lis=1&kntae1099481=43F7969C7433425AA0E075E914E1EBAE&supId=406561338" target="_blank">Jesse's Racing4Research Fundraising page</a></span></span></span></span></span></div>
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<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show" style="display: inline;"><span class="userContent"><span class="userContent">NF is...Real</span></span></span></span></div>
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<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show" style="display: inline;"><span class="userContent"><span class="userContent">Real scary</span></span></span></span><br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show" style="display: inline;"><span class="userContent"><span class="userContent">Real people working hard to effect change</span></span></span></span><br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show" style="display: inline;"><span class="userContent"><span class="userContent">Real stories</span></span></span></span><br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show" style="display: inline;"><span class="userContent"><span class="userContent">Real families suffering</span></span></span></span><br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show" style="display: inline;"><span class="userContent"><span class="userContent">Real children and Real adults who deserve more answers</span></span></span></span><br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show" style="display: inline;"><span class="userContent"><span class="userContent">Real hope and Real Courage</span></span></span></span><br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show" style="display: inline;"><span class="userContent"><span class="userContent">Real life Heroes</span></span></span></span></div>
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<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show" style="display: inline;"><span class="userContent"><span class="userContent">Read about one of them below. <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/endnf?source=feed_text&story_id=10202681027484240" style="color: #3b5998; cursor: pointer; text-decoration: none;"><span class="_58cl" style="color: #6d84b4;">#</span><span class="_58cm">EndNF</span></a></span></span></span></span></div>
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<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show" style="display: inline;"><span class="userContent"><span class="userContent">At the end of this NF journey when we find a cure, my personal belief is that Dr. Bruce R. Korf will be the singularly most important reason for that cure IF we realistically could choose one person. As a desperate father who hours earlier was told that his son had NF, I scoured the internet to figure out who the top person was in the field and then email that person. It was Dr. Korf. I emailed him at 2 AM and HOPED I would hear from him soon. TWENTY MINUTES later I got a response to bring Jack to see him. At that point, I knew Jack was in good hands. I never told Bruce this story but I do today to celebrate him, his life's work and to thank him so very much. His "hero cape" is the real deal. F NF!</span></span></span></span></div>
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Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com1tag:blogger.com,1999:blog-6375249913856744161.post-1303850204203306842014-02-20T13:51:00.000-08:002014-03-02T14:10:10.860-08:00More Than Just a Race<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">Jesse with Program Director, Jill Beck</span></td></tr>
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<span style="font-family: Verdana, sans-serif;">The Rolex 24 at Daytona signifies the culmination of a year of fundraising for those of us who take part in the <a href="http://www.ctf.org/" target="_blank">Children's Tumor Foundation</a>'s <a href="http://www.ctf.org/category/r4r-blog.html" target="_blank">Racing4Research</a> program. </span><span style="font-family: Verdana, sans-serif;">Jill Beck, </span><span style="font-family: Verdana, sans-serif;">director of the program, orchestrates the ingenious plan to enable all of the participating families of "NF Heroes" to </span><span style="font-family: Verdana, sans-serif;">cheer on the foundation's racing teams </span><span style="font-family: Verdana, sans-serif;">over race weekend at the track. It started out as a few families and one logo on one car. Over the seven years since its inception, the program has grown to include 150+ families and heroes, seven racing teams and 25 drivers in two different IMSA racing series</span><span style="font-family: Verdana, sans-serif;">. It is an incredible experience and is something that we personally, </span><span style="font-family: Verdana, sans-serif;">eagerly </span><span style="font-family: Verdana, sans-serif;">look forward to each year. This year alone, the program raised over $750,000 for research.</span><br />
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<span style="font-family: Verdana, sans-serif;">Video from the 2013 event.</span></div>
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<span style="font-family: Verdana, sans-serif;">A few weeks before the Rolex 24 this year, we were visiting with our family in Florida and Jesse told a little white lie. To know Jesse at all, you would understand how profoundly out of character this was for him. Jesse has always had an undeniable desire to follow rules to the letter and often oversees that others do as well. He was drawn to super heroes as a young child, partly due to the nature by which they seek order and justice for mankind, and partly because they possess a strength and bravery that he himself has been forced to exhibit in the face of NF. He could relate to them on many levels. So, to sit at a table full of his grandparents, uncles, cousins parents and siblings and claim that going to the race in Daytona is not that important to him, I was keenly aware of the presence of an ulterior motive.</span></div>
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<span style="font-family: Verdana, sans-serif;">Our relocation to Virginia from Western New York this past summer was an obstacle to our fundraising efforts this year. In addition, I continued to act as the NF Walk Chair for the Rochester NF Walk even though our move took us out of state a month before the event. It was a busy year. Jesse's fib was actually aimed at preserving our feelings. He knew that we had not earned the prerequisite amount of money to fund our trip and that our family budget was already stretched with an unsold home in New York added to living expenses in Virginia. He's growing up and noticing things and he's a smart kid. He wanted us to believe that it was not so important to him so that if we couldn't swing the trip out-of-pocket this year, we wouldn't feel as though we were denying him. Part of me is proud of him for acting so grownup and attempting to waylay any guilt on our part, but I am also saddened by this. I'm not certain that I am ready to say so long to the days of his wide-eyed innocence on adult matters such as this. Like it or not, I have to face the fact that at 16, my little guy is maturing and will be tackling the world's problems on his own before I know. Preparing him to manage his own care is another blog post entirely! </span><span style="font-family: Verdana, sans-serif;">Despite his best attempts to convince us otherwise, we know what race weekend does for Jesse; psychologically, emotionally and physically. We are fortunate that Peter was able to take on some additional work in order to finance the trip this year. He always takes good care of us.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9UOGxGl_C0OPqdikxs0IKkeOsqKMfWFG9Z4geFID7QzytoXYyZWotasHNTZK2BSjdj2jbGwytcDUeVJxPBNN_100rLWjwNdh11zDm8BryJTAF72qhIr5zXXsXLuTogZRkjy8ox1qV_bzK/s1600/IMG_5448.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9UOGxGl_C0OPqdikxs0IKkeOsqKMfWFG9Z4geFID7QzytoXYyZWotasHNTZK2BSjdj2jbGwytcDUeVJxPBNN_100rLWjwNdh11zDm8BryJTAF72qhIr5zXXsXLuTogZRkjy8ox1qV_bzK/s1600/IMG_5448.JPG" height="213" width="320" /></a><span style="font-family: Verdana, sans-serif;">Once we arrive at the track each year, it is no mystery how this event effects our son. Between his Grandpas who come to support him and his NF family, he blossoms from being a semi-withdrawn, lone wolf into a full fledged member of a pack. He is reminded that he is a smaller part of something so much bigger than himself and not only does he fit in, but he stands out. Jill Beck has engineered the event so magically that it allows Jesse and the other heroes to shine brighter than the gold watches that encircle the winners' wrists. They get to be the celebrities for the whole weekend, while everyone, including these superstar race car drivers, is looking to impress them and give them the s</span><span style="font-family: Verdana, sans-serif;">potlight. Much like </span><a href="http://abclocal.go.com/kfsn/story?id=9315337" style="font-family: Verdana, sans-serif;" target="_blank">"Batkid"</a><span style="font-family: Verdana, sans-serif;">, 5 year old Miles Scott, was given the city of San Francisco in which to play superhero, our NF Heroes are given <a href="http://www.daytonainternationalspeedway.com/?homepage=true" target="_blank">Daytona International Speedway</a>. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS5gXThg80c8C2_Bpu0oS72R3EPs_nFJ_jk_aPqkgloDYuh-l-pBjSKv5WF5lMntsg0qdaC1lSR1rCajki3xCy1LCMVmHVCTumrGD2yFWw-_IB6shKOhyphenhyphenGrJrmhL1bbtZk45AgjLQfWbB9/s1600/IMG_5396.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS5gXThg80c8C2_Bpu0oS72R3EPs_nFJ_jk_aPqkgloDYuh-l-pBjSKv5WF5lMntsg0qdaC1lSR1rCajki3xCy1LCMVmHVCTumrGD2yFWw-_IB6shKOhyphenhyphenGrJrmhL1bbtZk45AgjLQfWbB9/s1600/IMG_5396.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">Friday night team dinner; all smiles already.</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwBkqJEsZAxLSYhtEVYknFBi2jdYOu1f4F_aXaxdzRw1pro58StyPPjClOYaW9GnYmBS3L1s-iMcmZaWjxvZL9jBKZrVSdlL4dcgxLNz445xATJwllwrMwELzGTUszF5eSoQk1aUiEMNtD/s1600/IMG_5397.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwBkqJEsZAxLSYhtEVYknFBi2jdYOu1f4F_aXaxdzRw1pro58StyPPjClOYaW9GnYmBS3L1s-iMcmZaWjxvZL9jBKZrVSdlL4dcgxLNz445xATJwllwrMwELzGTUszF5eSoQk1aUiEMNtD/s1600/IMG_5397.JPG" height="133" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">Jesse's NF buddy, Kyler.</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4NHHwoBwOeHZyS_8zVIh9zpvcZdHOUc9iTZ147JMlKIyccQT6NMhm4ctZDuuWUpzRli5HUeqfN5XXVDAq7nY2DDrkANacuU8oct34g0yQQKqKPlfene1Xbm7TI7akODz5UgcaFNcyP6NZ/s1600/IMG_5399.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4NHHwoBwOeHZyS_8zVIh9zpvcZdHOUc9iTZ147JMlKIyccQT6NMhm4ctZDuuWUpzRli5HUeqfN5XXVDAq7nY2DDrkANacuU8oct34g0yQQKqKPlfene1Xbm7TI7akODz5UgcaFNcyP6NZ/s1600/IMG_5399.JPG" height="133" width="200" /></a></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">Jesse and fellow hero/artist Jeff Hanson</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqotPghkYTzy6UM7Ckxlaq8hw2FJ5Hi3DQrLTYEJBlnb9lQUrdX2AGaPRCkyjuFBdVTLgAbZSvOTZ1ac58CnPaqYNQ9wG4oMU6AM7qGxTIiPQxMd0xsPwLhCiJFijEULKxWMst_UCiKQnP/s1600/IMG_5412.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqotPghkYTzy6UM7Ckxlaq8hw2FJ5Hi3DQrLTYEJBlnb9lQUrdX2AGaPRCkyjuFBdVTLgAbZSvOTZ1ac58CnPaqYNQ9wG4oMU6AM7qGxTIiPQxMd0xsPwLhCiJFijEULKxWMst_UCiKQnP/s1600/IMG_5412.JPG" height="133" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">Can't decide who has the dreamier smile.</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQHU4BX4CH2BG8jUcCkZ3GUWixuq9l_uut0VSJakETYjE6rlMGmSrCwoiHjeRVgu7dNZFN3sSgJcURei4Wc0m5WCtqtjwC4ZjtMOET56bIMK-CtH9g4BEhOgT5rF6pdqauEYYGz6KUaMuO/s1600/IMG_5419.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQHU4BX4CH2BG8jUcCkZ3GUWixuq9l_uut0VSJakETYjE6rlMGmSrCwoiHjeRVgu7dNZFN3sSgJcURei4Wc0m5WCtqtjwC4ZjtMOET56bIMK-CtH9g4BEhOgT5rF6pdqauEYYGz6KUaMuO/s1600/IMG_5419.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">Jesse adds his autograph to the No.73 for luck.</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVSbFNwkh_qiKN-HBxMQCJ54rknC-7TJkUDanoHBQd98uZOO3LbHbZITA_qPX471PtyoTBPYOQ7_ezs7bdUcFf7VR5UbNvUj-RL3HV4sONDMO2vsNowf53tujlerIp9HFc5NPOoNL7wGf5/s1600/IMG_5428.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVSbFNwkh_qiKN-HBxMQCJ54rknC-7TJkUDanoHBQd98uZOO3LbHbZITA_qPX471PtyoTBPYOQ7_ezs7bdUcFf7VR5UbNvUj-RL3HV4sONDMO2vsNowf53tujlerIp9HFc5NPOoNL7wGf5/s1600/IMG_5428.JPG" height="320" width="255" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">A pose with CTF driver, Mike Vess.</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJjb5IWcgbb2LMYz-fx2yaGDy2K__nYWvwUCSMZO7bXpxxTdFWZGIozZYfeb6vgBTgq7vOI_VSiW8asrp9VBQFiixVnAO7aHss_WuZ2UIj5LUoqzFc9EaWGCGyDni4-S-qsztXalfxF9ug/s1600/IMG_5430.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJjb5IWcgbb2LMYz-fx2yaGDy2K__nYWvwUCSMZO7bXpxxTdFWZGIozZYfeb6vgBTgq7vOI_VSiW8asrp9VBQFiixVnAO7aHss_WuZ2UIj5LUoqzFc9EaWGCGyDni4-S-qsztXalfxF9ug/s1600/IMG_5430.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">Kevin Estre, CTF driver autograph.</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFOXTkWdjC0kkDD4mbTKv8k8odbbpcyKfRfuoFOY145hJ09TN0_15YqQs4r55Se3saU8j79VMP2AXU2ieOom6oD-5-GWhs4pSVRxKeSd8UWuK41uvm22kSFmJpWPS4NyDQoja7XlK6q6zk/s1600/IMG_5435.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFOXTkWdjC0kkDD4mbTKv8k8odbbpcyKfRfuoFOY145hJ09TN0_15YqQs4r55Se3saU8j79VMP2AXU2ieOom6oD-5-GWhs4pSVRxKeSd8UWuK41uvm22kSFmJpWPS4NyDQoja7XlK6q6zk/s1600/IMG_5435.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">Jesse with CTF driver, Jason Hart, who is all heart.</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIN8HJh1k3dk_y64VJZ2QlEWgqyqRmwQfBVBWlzaKXnWE-shfb7QUaZQEpowHdiQQWt63au99ZIyv6G6uioc5epVodlDeUPVg8uLjmqVVes0mPvtH117P0MSbLyq3xWqBTn6DnqBamYZQd/s1600/IMG_5441.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIN8HJh1k3dk_y64VJZ2QlEWgqyqRmwQfBVBWlzaKXnWE-shfb7QUaZQEpowHdiQQWt63au99ZIyv6G6uioc5epVodlDeUPVg8uLjmqVVes0mPvtH117P0MSbLyq3xWqBTn6DnqBamYZQd/s1600/IMG_5441.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">Jr. CTF driver, Connor De Phillippi </span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdISMMKfoC3-dM8oX4reJf8_-KrfXAD6IIQJgY0FP2dvVz-tKYQqR4SrLIIZlsBBk742xwiqIRAaLupzegZ8lAknzka_9s2yrz3a0IbhGAG38d7e2yhxMO9w-uZbi_bqqeuEn_1sWyH_sS/s1600/1614547_10201983432324797_1764626738_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdISMMKfoC3-dM8oX4reJf8_-KrfXAD6IIQJgY0FP2dvVz-tKYQqR4SrLIIZlsBBk742xwiqIRAaLupzegZ8lAknzka_9s2yrz3a0IbhGAG38d7e2yhxMO9w-uZbi_bqqeuEn_1sWyH_sS/s1600/1614547_10201983432324797_1764626738_o.jpg" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">Jesse found his name on the car.</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNZpCI3hNfWp6gIHDCCVYSwkEL0uumcG6fz1bYPHFtzCKIZL7EoWZJKEJ8X85QtNMsiN5YlHn1_Ekh0Xlu23znIeAXNHDcxlT5gvDApG5KZO4EpBtblsxkCCd9t3KNyev0AwXIVXnq6dC1/s1600/IMG_5415.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNZpCI3hNfWp6gIHDCCVYSwkEL0uumcG6fz1bYPHFtzCKIZL7EoWZJKEJ8X85QtNMsiN5YlHn1_Ekh0Xlu23znIeAXNHDcxlT5gvDApG5KZO4EpBtblsxkCCd9t3KNyev0AwXIVXnq6dC1/s1600/IMG_5415.JPG" height="320" width="265" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">CTF Driver Patrick Lindsay autographing Jesse's shirt</span></td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm_yiSAz11LPEEfj6opxhWT3eUtbXYk_E7Bnh5iF5zaeZ8oz2qLWowOq_dl7qwqQCKzTH__z_F3DfRT2k01z3rrkjDIYqBkzzAQOK2OkmHo6kL4EF_vjU2Akx94eK_9c_eMszwjJdyd_x6/s1600/150263_10201989653880332_1599810953_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm_yiSAz11LPEEfj6opxhWT3eUtbXYk_E7Bnh5iF5zaeZ8oz2qLWowOq_dl7qwqQCKzTH__z_F3DfRT2k01z3rrkjDIYqBkzzAQOK2OkmHo6kL4EF_vjU2Akx94eK_9c_eMszwjJdyd_x6/s1600/150263_10201989653880332_1599810953_n.jpg" height="266" width="400" /></a><span style="font-family: Verdana, sans-serif;">All of the kids, who come to Florida for this event, are battling their own villains. NF affects each person differently; it's the nature of the beast, and as parents, we never know what will come our way tomorrow or the day after that. Of course it is true that, nobody knows what life will hand them from one moment to the next, but with NF, the chances that the something will be staggering are increased dramatically. By participating in this Racing4Research event, we are given a weekend off from life in the world of wait-and-see, </span><span style="font-family: Verdana, sans-serif;">brain surgery, </span><span style="font-family: Verdana, sans-serif;">chemotherapy,</span><span style="font-family: Verdana, sans-serif;"> spinal fusion, tumor dissection, hospital stays, </span><span style="font-family: Verdana, sans-serif;">specialist visits, follow-ups, MRIs, X-rays, therapies, bullying and every other villain that terrorizes people with Neurofibromatosis. I swear, even the kids who normally feel pain, have a respite. You can tell by looking at their faces. They are beaming; feeling pride in their drivers, elation for the cars that wear the same logo they wear on their chests, and exhilaration from the incredible energy that pulses within. It is a kind of energy that can only come from the sound of high powered machines whizzing by you at 180 miles per hour.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXG0rEdlMQDyo1VGMsLQSeEgkD2ky2YrmCslkAq30f52ieR7EGhRTof2Do9KX47CYxyM7cGBhzVeWlLarcKFq6HIFKUlQQMgWmEUBvwz0hJJHIYm4YjWPo0NjyPUuS-Ui4s3ImfpkUZ8SZ/s1600/IMG_5578.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXG0rEdlMQDyo1VGMsLQSeEgkD2ky2YrmCslkAq30f52ieR7EGhRTof2Do9KX47CYxyM7cGBhzVeWlLarcKFq6HIFKUlQQMgWmEUBvwz0hJJHIYm4YjWPo0NjyPUuS-Ui4s3ImfpkUZ8SZ/s1600/IMG_5578.JPG" height="213" width="320" /></a><br />
<span style="font-family: Verdana, sans-serif;">When the race is finished and the mighty GTD Porsche teams pull their weary drivers, crews and cars from the track, the similarity between them and our kids becomes quite evident. They both endure hardship with dignity and strong will. Jesse is rather focused at this point in the day. He singles out each driver and personally thanks them for being a part of his race to overcome the struggles of living with NF.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEia-63Y1gG7C2atCXugbUcsfKahIAtJPwjimaiP1dbWxGvhS10t6Ckl0hlzqT6hVvN6p3xUBjgj38Cr1kRj8obJyi3DxaRrj8tBzkTLFtjQS7c8lxtHDDvNNe_bBzs6-B0QU4g3hqf1CHr6/s1600/IMG_5587.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEia-63Y1gG7C2atCXugbUcsfKahIAtJPwjimaiP1dbWxGvhS10t6Ckl0hlzqT6hVvN6p3xUBjgj38Cr1kRj8obJyi3DxaRrj8tBzkTLFtjQS7c8lxtHDDvNNe_bBzs6-B0QU4g3hqf1CHr6/s1600/IMG_5587.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">Our truly devoted, longtime driver and friend, Ryan Eversley.</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnVayDtfkhUhHKEQjZXKbTx6V9YbSBdNJn8j98nZU6RraRqrV7Xs5K7td6-etzRuGMQHRjSpeqfnsxwgGc0iTtGIeNRaVt-BaTk_1qBSrs7vE87yWE943DMXBFGw1t5dmtDPzlk7X_4auo/s1600/IMG_5564.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnVayDtfkhUhHKEQjZXKbTx6V9YbSBdNJn8j98nZU6RraRqrV7Xs5K7td6-etzRuGMQHRjSpeqfnsxwgGc0iTtGIeNRaVt-BaTk_1qBSrs7vE87yWE943DMXBFGw1t5dmtDPzlk7X_4auo/s1600/IMG_5564.JPG" height="425" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif; font-size: small; text-align: left;">Jesse's name made it through; beaten, but not broken.</span></td></tr>
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Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com0tag:blogger.com,1999:blog-6375249913856744161.post-71749643576296008292014-01-15T08:03:00.000-08:002016-02-05T09:09:38.834-08:00Gearing Up for Daytona & Racing4Research: Why we volunteer.<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNs8qW7SkJUus3IGMyttaIB0mB1kHAv0FwG54y7eFk43K1grh6QuS0EcksTPxdXRBnmgHS0PpBZlLo4p9N7UaWM9Nv-tgkosANHUaSNYFR6jwfokRehW3YjRynFLMBjjTGVwzbcEop4gQZ/s1600/Jeff+Hanson.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="236" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNs8qW7SkJUus3IGMyttaIB0mB1kHAv0FwG54y7eFk43K1grh6QuS0EcksTPxdXRBnmgHS0PpBZlLo4p9N7UaWM9Nv-tgkosANHUaSNYFR6jwfokRehW3YjRynFLMBjjTGVwzbcEop4gQZ/s640/Jeff+Hanson.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="background-color: #fefefe; color: #555555; font-family: "arial" , "helvetica" , sans-serif; line-height: 18px;">The Children’s Tumor Foundation (CTF) Racing4Research (R4R) program will return with Park Place Motorsports in full flying colors this season as the team’s No. 73 Park Place Motorsports Porsche GT America will display a bright and vibrant paint scheme inspired by a signature piece of work from highly-acclaimed young artist and NF Hero Jeffrey Owen Hanson.</span></td></tr>
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<span style="font-family: "verdana" , sans-serif;">Each year, for the past four, our family has participated in the Children's Tumor Foundation's Racing4Research national program. What that means is that we register Jesse as an NF hero on the <a href="http://www.ctf.org/category/r4r-blog.html" target="_blank">website</a> and set up a personal <a href="http://ctf.kintera.org/faf/donorReg/donorPledge.asp?ievent=1053125&supid=327166497" target="_blank">donation page</a>. Then we put our creative thinking caps on and find ways to raise money for research. Every donation made and dollar earned, from the fundraisers that we organize, contributes to helping us meet our annual goals. We work hard </span><span style="font-family: "verdana" , sans-serif;">at this</span><span style="font-family: "verdana" , sans-serif;">, all year long, knowing that what we raise will have a significant impact on our son's future. It also means that we get to celebrate our successes, along with our NF family of warriors, at the program's culmination event: <i>The Rolex 24 at Daytona.</i></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDZAMsLH4ivv0N16-hStoeP12oeR3gT0PZsGr3yiwc0Lz7rKGO9v00oUTE7KKFG48WZfT1WtrtZ48TfXwyspYN-4dzY9jViNuJX8tpAm4brQXylIMxp_i0BKxwh8Y0MfD8xCmvxWbuAvKq/s1600/Daytona+2013+140.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDZAMsLH4ivv0N16-hStoeP12oeR3gT0PZsGr3yiwc0Lz7rKGO9v00oUTE7KKFG48WZfT1WtrtZ48TfXwyspYN-4dzY9jViNuJX8tpAm4brQXylIMxp_i0BKxwh8Y0MfD8xCmvxWbuAvKq/s200/Daytona+2013+140.JPG" width="200" /></a><span style="font-family: "verdana" , sans-serif;">Fundraising for a cure is a passion. When your child's future hangs in the balance, it is only natural to seek out the mechanism by which you can put the odds in his favor. <a href="http://www.ctf.org/" target="_blank">Children's Tumor Foundation</a> is that vehicle and with a 4-star rating on <a href="http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=5905#.UtW3RPRDu6M" target="_blank">Charity Navigator</a>, the highest possible rating, I know that we are working with <i>the</i> foundation that will find the cure.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaU4GdVldXV5fQxV8zOHxaw0oEmbQzorqMRpgDsnROTU6p_oEMc8Bc1ci83KhAbsLwxEKgz9wEYO1fp7baVUoWVM0S0fTz8dhOxM70y-7fu8atBIsLpgpuhAftuM583pKXD62xdIO5sJsg/s1600/CTF_Logo_118w.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: justify;"><img border="0" height="102" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaU4GdVldXV5fQxV8zOHxaw0oEmbQzorqMRpgDsnROTU6p_oEMc8Bc1ci83KhAbsLwxEKgz9wEYO1fp7baVUoWVM0S0fTz8dhOxM70y-7fu8atBIsLpgpuhAftuM583pKXD62xdIO5sJsg/s200/CTF_Logo_118w.png" width="200" /></a><span style="font-family: "verdana" , sans-serif;">I connected with Children's Tumor Foundation in 1997, when it was still called National Neurofibromatosis Foundation (NNFF). The neurologist who diagnosed my then, 6 month old, baby boy gave me the sage advice of refraining from searching NF on the internet. He told me that I would be horrified by what I would find and that if I wanted reading materials, he would provide them. Of course, I did not want to be horrified by anything in relation to my infant son. I was still post natal and breast feeding (ie. hormonally emotional; a sleep deprived mess) and reeling from the diagnosis itself. He mailed us a very large packet of materials, which I tucked in a drawer and did not even unseal for at least 6 more months. I wanted to enjoy my baby and give him my best self, not a stressed-out-what-if-filled version of me. It wasn't until Jesse was consistently delayed in meeting his milestones: sleeping, sitting, crawling, walking and talking, that I tentatively opened the package. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCjWur5tMamlD_Phf0RxaAO9_Nc8Uqayv-nDY1S5y1tWvRTemwd7uoE-jPHzxmo7UYtCRjxuR3HiQb7AFyYa3E4ofa4B_WcrZdezOfH7-F3RFMBIcF9MpqQC3I4R0H9APKVWZf52HiAtzZ/s1600/8326_1166167351756_458363_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="" border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCjWur5tMamlD_Phf0RxaAO9_Nc8Uqayv-nDY1S5y1tWvRTemwd7uoE-jPHzxmo7UYtCRjxuR3HiQb7AFyYa3E4ofa4B_WcrZdezOfH7-F3RFMBIcF9MpqQC3I4R0H9APKVWZf52HiAtzZ/s200/8326_1166167351756_458363_n.jpg" title="" width="161" /></a><span style="font-family: "verdana" , sans-serif;">It was in this package that I found a brochure from NNFF. That was when I finally went to the computer. I poured over the website (I can still picture it perfectly in my mind) and eventually found the bulletin board where I was able to compare notes, read stories and ask questions of other NF parents, because at this point, I had never met one face to face. Over the years, there were times when it was a comfort to be connected and informed and there were times when it overwhelmed me and I kept my distance. I tended to gravitate back there whenever something new would come up. I had already had two other, healthy children, so I knew what was "normal" and what was not, for the most part. Anytime I needed to check something out, I went to the NNFF-BB. This was my first experience with making NF family connections. At the time, there were no organized events in our area (Western New York), but I often thought about finding ways to participate.</span></div>
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<span style="font-family: "verdana" , sans-serif;">When Jesse was 2, I held my first fundraiser; a virtual tea party, with all of the proceeds going to the foundation. Whenever a family celebration came up, we would ask for donations in lieu of gifts. In the meantime, we continued to raise our son; focusing on the educational and developmental aspects of his disorder, which just happened to be his Daddy's area of expertise (Peter is a board certified neuropsychologist). When Jesse was 7 years old, a plexiform tumor began to grow in his right ankle and he was having recurring headaches and blurred vision. He had never had an MRI up to this point and we began to have concerns about where other tumors might be growing in his small body. We researched NF clinics that would be closest to us (Rochester had a major medical center, but no NF specialists at this point) and decided on the Cleveland Clinic in Ohio; a five hour car ride in good weather. It was at the Cleveland Clinic that we met the very first of our NF family live and in person. Her name was Sarah and she had been through so much more than Jesse had in her 4 years of life. She had a prosthetic eye, had been through chemo treatments and many other horrors. It has a way of putting things into perspective. </span></div>
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<span style="font-family: "verdana" , sans-serif;">That being said, the first MRI was ordered, tumors were found and still we were devastated. Our little boy had thickening of the left optic nerve and chasm and small tumors all down his spine in addition to the plexiform tumor in his ankle. This meant that he would need regular follow-up MRIs, which required sedation because they lasted from 4-6 hours each (head, spine, leg with and without contrast). Following each MRI, he spent several hours vomiting and thrashing. He had to go through this again after 3 months, then twice a year for two years. To date, the MRIs have been mostly stable and the tumors have not required treatment. We are very grateful for that. Once the MRIs slowed down, it was determined that the leg with the tumor was growing progressively faster than the other one and the xrays and surgical consults started up!</span></div>
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<span style="font-family: "verdana" , sans-serif;">Putting a young child through procedures like these, in addition to having him sit in a car 5 hours each way just to see his neurologist in another city, require the regular services of a neuro-ophthalmologist, orthopedic specialist, neuropsychologist and endocrinoligist (as well as many other specialists who ruled things out on a one time basis), all while watching his daily struggles with learning, PT, OT, SLT, socialization and anxiety, has a way of fueling a person's fire to help the researchers get the money they need to find a cure. [catches breath] As the new Children's Tumor Foundation President, Annette Bakker says, "It puts fire in your belly."</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGDY8mOVXO7mXArFsul-v-Du6StD65wEpbslnfE2l4vgeXTadra72oDhGAbhxmZw0ESxEEbZIPCP4v4pFrfSLBFzTVXaEoVpzDRvjwodL-v-Y9-xkp544TGTNHGa6yzQKAeI5SbBUhIzOr/s1600/312553_240969749275094_772229_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="250" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGDY8mOVXO7mXArFsul-v-Du6StD65wEpbslnfE2l4vgeXTadra72oDhGAbhxmZw0ESxEEbZIPCP4v4pFrfSLBFzTVXaEoVpzDRvjwodL-v-Y9-xkp544TGTNHGa6yzQKAeI5SbBUhIzOr/s400/312553_240969749275094_772229_n.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "verdana" , sans-serif;">Our first Rochester NF Walk in 2011</span></td></tr>
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<span style="font-family: "verdana" , sans-serif;">To date, I have organized three walks in Rochester, NY, after beginning a chapter there, which have raised close to $70,000. Our family has held a Bowling4Research event, a Charity Garage Sale and held raffles. A Dining4Research event was organized by Jesse's Auntie Danielle in Florida and many friends and family have donated on Jesse's behalf. We have participated in/or have been represented at events in New York, Florida, Washington state and Virginia and have attended NF Family Forum in four cities. <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxth_HGNJphvJ3u7h8w6PuyZzVoOGKARqRJQMb-nAld4bLIKLMeHKtdn8Qc_3lbVmSRuRm74ZKAdybBB6hUiE8DKQWljwKjBbXU8Fo3cbNUAszXEUokPiZiqNRfiTprSVO0DECj-TiMKTw/s1600/forum+2012.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxth_HGNJphvJ3u7h8w6PuyZzVoOGKARqRJQMb-nAld4bLIKLMeHKtdn8Qc_3lbVmSRuRm74ZKAdybBB6hUiE8DKQWljwKjBbXU8Fo3cbNUAszXEUokPiZiqNRfiTprSVO0DECj-TiMKTw/s320/forum+2012.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">NF Family Forum 2012~New Orleans (Jesse was a speaker at this dinner of over 500 ppl)</td></tr>
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Peter and I will volunteer at the <a href="http://www.cupidsundierun.com/" target="_blank">Cupid's Undie Run</a> in DC next month-our first! We have also done several news stories on television and in the papers in our attempts to educate others. You can see some of them on <a href="http://www.youtube.com/user/ConnieSorman/videos" target="_blank">Youtube</a>. </span></div>
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<span style="font-family: "verdana" , sans-serif;">I don't know the exact figure of how much money we have raised, but I do know that every dollar counts. With our move to Virginia this year, our fundraising did not really get off the ground as we had hoped, but we are planning a motorcycle ride event (Riding4Research) for the Spring and will do whatever else comes our way. We have the fire in our bellies and we won't stop doing whatever we can do to raise awareness (including getting tattoos) and funds so that our son can hope for a better future. We stay dedicated to this path because, in the words of Michelle Lampman, mother to Ryan, also with NF1, and my successor in Western NY:</span></div>
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<span style="font-family: "verdana" , sans-serif;">"He will have it [NF] forever. We will be battling tumors forever."</span></blockquote>
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<span style="font-family: "verdana" , sans-serif;">In ten days, we will drive to Daytona, FL to meet up with two Grandpas, a Nana and many of our NF family members to participate in the Racing4Research 2014 culminating event: </span><span style="font-family: "verdana" , sans-serif;"><a href="http://www.ctf.org/category/r4r-blog.html" target="_blank">The Rolex 24 at Daytona</a>. This year, we will be paying our own way, but even though he recently claimed that it's not true (to try to alleviate the financial pressure on us to go), this is Jesse's favorite event of all. I won't lie, it's Peter's and my favorite as well! At this event, we will rub elbows with the driving team of the No. 73 (Park Place Motors and Children's Tumor Foundation) Porsche GT. Jesse, along with all of the other NF heroes, will sign the car and take photos with the team and then we will cheer them on as they race through the night to bring us our first podium finish! My next blog entry will share our experience with you.</span></div>
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<span style="font-family: "verdana" , sans-serif;">After the Rochester <a href="http://www.ctf.org/NF-Walk/" target="_blank">NF Walk</a> 2013, I posted something on Facebook that I think does a good job of summing up our motivation for being involved in Children's Tumor Foundation and Racing4Research. It is worth repeating:</span></div>
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<span class="userContent" data-ft="{"tn":"K"}">Whenever I have opportunities to bring people within the NF community together, I always get a feeling of accomplishment. I am happy knowing that my son is growing up knowing that his burden is not his alone and that he has a whole community of amazing people around him who share his struggles.</span><span class="userContentSecondary fcg" style="color: #89919c;"> — <img alt="" class="_agk img" height="16" src="https://fbstatic-a.akamaihd.net/rsrc.php/v2/ye/r/cE4rr6y_Ckx.png" style="border: 0px; margin-right: 3px; vertical-align: -2.9px;" width="16" />feeling blessed.</span></div>
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Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com2tag:blogger.com,1999:blog-6375249913856744161.post-27127533510513239882013-12-11T10:11:00.000-08:002016-09-22T16:03:56.577-07:00Me Too<span style="font-family: "verdana" , sans-serif;"><span style="font-size: large;">I</span> have a confession and some apologies to make. I confess to feeling more sympathetic to my disabled son's needs, </span><span style="font-family: "verdana" , sans-serif;">than to my other children's. I know that the reason I have felt this way is </span><span style="font-family: "verdana" , sans-serif;">because he was given this unjust life sentence of having a progressive tumor disorder. He has had to endure endless specialist visits and procedures, has struggled with learning, has an uncertain future; so this seems perfectly natural, doesn't it? </span><br />
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<span style="font-family: "verdana" , sans-serif;">In retrospect, I have this horrible feeling of guilt (any mother's plague) for behaving this way. I keep seeing my youngest daughter's crumpled face, eyes wide, sometime around the age of three, as she pleaded with me: "Me too."</span><br />
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<span style="font-family: "verdana" , sans-serif;">It was a normal cold winter's day in our home. The older kids were at school and I was getting the younger two ready for their respective preschools. Although she is younger than her brother, I left my daughter to struggle into her snow pants, boots, hat, scarf, mittens and coat by herself. Meanwhile, I attended to my son, who could not even manage his own coat, never mind attempt snow pants and boots! I got him zipped, tucked, bundled, and.. screaming because he couldn't bear to be so confined by clothing. I didn't even notice his sister fumbling with her mittens as I hurried them out the door to get him distracted by a video in the car. She held the mitten up to me and assaulted me with her request, "Me too." In my frazzled state, I was even irritated by her incompetance!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">What kind of unrealistic expectations have you placed on your unaffected children?</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">Here is my list of transgressions:</span><br />
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<li><span style="font-family: "verdana" , sans-serif;">"You should be more patient with him because it's not his fault."</span></li>
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<blockquote class="tr_bq">
<span style="font-family: "verdana" , sans-serif;">Why is this unrealistic? First of all, ALL brothers and sisters annoy each other. How am I preparing my children, all of them, for the real world if I try to protect them from each other?</span> </blockquote>
<blockquote class="tr_bq">
<span style="font-family: "verdana" , sans-serif;">In the end, their family is going to be their safety net. If they aren't permitted to feel natural feelings of annoyance and disappointment in one another, they won't learn how to test that net. My hope would be that they would learn to cope with those feelings within the safety of their own family and take that knowledge with them into life. </span> </blockquote>
<blockquote class="tr_bq">
<span style="font-family: "verdana" , sans-serif;">Maybe, just maybe, it will teach my unaffected children how to evaluate each person they meet with a broader perspective and it could teach my affected child how to let comments and gestures from others roll off his back with a little more ease.</span></blockquote>
<span style="font-family: "verdana" , sans-serif;"> 2. "You need to figure it out on your own."</span><br />
<blockquote class="tr_bq">
<span style="font-family: "verdana" , sans-serif;">How many times have I expected my other children to tie their own shoes, attempt their own homework, find their own rides, solve their own problems, because I was "busy" with their brother? Too many times to count. </span></blockquote>
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<span style="font-family: "verdana" , sans-serif;">Although I do feel some </span><span style="font-family: verdana, sans-serif;">guilt </span><span style="font-family: verdana, sans-serif;">about this, I don't think this was entirely a bad thing. I think that often times, we are too quick to solve our children's problems for them. We don't want to see them struggle. I don't know where or when we decided to be this way, it was definitely not from our parents! I don't remember a time that I asked my parents for help with homework. Seemingly, our parents' generation knew that kids needed to struggle in order to develop their brains for critical thinking and to empower them with problem-solving skills. There are whole articles written on this topic.</span></blockquote>
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<span style="font-family: "verdana" , sans-serif;">I do regret not having more patience with them. I was so often overwhelmed by my son's needs that I often felt irritated when my other kids asked me for help. </span></blockquote>
<span style="font-family: "verdana" , sans-serif;"> 3. "I expect more from you."</span><br />
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<span style="font-family: "verdana" , sans-serif;">I saved this one for last because it is the sum and substance of it all. I may have never actually uttered these words to my children, yet there is no doubt in my mind that they know this.</span></blockquote>
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<span style="font-family: "verdana" , sans-serif;">This one is not as much of a regret for them as it is for my son. By expecting more from his siblings, I have actually expected less from him, haven't I? I have always encouraged him to work hard and be his best, yet, I fear for him more often than I do the other kids. I fear that he won't be ready for college when his peers are. I fear that he will not find a job situation that will show him compassion. I fear that the world will be cruel and unkind. I fear he will be alone, in pain, unhappy...I could fill this page with my fears.</span></blockquote>
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<span style="font-family: "verdana" , sans-serif;">Of course, I have the same <i>kinds</i> of fears for all of my children, but the feelings are so much more intense when your child is born at a disadvantage. I know in my heart, that the others are going to be just fine even though they have all had their own struggles in life. I don't have the same confidence for him. This is the most troubling aspect of all.</span></blockquote>
<span style="font-family: "verdana" , sans-serif;">Now for my apologies:</span><br />
<h4>
<span style="font-family: "verdana" , sans-serif;">To my Biggest Kids, </span></h4>
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<b><span style="font-family: "verdana" , sans-serif;"> I expected the most from you. You were so much older and in my mind, less needy. I know now that this was not the case. You were just as needy, but your needs were different. I am sorry that I may have made you feel insignificant at times. I am sorry that I made you grow up faster than you should have. I am sorry that I expected you to know certain things, to be more compassionate and to have an understanding beyond your years. Just as your brother didn't ask to have NF, you didn't ask to have a brother with special needs. I love you with every ounce of my being and wish for every happiness in your life. You are strong, you are capable and you are amazing. You are not inconsequential in any way. There are some very important life lessons that you learned by being his sibling. I don't wish to discount that, but you may, at times, have felt less important to me and for that I apologize. I never wanted you to feel that way.</span></b></blockquote>
<h4>
<span style="font-family: "verdana" , sans-serif;"> To the Baby,</span></h4>
<blockquote class="tr_bq">
<b><span style="font-family: "verdana" , sans-serif;">You may have been born last, but you were not often given the opportunity to be the baby. Having a "bother," (which you quite aptly misspelled on one his birthday cards) who needed so much attention from me, was often unfair to you. I have expected things from you that were far reaching for your age. I've expected you to take care of him, to watch out for him, to include him and to have more patience than any sister ever could. You have always risen to the occasion and have sacrificed much of your own identity to be a "good" sister. You have traveled countless miles, sat in waiting rooms, entertained your brother during recovery periods and shown compassion beyond my expectations. You have never complained about any of this and you have never expressed any wish to have it be different. I am so sorry that I didn't have more patience when you needed me also. I am sorry if you ever felt left behind. You are a special girl and you have such empathy within you; not many are given that gift. I just want you to know that I love you and respect your kindness more than I can ever express. My hope is that you will never again in your life have to say, "Me too."</span></b></blockquote>
<span style="font-family: "verdana" , sans-serif;">My confessions are made and my apologies have been expressed. Do I think that with hindsight, things would have been any different? Absolutely not. We are human beings. We do the best we can in any given situation. Having a child with NF can be very stressful on so many levels. We have to cut ourselves some slack because our expectations of ourselves are often the most unrealistic. We find ways to make all of our children feel valued and loved, but the truth is that circumstances determine who needs the most from us and our other kids find their way. They learn to be stronger and to have more compassion for others. They are better equipped in life than their peers. Perhaps they need special times alone with us to compensate, but what I say to that is: "Me too." It's a win/win situation. </span><br />
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Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com0tag:blogger.com,1999:blog-6375249913856744161.post-81205895012806699512013-12-07T08:25:00.000-08:002013-12-07T08:25:14.411-08:00Alli-Sunshine<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Verdana, sans-serif; font-size: x-large;">T</span><span style="font-family: Verdana, sans-serif;">wo years ago, I noticed a teen-ager looking to make NF connections on Facebook. This conversation ensued:</span><br />
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<strong class="_36" style="display: block; font-size: 13px; line-height: 1; margin: 1px 0px 4px;"><a aria-haspopup="true" aria-owns="js_150" data-hovercard="/ajax/hovercard/hovercard.php?id=100000858881620&extragetparams=%7B%7D" href="https://www.facebook.com/allison.sovie" id="js_151" style="color: #3b5998; cursor: pointer; text-decoration: none;">Allison Sovie</a></strong><br />
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I I got your friend request is it ok if I talk to you before I accept your friend request I just get kinda nervous about this stuff ..</div>
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<a data-reactid=".r[57lwt]" href="https://www.facebook.com/connie.b.sorman" style="color: #3b5998; cursor: pointer; text-decoration: none;"><img alt="Connie Brisson Sorman" class="img _50dv" data-reactid=".r[57lwt].[0]" height="32" src="https://fbcdn-profile-a.akamaihd.net/hprofile-ak-prn2/s32x32/1118742_1155079716_1619477096_q.jpg" style="border: 0px; display: block;" width="32" /></a></div>
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Absolutely. I saw you were asking for other pages with discussions about NF. I'm the president of the Western NY chapter of CTF and I am always involved in discussions about NF. I have a 14 year old son with NF1-Jesse.</div>
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<strong class="_36" style="display: block; font-size: 13px; line-height: 1; margin: 1px 0px 4px;"><a data-hovercard="/ajax/hovercard/hovercard.php?id=100000858881620&extragetparams=%7B%7D" href="https://www.facebook.com/allison.sovie" style="color: #3b5998; cursor: pointer; text-decoration: none;">Allison Sovie</a></strong><br />
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Alright thank you ! I am 14 years old freshman in high school my doctors don't know what type of nf I have and I am the only one in my family with nf ... .. I'm not really involved with nf stuff but I want to be !!!! Not many people know about it where I live .. I want to teach people about nf</div>
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<a data-reactid=".r[ubd6]" href="https://www.facebook.com/connie.b.sorman" style="color: #3b5998; cursor: pointer; text-decoration: none;"><img alt="Connie Brisson Sorman" class="img _50dv" data-reactid=".r[ubd6].[0]" height="32" src="https://fbcdn-profile-a.akamaihd.net/hprofile-ak-prn2/s32x32/1118742_1155079716_1619477096_q.jpg" style="border: 0px; display: block;" width="32" /></a></div>
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Well perhaps you can join in one of our chapter activities and get to know some others with NF. </div>
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<a aria-label="Sent from Mobile" class="mrs _9k" data-hover="tooltip" href="https://www.facebook.com/mobile/" role="button" style="color: #3b5998; cursor: default; display: inline-block; margin-right: 5px; text-decoration: none; vertical-align: middle;"><img alt="" class="img _9j" height="1" src="https://fbstatic-a.akamaihd.net/rsrc.php/v2/y4/r/-PAXP-deijE.gif" style="background-image: url(https://fbstatic-a.akamaihd.net/rsrc.php/v2/yN/r/02SajjNp4g6.png); background-position: -21px -169px; background-repeat: no-repeat no-repeat; background-size: auto; border: 0px; cursor: pointer; display: inline-block; height: 13px; vertical-align: middle; width: 8px;" width="1" /></a><a class="_b9" data-hovercard-instant="1" data-hovercard-offset-x="-18" href="http://www.blogger.com/blogger.g?blogID=6375249913856744161" role="button" style="color: #3b5998; cursor: default;"><abbr class="_35 timestamp" data-utime="1320720425.118" style="border-bottom-style: none; color: #bfbfbf; display: inline-block; vertical-align: middle;" title="November 7, 2011">11/7, 9:47pm</abbr></a><br />
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<strong class="_36" style="display: block; font-size: 13px; line-height: 1; margin: 1px 0px 4px;"><a data-hovercard="/ajax/hovercard/hovercard.php?id=100000858881620&extragetparams=%7B%7D" href="https://www.facebook.com/allison.sovie" style="color: #3b5998; cursor: pointer; text-decoration: none;">Allison Sovie</a></strong><br />
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I would love to join in on that stuff !</div>
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<span style="font-family: Verdana, sans-serif;">I didn't hear from Allison again for an entire year, but when I did, a connection was made that bound us together for all time.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<br />
<div style="-webkit-text-size-adjust: auto; -webkit-text-stroke-width: 0px; color: black; font-family: Helvetica; font-size: medium; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-align: -webkit-auto; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;">
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<div style="-webkit-line-break: after-white-space; -webkit-nbsp-mode: space; -webkit-text-size-adjust: auto; -webkit-text-stroke-width: 0px; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-align: -webkit-auto; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; word-wrap: break-word;">
<div style="-webkit-line-break: after-white-space; -webkit-nbsp-mode: space; -webkit-text-size-adjust: auto; -webkit-text-stroke-width: 0px; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-align: -webkit-auto; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; word-wrap: break-word;">
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<span style="font-family: Verdana, sans-serif;">As NF advocates and Children's Tumor Foundation volunteers, we are often the first NF affected person with which a new family has contact. We have this awesome responsibility of giving each one a memorable first impression. Whether we foster that friendship ourselves or make a connection to another individual with similar circumstances, we are in the business of building relationships. Sometimes these relationships are brief and sometimes they are lasting, like the one I have with Allison.</span></div>
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<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">As a 14 year old, Allison Sovie became curious about meeting
other people with NF. Being from a small town near Binghamton, NY, she didn’t
have much knowledge about her diagnosis and had never met another person with
the disorder. On November 7, 2011, she posted on Facebook looking for
information. I requested her as a friend and, because she is a wise and responsible
girl and I was a stranger at that point, she asked me a few questions before
accepting my request.<span style="mso-spacerun: yes;"> </span>We had a brief,
online conversation, and then I didn’t hear from her again for almost a year. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">On October 30, 2012, she emailed me through Facebook for
advice about her symptoms, her friendships, and how to incorporate NF into her
everyday life. She felt ashamed and isolated with her diagnosis and wanted to
make changes. It took a lot of courage for her to make contact and begin the
process.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">We quickly struck up a friendship and graduated from
Facebook messaging to texting, and eventually she gathered the courage to FaceTime
with me, my son Jesse (who has NF), and my daughter Alexa. That was the first
time that she ever spoke to another person with neurofibromatosis.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Verdana, sans-serif;">After weeks of complaining about persistent headaches and
clumsiness, I told her about the NF Clinic in Rochester and her mom made an
appointment. Luckily, they moved quickly because Dr. Mulbury didn’t agree with Allison's
previous neurologist’s opinion that the tumor on her cerebellum was stable. She
immediately ordered an MRI and set up a consultation with the neurosurgeon at
the Clinic. It was decided that Allison needed to have the tumor removed.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIGJiHoUA4X3rlbgR7okSIR-tlf1zGNP0RJ01ES0gFpWGwcb0wYPm0TzCWO5q2wpYiBTGWAEzF0yJJnxHBQ2f4r6RUl0b_32OjvsvQENgW0pPl0cqK1J4Ebk1zOT_iitSlY1D4T-yWSP__/s1600/tumor.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIGJiHoUA4X3rlbgR7okSIR-tlf1zGNP0RJ01ES0gFpWGwcb0wYPm0TzCWO5q2wpYiBTGWAEzF0yJJnxHBQ2f4r6RUl0b_32OjvsvQENgW0pPl0cqK1J4Ebk1zOT_iitSlY1D4T-yWSP__/s400/tumor.jpg" width="298" /></a></div>
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<span style="font-family: Verdana, sans-serif;">The first time we met face-to-face was in the waiting room of the URMC NF Clinic. My initial thought was about how tiny and fragile she seemed. Although we had been communicating for months by now, she was very quiet and shy. Granted, she had a lot of information to process that day: brain surgery, tumor growth, a new NF doctor, and meeting me for the first time, yet even with all of that on her mind, all she wanted from me was a hug. I was happy to oblige. </span></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjq9lClMpt9dzA4m5rWmNGxkQqY9qZpwAt5mrJ3v55mlT1aTnLz5FHkha0uUZsms1QiS7FhzwGFywbcp3Xm5fe8DM7nyOKDdtBRDh7Ftku2G688gJAkipIlXNHfF7T4VlTeTsG6Vr98ZU1P/s1600/1002834_10200588130043112_293961069_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjq9lClMpt9dzA4m5rWmNGxkQqY9qZpwAt5mrJ3v55mlT1aTnLz5FHkha0uUZsms1QiS7FhzwGFywbcp3Xm5fe8DM7nyOKDdtBRDh7Ftku2G688gJAkipIlXNHfF7T4VlTeTsG6Vr98ZU1P/s1600/1002834_10200588130043112_293961069_n.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">Allison and I at the NF Forum Nashville, TN Walk 2013</span></td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Before the surgery, Allison and her mom, Tracy, were lucky
enough to attend CTF's 2013 NF Forum in Nashville through a grant from the </span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><a href="http://www.nfracers.org/" target="_blank">NF R.A.C.E.R.S.</a>, an organization formulated to grant assistance to NF families living in New York who are in need. At the Forum, both Allison and Tracy were able to connect with many other
families and individuals with NF and make new friends.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Allison’s surgery and recovery took place over this past
summer. She is doing well and will continue to be monitored with regular MRIs.<o:p></o:p></span></div>
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<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Just a year ago, I didn’t even know Alli-Sunny, as I refer to her. Now, because
she was brave and curious and overcame her fears of learning more about NF, she
and I are inseparable. I care for Allison as if she were family. She is kind
and sweet and smart and funny. I am so happy that Allison reached out to me and
to others in the NF community. Now she can walk with her head held high and
feel no shame about her diagnosis. She is a true NF Hero.</span><o:p></o:p></div>
<br />
<br />Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com0tag:blogger.com,1999:blog-6375249913856744161.post-4068327233698122002013-11-21T18:27:00.000-08:002016-03-04T12:48:54.397-08:00Short of Breath<div style="orphans: 2; widows: 2;">
<div class="vk_ans" style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: xx-large !important; margin-bottom: 0px; orphans: auto; widows: auto;">
com·mu·ni·ty</div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: small; line-height: 15px; orphans: auto; widows: auto;">
<div class="lr_dct_ent_ph" style="font-size: large;">
<span class="lr_dct_ph">kəˈmyo͞onitē/</span><span class="lr_dct_spkr lr_dct_spkr_off" data-log-string="pronunciation-icon-click" jsaction="dob.p" style="display: inline-block; height: 16px; margin: 0px 2px 4px 5px; opacity: 0.55; vertical-align: middle; width: 16px;" title="Listen"><input height="16" src="data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAABAAAAAQCAYAAAAf8/9hAAAAcUlEQVQ4y2P4//8/AyUYQhAH3gNxA7IAIQPmo/H3g/QA8XkgFiBkwHyoYnRQABVfj88AmGZcTuuHyjlgMwBZM7IE3NlQGhQe65EN+I8Dw8MLGgYoFpFqADK/YUAMwOsFigORatFIlYRElaRMWmaiBAMAp0n+3U0kqkAAAAAASUVORK5CYII=" style="height: 16px; width: 16px;" type="image" width="16" /></span></div>
<div>
<div class="lr_dct_sf_h" style="padding-top: 10px;">
<i>noun</i></div>
<div class="xpdxpnd vk_gy" data-mh="-1" style="-webkit-transition: max-height 0.3s; color: rgb(135, 135, 135) !important; max-height: 0px; overflow: hidden; transition: max-height 0.3s;">
<b></b><b></b></div>
<ol class="lr_dct_sf_sens" style="border: 0px; margin: 0px; padding: 0px 0px 0px 20px;">
<li style="border: 0px; line-height: 1.2; list-style: none; margin: 0px; padding: 0px;"><div class="lr_dct_sf_sen vk_txt" style="padding-top: 10px;">
<div style="float: left;">
<strong>1</strong>.</div>
<div style="margin-left: 20px;">
<div>
<div style="display: inline;">
a group of people living in the same place or having a particular characteristic in common.</div>
<div class="vk_gy" style="color: rgb(135, 135, 135) !important;">
"Rhode Island's Japanese community"</div>
<div>
<table class="vk_tbl vk_gy" style="border-collapse: collapse; color: rgb(135, 135, 135) !important;"><tbody>
<tr><td class="lr_dct_nyms_ttl" style="font-style: italic; padding: 0px 3px 0px 0px; vertical-align: top; white-space: nowrap;">synonyms:</td><td style="padding: 0px;"><a href="https://www.google.com/search?client=safari&rls=en&q=define+group&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CDAQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;">group</a>, <a href="https://www.google.com/search?client=safari&rls=en&q=define+body&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CDEQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;">body</a>, <a href="https://www.google.com/search?client=safari&rls=en&q=define+set&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CDIQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;">set</a>, <a href="https://www.google.com/search?client=safari&rls=en&q=define+circle&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CDMQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;">circle</a>, <a href="https://www.google.com/search?client=safari&rls=en&q=define+clique&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CDQQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;">clique</a>, <a href="https://www.google.com/search?client=safari&rls=en&q=define+faction&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CDUQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;">faction</a>; <span data-log-string="synonyms-more-click" jsaction="dob.m"><span class="lr_dct_more_btn" style="color: #1122cc; cursor: pointer; padding-left: 4px;">More</span></span><br />
<div style="display: inline;">
<div style="display: inline;">
<div class="lr_dct_more_txt xpdxpnd xpdnoxpnd" data-mh="-1" style="-webkit-transition: max-height 0.3s; max-height: 0px; overflow: hidden; transition: max-height 0.3s;">
<span data-log-string="synonyms-more-click" jsaction="dob.m"><i style="padding-right: 4px;"></i><a href="https://www.google.com/search?client=safari&rls=en&q=define+gang&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CDcQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;"></a><a href="https://www.google.com/search?client=safari&rls=en&q=define+bunch&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CDgQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;"></a></span></div>
<div class="lr_dct_more_blk xpdxpnd xpdnoxpnd vk_gy" data-mh="-1" style="-webkit-transition: max-height 0.3s; max-height: 0px; overflow: hidden; transition: max-height 0.3s;">
</div>
</div>
</div>
<span data-log-string="synonyms-more-click" jsaction="dob.m">
</span></td></tr>
</tbody></table>
</div>
</div>
<div style="margin-left: -25px;">
<ul style="border: 0px; margin: 0px; padding: 0px;">
<li class="xpdxpnd" data-mh="-1" style="-webkit-transition: max-height 0.3s; border: 0px; line-height: 1.2; list-style: none; margin: 0px; max-height: 0px; overflow: hidden; padding: 0px; transition: max-height 0.3s;"><div class="lr_dct_sf_subsen" style="display: list-item; font-size: xx-small; list-style-type: disc; margin-left: 25px; padding-top: 5px;">
<div style="font-size: small;">
<div style="display: inline;">
</div>
<div class="vk_gy" style="color: rgb(135, 135, 135) !important;">
</div>
<div>
<table class="vk_tbl vk_gy" style="border-collapse: collapse; color: rgb(135, 135, 135) !important;"><tbody>
<tr><td class="lr_dct_nyms_ttl" style="font-style: italic; padding: 0px 3px 0px 0px; vertical-align: top; white-space: nowrap;"></td><td style="padding: 0px;"><a href="https://www.google.com/search?client=safari&rls=en&q=define+brotherhood&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CDkQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;"></a><a href="https://www.google.com/search?client=safari&rls=en&q=define+sisterhood&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CDoQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;"></a><a href="https://www.google.com/search?client=safari&rls=en&q=define+fraternity&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CDsQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;"></a><a href="https://www.google.com/search?client=safari&rls=en&q=define+sorority&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CDwQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;"></a><a href="https://www.google.com/search?client=safari&rls=en&q=define+sodality&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CD0Q_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;"></a><span data-log-string="synonyms-more-click" jsaction="dob.m"><span class="lr_dct_more_btn" style="color: #1122cc; cursor: pointer; padding-left: 4px;"></span></span><br />
<div style="display: inline;">
<div style="display: inline;">
<div class="lr_dct_more_txt xpdxpnd xpdnoxpnd" data-mh="-1" style="-webkit-transition: max-height 0.3s; max-height: 0px; overflow: hidden; transition: max-height 0.3s;">
<span data-log-string="synonyms-more-click" jsaction="dob.m"><a href="https://www.google.com/search?client=safari&rls=en&q=define+order&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CD8Q_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;"></a><a href="https://www.google.com/search?client=safari&rls=en&q=define+congregation&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CEAQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;"></a><a href="https://www.google.com/search?client=safari&rls=en&q=define+abbey&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CEEQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;"></a><a href="https://www.google.com/search?client=safari&rls=en&q=define+convent&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CEIQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;"></a></span></div>
<div class="lr_dct_more_blk xpdxpnd xpdnoxpnd vk_gy" data-mh="-1" style="-webkit-transition: max-height 0.3s; max-height: 0px; overflow: hidden; transition: max-height 0.3s;">
</div>
</div>
</div>
<span data-log-string="synonyms-more-click" jsaction="dob.m">
</span></td></tr>
</tbody></table>
</div>
</div>
</div>
</li>
<li class="xpdxpnd" data-mh="-1" style="-webkit-transition: max-height 0.3s; border: 0px; line-height: 1.2; list-style: none; margin: 0px; max-height: 0px; overflow: hidden; padding: 0px; transition: max-height 0.3s;"><div class="lr_dct_sf_subsen" style="display: list-item; font-size: xx-small; list-style-type: disc; margin-left: 25px; padding-top: 5px;">
<div style="font-size: small;">
<div style="display: inline;">
</div>
<div class="vk_gy" style="color: rgb(135, 135, 135) !important;">
</div>
<div>
<table class="vk_tbl vk_gy" style="border-collapse: collapse; color: rgb(135, 135, 135) !important;"><tbody>
<tr><td class="lr_dct_nyms_ttl" style="font-style: italic; padding: 0px 3px 0px 0px; vertical-align: top; white-space: nowrap;"></td><td style="padding: 0px;"><a href="https://www.google.com/search?client=safari&rls=en&q=define+district&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CEMQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;"></a><a href="https://www.google.com/search?client=safari&rls=en&q=define+region&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CEQQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;"></a><a href="https://www.google.com/search?client=safari&rls=en&q=define+zone&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CEUQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;"></a><a href="https://www.google.com/search?client=safari&rls=en&q=define+area&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CEYQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;"></a><a href="https://www.google.com/search?client=safari&rls=en&q=define+locality&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CEcQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;"></a><a href="https://www.google.com/search?client=safari&rls=en&q=define+locale&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CEgQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;"></a><a href="https://www.google.com/search?client=safari&rls=en&q=define+neighborhood&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CEkQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;"></a><span data-log-string="synonyms-more-click" jsaction="dob.m"><span class="lr_dct_more_btn" style="color: #1122cc; cursor: pointer; padding-left: 4px;"></span></span><br />
<div style="display: inline;">
<div style="display: inline;">
<div class="lr_dct_more_txt xpdxpnd xpdnoxpnd" data-mh="-1" style="-webkit-transition: max-height 0.3s; max-height: 0px; overflow: hidden; transition: max-height 0.3s;">
<span data-log-string="synonyms-more-click" jsaction="dob.m"><i style="padding-right: 4px;"></i><a href="https://www.google.com/search?client=safari&rls=en&q=define+hood&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CEsQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;"></a></span></div>
<div class="lr_dct_more_blk xpdxpnd xpdnoxpnd vk_gy" data-mh="-1" style="-webkit-transition: max-height 0.3s; max-height: 0px; overflow: hidden; transition: max-height 0.3s;">
</div>
</div>
</div>
<span data-log-string="synonyms-more-click" jsaction="dob.m">
</span></td></tr>
</tbody></table>
</div>
</div>
</div>
</li>
<li class="xpdxpnd" data-mh="-1" style="-webkit-transition: max-height 0.3s; border: 0px; line-height: 1.2; list-style: none; margin: 0px; max-height: 0px; overflow: hidden; padding: 0px; transition: max-height 0.3s;"><div class="lr_dct_sf_subsen" style="display: list-item; font-size: xx-small; list-style-type: disc; margin-left: 25px; padding-top: 5px;">
<div style="font-size: small;">
<div style="display: inline;">
</div>
<div class="vk_gy" style="color: rgb(135, 135, 135) !important;">
</div>
</div>
</div>
</li>
<li class="xpdxpnd" data-mh="-1" style="-webkit-transition: max-height 0.3s; border: 0px; line-height: 1.2; list-style: none; margin: 0px; max-height: 0px; overflow: hidden; padding: 0px; transition: max-height 0.3s;"><div class="lr_dct_sf_subsen" style="display: list-item; font-size: xx-small; list-style-type: disc; margin-left: 25px; padding-top: 5px;">
<div style="font-size: small;">
<div style="display: inline;">
</div>
<div class="vk_gy" style="color: rgb(135, 135, 135) !important;">
<b></b></div>
<div class="vk_gy" style="color: rgb(135, 135, 135) !important;">
</div>
<div>
<table class="vk_tbl vk_gy" style="border-collapse: collapse; color: rgb(135, 135, 135) !important;"><tbody>
<tr><td class="lr_dct_nyms_ttl" style="font-style: italic; padding: 0px 3px 0px 0px; vertical-align: top; white-space: nowrap;"></td><td style="padding: 0px;"><a href="https://www.google.com/search?client=safari&rls=en&q=define+public&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CEwQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;"></a><a href="https://www.google.com/search?client=safari&rls=en&q=define+populace&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CE0Q_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;"></a><a href="https://www.google.com/search?client=safari&rls=en&q=define+people&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CE4Q_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;"></a><a href="https://www.google.com/search?client=safari&rls=en&q=define+population&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CE8Q_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;"></a><a href="https://www.google.com/search?client=safari&rls=en&q=define+collective&sa=X&ei=RLuOUtrMOPPnsATXjoCgBg&ved=0CFAQ_SowAA" style="color: #660099; cursor: pointer; text-decoration: none;"></a><span data-log-string="synonyms-more-click" jsaction="dob.m"><span class="lr_dct_more_btn" style="color: #1122cc; cursor: pointer; padding-left: 4px;"></span></span><br />
<div style="display: inline;">
<div style="display: inline;">
<div class="lr_dct_more_txt xpdxpnd xpdnoxpnd" data-mh="-1" style="-webkit-transition: max-height 0.3s; max-height: 0px; overflow: hidden; transition: max-height 0.3s;">
</div>
<div class="lr_dct_more_blk xpdxpnd xpdnoxpnd vk_gy" data-mh="-1" style="-webkit-transition: max-height 0.3s; max-height: 0px; overflow: hidden; transition: max-height 0.3s;">
</div>
</div>
</div>
<span data-log-string="synonyms-more-click" jsaction="dob.m">
</span></td></tr>
</tbody></table>
</div>
</div>
</div>
</li>
<li class="xpdxpnd" data-mh="-1" style="-webkit-transition: max-height 0.3s; border: 0px; line-height: 1.2; list-style: none; margin: 0px; max-height: 0px; overflow: hidden; padding: 0px; transition: max-height 0.3s;"><div class="lr_dct_sf_subsen" style="display: list-item; font-size: xx-small; list-style-type: disc; margin-left: 25px; padding-top: 5px;">
<div style="font-size: small;">
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<strong>2</strong>.</div>
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a feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals.</div>
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"the sense of community that organized religion can provide"</div>
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<span style="font-family: "verdana" , sans-serif;"><span style="font-size: large;">T</span>his is the follow up to my Facebook post last night. As I learned of the demise of another, very young NF warrior and read the pleas for prayer from the mother of a young woman, who will likely not last the week, I felt short of breath. Because I couldn't think of anything uplifting to share with my beloved NF support system, the community I have depended on for so many different levels of support, I simply stated: </span><br />
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<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="background-color: #f3f3f3;"><span style="font-family: "verdana" , sans-serif;">"</span><span style="font-family: "lucida grande" , "tahoma" , "verdana" , "arial" , sans-serif; line-height: 18px;">Feeling sick and sad. Too many young people being taken before their time. A cure needs to be found. I want to feel fueled to the cause, but I can only feel short of breath at the moment."</span></span></blockquote>
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<span style="font-family: "verdana" , sans-serif;">There were a variety of responses to my post, but I will address those later. I wrote what I did, shared how I was feeling, because I needed to be honest. I felt deflated and panicked and angry and sad. I did not feel inspired. I did not want to run out and find a way to raise more money or more awareness. All I wanted to do was crawl under my covers and cry. </span><br />
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<span style="font-family: "verdana" , sans-serif;">I found myself on the internet searching MPNST and recalling the two new plexiforms on my son's body (although I know he was born with them, they did not appear until more recently than the first one); driving myself frantic with worry that it would happen to him too. I emailed a friend, a very courageous woman I have come to know through my community of heroes, to ask her for the details of her teen-aged son's MPNST survival. Early detection. Even the mother of the withering young girl was posting desperate advice:</span><br />
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<span style="font-size: x-small;"><span data-reactid=".r[4tqdn].[1][3][1]{comment10151996869837210_10151997394272210}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]" style="background-color: #edeff4; color: #333333; font-family: "lucida grande" , "tahoma" , "verdana" , "arial" , sans-serif; line-height: 14px;">"Don't be fooled like us into thinking your safe just get checked often at least yearly if not more especially if you have plexiforms. </span><br data-reactid=".r[4tqdn].[1][3][1]{comment10151996869837210_10151997394272210}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="background-color: #edeff4; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px; orphans: 2; widows: 2;" /><span data-reactid=".r[4tqdn].[1][3][1]{comment10151996869837210_10151997394272210}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3]" style="background-color: #edeff4; color: #333333; font-family: "lucida grande" , "tahoma" , "verdana" , "arial" , sans-serif; line-height: 14px;">She started showing signs at school in Feb. She had just had a surgery so we thought they were fallout from that. We went to drs in July. Sent to oncologist in aug who told us it wasn't cancer. 3 weeks later in hospital emergency because she couldn't feel her groin area. Mri saw softball tumor eating through her sacrum into tailbone. We found out after 3 weeks of tests and drs that it was inoperable so we tried chemo pill votrient and radiation. Nothing helped only speed it. She hasn't gotten out of bed now for almost 2 months even with a pain pump implanted and morphine and neurontin etc. She hasn't gotten a break since and everything that can go wrong has. From diagnosis is been 2 1/2 months."</span></span></blockquote>
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<span style="font-family: "verdana" , sans-serif;">I would be foolish not to be panicked, right? If it could happen to their children, why not mine? Why should I think I am more fortunate than they are? The truth is that these feelings have been building since Jesse entered adolescence and his hormones started their rage. I've been warned all of his life that this is the period of tumor growth and changes. The specialists all have the same approach. If there are no symptoms, such as cognitive changes, rapid growth, pain, falling down, bumping into things…then we watch and we wait. I get that. I don't want to unnecessarily subject my son to additional testing and scans, but once there are symptoms, when the tumors are differentiated, isn't that sometimes too late???</span><br />
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<span style="font-family: "verdana" , sans-serif;">I am not, by nature, a worrier. I'm usually pretty evenly keeled. My advice to others has always been, " Do not lose sleep over things that haven't yet happened, and may never happen." </span><span style="background-color: white; orphans: 2; widows: 2;"><span style="font-family: "lucida grande" , "tahoma" , "verdana" , "arial" , sans-serif;"><span style="line-height: 14px;">That's good advice. So why was I losing it?</span></span></span><span style="background-color: white; font-family: "lucida grande" , "tahoma" , "verdana" , "arial" , sans-serif; line-height: 14px;"> My breath was caught in my chest and my heart was heavy. </span><br />
<span style="background-color: white; font-family: "lucida grande" , "tahoma" , "verdana" , "arial" , sans-serif; line-height: 14px;"><br /></span>
<span style="line-height: 14px;"><span style="font-family: "verdana" , sans-serif;">Being very involved with the NF community gives me the opportunity to be supportive to others and receive their support in return. Yet, being so attuned also exposes me to the horrors of this monstrous disorder. When Jesse was very young, in the days of the NNFF bulletin board as a way of sharing within the community, I waxed and waned in my participation. If he was stable and I felt secure, I stayed away. If something new came up and I felt anxious, I engaged. This could lead to additional anxiety or it could offer comfort, depending on the severity of the symptoms. In those days, I was not a very active volunteer and I didn't know many others on a personal level who were affected by NF. The fundraising and awareness I initiated was with family and friends. I could be involved as much or as little as I wanted to be. </span></span><br />
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<span style="line-height: 14px;"><span style="font-family: "verdana" , sans-serif;">Over the past 8 years, with the onset of more of the physical manifestations, I have gradually taken on a greater roll in order to feel more empowered over this beast. In general, being active has served me well. It has given me more of a sense of control over the thing of which I actually have no control at all. Last night, that fact hit me square in the face.</span></span><br />
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<span style="line-height: 14px;"><span style="font-family: "verdana" , sans-serif;">I am still reeling from the untimely death of dear, sweet Gavi. At 22 years old, Gavi and his parents attended the first NF Walk that I organized in Rochester, NY. Although I had met his parents a few times, this was my first time meeting Gavi. He was a bit older, but he was so much like Jesse. Mutual friends of ours who had known his family since he was very young, often remarked about how similar they were in appearance and in demeanor. He had a beaming smile that drew you in and encouraged you to approach him, yet when you did, he was somewhat apprehensive if he didn't know you well. Once you engaged him in conversation, he was charming and delightful. Gavi was the kind of person that everyone liked. There was nothing abrasive or offensive about him. I remember him buying raffle tickets by the armful. He said that many of his friends had given him money to buy the tickets for them even though they couldn't attend the walk. He kept winning and winning and his smile beamed bigger and brighter. </span></span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYxD4saUPp0DmEMt5rf3ZqXqlrzwf1Dmhf7zSu3b8ImwVV79ak2CYElFcyvcNcAMX7SHAmyopRpJhNsUOXjnFCBpTR-gKe0RMMocC6cUmThpEf-zTCr0YwFu1e6pa8SxZWR9iAQ1mX4TfB/s1600/267250_230533713652031_6188165_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: "verdana" , sans-serif;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYxD4saUPp0DmEMt5rf3ZqXqlrzwf1Dmhf7zSu3b8ImwVV79ak2CYElFcyvcNcAMX7SHAmyopRpJhNsUOXjnFCBpTR-gKe0RMMocC6cUmThpEf-zTCr0YwFu1e6pa8SxZWR9iAQ1mX4TfB/s400/267250_230533713652031_6188165_n.jpg" width="400" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "verdana" , sans-serif; font-size: x-small;">Jeff, Lyn and Gavi at the 1st Annual NF Walk Rochester, NY</span></td></tr>
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<span style="line-height: 14px;"><span style="font-family: "verdana" , sans-serif;">Also attending the walk, was the new NF specialist in town. Dr. Mulbury was making her debut in the greater NF community that day and introducing the presence of a budding clinic that was so badly needed in the area. Gavi's family chatted with Dr. Mulbury and she encouraged them to come in since Gavi had been symptom free for many years and had not been examined by an NF doctor in that time. During that exam, it was decided that they would conduct a baseline MRI just to keep on file…</span></span><br />
<span style="line-height: 14px;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span>
<span style="line-height: 14px;"><span style="font-family: "verdana" , sans-serif;">It wasn't until after his resection surgery that I learned that the MRI revealed a brainstem tumor and that the tumor was growing over the 9 months that they monitored it. They attended a bowling event that I held in January (just prior to the decision to excise) and they didn't mention it. They were pretty private people. We were collecting items for a teen in our chapter who was going through treatment for his NF related Cancer and they donated. By the second walk, they emailed me to explain why they were unable to participate in the walk's organization. He had had surgery at this point and was rehabbing in a nursing home. They could never get ahead of that tumor. He passed away just 3 weeks before the third annual walk. He was 24 years old and their only child.</span></span><br />
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<span style="line-height: 14px;"><span style="font-family: "verdana" , sans-serif;">Last night, when the young man passed and the mother of the young lady was pleading for prayers, Gavi's parents' faces were emblazoned on my heart. I couldn't even attend his funeral because I had just moved to Virginia. </span></span><span style="font-family: "verdana" , sans-serif; line-height: 14px;">They showed up unexpectedly at the NF Walk on September 29th of this year (3rd Annual) and a team was raised in his memory.</span><span style="font-family: "verdana" , sans-serif; line-height: 14px;"> </span><br />
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<span style="font-family: "verdana" , sans-serif; line-height: 14px;">It was more than I could bear, so I chose to let the burden that I felt so heavily last night, show in my Facebook post. I purposely abandoned hope for an evening so that I could feel the full force of my pain. I rarely ever do that, especially not in public.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5TnVnqJvqIVr2b1JuKq9Dm9evsPCoJfPUNIYrvbTj7xX4OMEPyvokpzMKRzSHIOq4jOHNZFdehNdyd4B_SXog5Yjnve-H_muwm6mpCl67vnmvs_gqVfP3ZBNV_rK-RO-EkptxhcHkKKLZ/s1600/26.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: "verdana" , sans-serif;"><img border="0" height="456" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5TnVnqJvqIVr2b1JuKq9Dm9evsPCoJfPUNIYrvbTj7xX4OMEPyvokpzMKRzSHIOq4jOHNZFdehNdyd4B_SXog5Yjnve-H_muwm6mpCl67vnmvs_gqVfP3ZBNV_rK-RO-EkptxhcHkKKLZ/s640/26.jpg" width="640" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "verdana" , sans-serif;">Team Gavi's Angels, that pulled together at the last minute, in memory of Gavi. His parents are in the center.</span></td></tr>
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<span style="line-height: 14px;"><span style="font-family: "verdana" , sans-serif;">Going back to the comments that were left on that post; they ran the gamut. As expected, those within the community commiserated, some of my friends outside of the community offered their prayers and well wishes, others encouraged me to stay the course and continue on in my efforts to do good for the cause. The one theme that stood out, however, above all else, was the validation of the intense need that we all have for each other's company in times of grief, in times of fear and in those times that we get to rejoice about one simple word: stable.</span></span><br />
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<span style="line-height: 14px;"><span style="font-family: "verdana" , sans-serif;"><span style="font-size: x-large;">S</span>ix months more of hope</span></span><br />
<span style="line-height: 14px;"><span style="font-family: "verdana" , sans-serif; font-size: x-large;"><br /></span></span>
<span style="line-height: 14px;"><span style="font-family: "verdana" , sans-serif;"><span style="font-size: x-large;">T</span>hankful for prayers answered</span></span><br />
<span style="line-height: 14px;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span>
<span style="line-height: 14px;"><span style="font-family: "verdana" , sans-serif;"><span style="font-size: x-large;">A</span>ble to breath once more</span></span><br />
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<span style="line-height: 14px;"><span style="font-family: "verdana" , sans-serif;"><span style="font-size: x-large;">B</span>earing good news</span></span><br />
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<span style="line-height: 14px;"><span style="font-family: "verdana" , sans-serif;"><span style="font-size: x-large;">L</span>ifted spirits</span></span><br />
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<span style="line-height: 14px;"><span style="font-family: "verdana" , sans-serif;"><span style="font-size: x-large;">E</span>njoying the moment</span></span><br />
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<span style="font-family: "verdana" , sans-serif;"><br /></span>Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com2tag:blogger.com,1999:blog-6375249913856744161.post-39494577107090490632013-11-19T09:08:00.000-08:002013-11-19T09:09:16.661-08:00A letter to Dr. Laura<span style="font-family: Verdana, sans-serif;">I like Dr. Laura's values. Although I don't agree with what she says 100% of the time, I mostly do, so I listen to her program on satellite radio as often as possible with my kids in the car. I always hope for a call that will open up a conversation between us and give me an opportunity to share a value.</span><br />
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<span style="font-family: Verdana, sans-serif;">Last week, I had this chance with Jesse. The call was about a child who was being bullied in school and whose parents taught him to fight back against bullies even when the school rules said not to. This has always been our philosophy as well and something that Dr. Laura encourages on her program. Jesse, has never been able to grasp this concept because, in doing so, one is breaking the rules and that is something he does not do. I have struggled to try to get him to understand. </span><br />
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<span style="font-family: Verdana, sans-serif;">In the call, Dr. Laura referred to a recent case in a college dorm where two students had to defend themselves against an assailant who they though was armed. They did so by pointing their own weapon at the man, which caused him to flee. As a result, the boys were likely to get expelled from their school for breaking campus rules about weapons.</span><br />
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<span style="font-family: Verdana, sans-serif;">Here is my letter to Dr. Laura:</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
Dear Dr. Laura,<br />
<br />
A few days ago, while we were driving home from yet another specialist appointment in a city a few hours from home, my 16 year old son and I were listening to your program on Sirius XM radio. There was a caller on the line who was describing an incident that took place at her son's school. Her son was a victim of bullying and she and her husband taught him to fight back despite the consequences he would face with his school. We only caught the last part of this conversation as we began the drive. My son, who has a neurologic disorder called neurofibromatosis, has a very straightforward way of looking at the world. He listens to rules and he follows them. Not only does he follow them, but he tries to make sure that everyone around him follows them too. He has difficulty with flexible thinking. I took the opportunity to have a conversation with him about the call. I explained that I felt, as you and the caller did, that a person should always defend himself against a bully even though he might get in trouble with the school. As I suspected he would, my son adamantly defended that the school had it's rules for a reason and that it is never ok to break rules that are there for your safety. No matter how I tired to get him to understand, he would not budge, so I left it alone for the time being.<br />
<br />
Yesterday afternoon, I was catching up with some of the calls of the day, which I had missed from the program. Lo and behold, the call referenced above was posted and I was able to hear it in its entirety. When you sited the example about the college students in their dorm, I knew I might be able to reach my son after all. I called him to come into the room and listen to the call. He was reluctant, but complied and when it ended, we talked again. As I mentioned earlier, flexible thinking is not easy for this child. I knew it was a long shot, but so desperately wanted him to understand this for his own safety in life, so I asked him if he felt the college kids should have been expelled. He immediately said, "No, they were defending themselves and it was a life or death situation." I said, "But they broke the rules, shouldn't they be punished?" He repeated his previous thought and that is when I asked him how that was different from defending yourself from a bully in school. He could not come up with an answer! He finally saw the point and understood that his father and I would always support him against anyone, in any situation, who told him he could not defend himself . He got it!!! I couldn't be happier. Thank you Dr. Laura, for finding a way to explain this that I couldn't find. My son also has some difficulty understanding social cues and body language. He does not always know when someone is being mean to him. I have often worried that he would get picked on and have feared that he would not fight back. Now I can be sure that he gets it and he will do the right thing.<br />
<br />
Fondly,<br />
Connie Sorman, Richmond, VAConnie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com0tag:blogger.com,1999:blog-6375249913856744161.post-22196718335523265772013-11-18T08:41:00.001-08:002013-11-19T09:10:01.818-08:00New York City Adventures, final chapter<span style="font-family: Verdana, sans-serif; font-size: x-large;">D</span><span style="font-family: Verdana, sans-serif;">ay three, our final day in the metropolis that we love, brought us to the Seaport area and Battery Park. First, if you don't know the area well, please take this advice. If your destination is Battery Park, walk through the financial district, not along the Seaport, especially in the fall and winter months. Don't misunderstand, it is a much more scenic walk, but the wind…quite intense and unrelenting, and the walk is much longer than you would imagine.</span><br />
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<span style="font-family: Verdana, sans-serif;">Our destination, The Statue of Liberty and Ellis Island Ferry, was quite a process. First, we had to walk all the way there, next we stood in line to buy tickets (yes, I know they are available online, but didn't go that route since we were unsure of how much time we would have). After that, we joined the masses moving toward the building that would take us through airport style security screening. We re-bundled ourselves and joined the lines moving toward the ferry boarding; just missing the prior boat. We then waited for the next ferry to dock, tie up, unload and prepare for loading. As we waited, a man with a large backpack hurdled the barriers separating those in line from the walkway in the park. He was just a few feet away from us. Immediately, a police siren blared as the officer ran forward and several people shouted at the man. He jumped back over the barriers and began to run in the opposite direction of the officer. It was scary for a few moments, while we didn't know what this stranger's intentions were. He appeared, in the end, to be an ignorant tourist and did comply with the officer's questioning. Whew! With all of the completely necessary security measures in New York as of late, it puts people on edge and to have that happen, just as we had passed through the screening, it made me much more alert. By the time we were on the ferry and heading toward the Statue of Liberty Island, we only had about an hour left before we would have to head back to the hotel to catch our ride to the airport. The time constraints required us to make a decision about which attraction we would disembark for. We discussed the options and settled on Ellis Island since we felt we would have more to discover there. So we took some photos and stayed aboard the ferry as they unloaded and reloaded the passengers.</span><br />
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<span style="font-family: Verdana, sans-serif;">Ellis Island was not exactly what were expecting it to be. Alexa was disappointed that there wasn't more on display relating to the process that immigrants went through on arrival to America. There was some audio and we were able to visit the Great Hall, where a lot of the process happened, but it was mostly empty and difficult to imagine what it was truly like for the people who ended up there after traveling for weeks on ships under horrid conditions. Several parts of the museum were closed and the majority of what we saw was related more to the history of our country. Overall, we were happy that we visited since we were all curious and the kids had learned about it in school. We did use the computer system to find some of the Rudnicki relatives, Walter Rudnicki, Peter's maternal grandfather, in particular. We located his name on the memorial, but didn't have time to visit the actual memorial because we had to get the next ferry back to Battery Park.</span><br />
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<span style="font-family: Verdana, sans-serif;">As we disembarked, the clouds rolled in and the view on the horizon became ominous. We hustled back to the hotel, through town this time, and arrived in time to meet our car service back to the airport. </span><br />
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<span style="font-family: Verdana, sans-serif;">What a great trip. We not only had an adventure, we made memories that Jesse and Alexa, as teens, will actually retain and be able to recall throughout their lives. Financially, we should not have gone, the house in Pittsford is still unsold; our burdens are heavy and money is tight. Sometimes, things happen even though our practical minds tell us they should not, and why should we have regrets when the benefits are so clearly written on our children's faces.</span><br />
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<span style="font-family: Verdana, sans-serif;"><br /></span>Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com0tag:blogger.com,1999:blog-6375249913856744161.post-81118579189662461012013-11-18T07:46:00.000-08:002013-11-19T09:10:20.279-08:00New York City Adventures, part II<span style="font-family: Verdana, sans-serif;"><span style="font-size: x-large;">P</span>eter had a few hours before his flight to Rochester on Saturday afternoon (11/9/2013), so we took the time to visit the 911 Memorial, just a few blocks from the hotel. Our prior visit was long before, when there were still just massive holes in the ground surrounded by chain linked fencing where the Twin Towers once stood. The memorial is a stunning, yet somber use of the two former buildings' foot prints; two massive pools with 30 foot waterfalls descending into a center void. Victims' names are inscribed on the panels around the outside of the pools. We were able to find the name of our former neighbor, Tom Duffy, who died on that fateful morning in 2001 as he waited for an 8:30 AM business meeting to begin. Tom showed up early for his meeting that morning and missed the phone call at his hotel informing him that the meeting would be delayed. Tom sadly left behind his beautiful wife, Cindy and their two sons.</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">I couldn't resist the chance to catch the US Navy Seamen as they observed the memorial gardens with the Survivor Tree standing just behind them. To see the story of this incredible addition to the memorial, please visit: <a href="http://www.911memorial.org/blog/tags/survivor-tree" target="_blank">Survivor Tree Story</a></span></td></tr>
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<span style="font-family: Verdana, sans-serif;">As Peter headed toward JFK, Jesse, Alexa and I braved the NYC Subway system in search of one of our all-time favorite Manhattan eating establishments: The Carnegie Deli! The food was as consistently delicious as ever, of course.</span></div>
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<span style="font-family: Verdana, sans-serif;">Our next stop was a must-visit-while-in-New York: FAO Schwartz & Co. Although it was just a few blocks away, thanks to NF, Jesse has a difficult time walking for any length of time. We were able to explore the store and the underground Apple Store before he began to poop out. :(</span></div>
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<span style="font-family: Verdana, sans-serif;">At this point, we were deciding what to do next. It was only 6 PM, so too early to head back to the hotel, but getting dark, so options were limited. We considered the observation tower on the Empire State Building, however, with the sun setting, thought better of it. We also thought about a museum, but Jesse's fatigue was setting in and became very apparent as we made our way toward Bloomingdales. As he rested in the shoe department…what? There was plenty of seating there. It had absolutely nothing to do with Alexa and I wanting to check things out; that was just a bonus. ;)</span></div>
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<span style="font-family: Verdana, sans-serif;">We finally decided on a movie; the Book Thief. Since I had read the book, several years ago, I knew the kids would enjoy the story. It was an accurate representation of the events presented in the book and we found it quite well done. By the time we headed toward the subway station, we were spent, but I was proud of myself that I was able to manage to get us safely back to the hotel, all the way downtown.</span></div>
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Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com0tag:blogger.com,1999:blog-6375249913856744161.post-41629267302046011192013-11-18T06:38:00.003-08:002013-11-19T09:10:41.532-08:00New York City Adventures, Part I<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Verdana, sans-serif;"><span style="font-size: x-large;">T</span>he energy of New York City somehow gets right into my core and pulsates through me. I find myself feeling more alive and acutely alert to every detail of my surroundings. </span><br />
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<span style="font-family: Verdana, sans-serif;">Our hotel room on Pearl Street had a window with a view of the majestic sight of the new Freedom Tower, which most people still just call, the World Trade Center. It was our first time seeing this towering tribute to the former structures so tragically lost on 9/11/2001. It is easily my new favorite building in all of Manhattan. As you can see from the photo I took as our ferry left the Battery Park harbor, it sparkles and shines and stands proudly on the horizon of the financial district. It is almost unreal how beautiful it is. </span><br />
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<span style="font-family: Verdana, sans-serif;">We had an early start the morning after gala, with plans to spend our day with several other NF families who were also in town for the event. The day began with a visit to Rockefeller Plaza and the Today Show with our dear friend, April Anderson (mother of Dakota, 8, NF1) from California. We watched as the famous Radio City Music Hall Rockettes performed a number from the Christmas Spectacular, but we didn't get to see any of the anchors live on the plaza. </span><br />
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<span style="font-family: Verdana, sans-serif;">The 76 foot Norway Spruce, from Shelton, CT arrived at the Plaza just moments before we did. How exciting is it that we had a once in a lifetime opportunity to watch as the crew prepared and hoisted the tree to its upright position? We secured the prime spot along the barricades positioned just behind the tree's massive trunk; precisely where all of the action was! We watched for about 3 hours as the tree went through the lengthy process to be set in it's final resting place just above the skating rink. It truly was an unforgettable experience and we even </span><span style="font-family: Verdana, sans-serif;">walked away with a small branch as a memento.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgD4km0bcS1CSD_iVTkJK1P8CcWFfmQLgZMViisc_cwt0G6uVI8xcw3zsxgOPCN2CvL8t4MvmZZn5Pxc4ZcbXxGUw8cpOa_re5ID7p_y54X1zPTvMVgO68b1TgunQwnDlbRIHbVdH9KBR30/s1600/Rock+tree+media.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgD4km0bcS1CSD_iVTkJK1P8CcWFfmQLgZMViisc_cwt0G6uVI8xcw3zsxgOPCN2CvL8t4MvmZZn5Pxc4ZcbXxGUw8cpOa_re5ID7p_y54X1zPTvMVgO68b1TgunQwnDlbRIHbVdH9KBR30/s320/Rock+tree+media.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">You can see Jesse, Alexa and I watching behind the barricade in this press photo!</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUoySKfxMULCio8A6nJ9De-6n2SDoo136emG_G_ucE7gNltOU8SvgEZOyXMJIN1PfJUmjg4bCRQ5kCghh9MY_TM4flkejD6gVqz8ahL5f5aLyNOCBwvm2_VlrX3hUOrA3CXoJArowj_DSa/s1600/IMG_0940.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="195" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUoySKfxMULCio8A6nJ9De-6n2SDoo136emG_G_ucE7gNltOU8SvgEZOyXMJIN1PfJUmjg4bCRQ5kCghh9MY_TM4flkejD6gVqz8ahL5f5aLyNOCBwvm2_VlrX3hUOrA3CXoJArowj_DSa/s320/IMG_0940.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">April appears in this photo found on the Huffington Post online article.</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieJzF5D5YwRuMmOAWLjwBPKQ3O7aWnta0ZTtrZIheVa-vVMpbgiTp2Ed1k8pBnBpDPYZ5HGhLQjjfSqCufmOK80jX6TOspF8FNkTBV1aAyEgcdZ2s3wwc61THx3zFtwB6yL8Jq_A4M9-7e/s1600/Rock+Plaza+tree.jpg" imageanchor="1" style="font-family: Verdana, sans-serif; margin-left: auto; margin-right: auto; text-align: center;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieJzF5D5YwRuMmOAWLjwBPKQ3O7aWnta0ZTtrZIheVa-vVMpbgiTp2Ed1k8pBnBpDPYZ5HGhLQjjfSqCufmOK80jX6TOspF8FNkTBV1aAyEgcdZ2s3wwc61THx3zFtwB6yL8Jq_A4M9-7e/s320/Rock+Plaza+tree.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">April, Alexa and Peter posing in our prime spectating spot.</span></td></tr>
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<span style="font-family: Verdana, sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYpXvLgaVw28slO2QsuGBA2PPwtJwIt7sXTVhbhY2xE_5b_UWhbmD1pfLD-8Kjc7W6tpsaIN0PUvb8ezKvOwDvbhDnuHfzyCMLwu4By2Zg9PrZjzRdaxxfj8bkdTz4bZPKAag9o-E-C4p5/s1600/IMG_3440.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYpXvLgaVw28slO2QsuGBA2PPwtJwIt7sXTVhbhY2xE_5b_UWhbmD1pfLD-8Kjc7W6tpsaIN0PUvb8ezKvOwDvbhDnuHfzyCMLwu4By2Zg9PrZjzRdaxxfj8bkdTz4bZPKAag9o-E-C4p5/s200/IMG_3440.jpg" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxmBS6OdqpIqWJKZ5P5v5r9kjphBoJpxllilAs0HHCjMyJ0lb7jy19riUB8jB_FiDB5kA37FH0nKrv-og0-mQnacuBZLYlw6JTBC5xVK3ic6UNoMPKCp2lrDZhYhoJnCFeNuc1vm4UH1pa/s1600/IMG_3441.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxmBS6OdqpIqWJKZ5P5v5r9kjphBoJpxllilAs0HHCjMyJ0lb7jy19riUB8jB_FiDB5kA37FH0nKrv-og0-mQnacuBZLYlw6JTBC5xVK3ic6UNoMPKCp2lrDZhYhoJnCFeNuc1vm4UH1pa/s200/IMG_3441.jpg" width="150" /></a></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmVVXpjEh3wcrLA-I8e5DV7Y9n42Fv0agSmOKQ9X4ljOuxCz-qAFdpCFhHowrp9VByEhq4R_J8cS7qxZgPsp-uobr0rVt_ZdOiLQq3HBqWGZOnfsBYP3EtwbWv-AuJQr7Rk14NGlynnG48/s1600/IMG_3439.MOV" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmVVXpjEh3wcrLA-I8e5DV7Y9n42Fv0agSmOKQ9X4ljOuxCz-qAFdpCFhHowrp9VByEhq4R_J8cS7qxZgPsp-uobr0rVt_ZdOiLQq3HBqWGZOnfsBYP3EtwbWv-AuJQr7Rk14NGlynnG48/s1600/IMG_3439.MOV" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The tree being lifted by a massive crane.</td></tr>
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<span style="font-family: Verdana, sans-serif;"> From the plaza, we continued on our adventures to meet up with the Perfetti and Markland families at the Central Park Zoo. Although it was a chilly day, we all had a great time and enjoyed the time we so infrequently get to spend together as families. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizHJYRPbXt4lNv2c-_gsY0qZ6IomDjpHDllnlED7afCC3YK1To7iSBW4FbnexCd3K53Oh3oL85Ye7H213DhTG4fKKYQGZIavgSe_xPXGgDwM8qIx70xxTtAnofQDsRdmssHuQqrSde9zXS/s1600/IMG_0943.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizHJYRPbXt4lNv2c-_gsY0qZ6IomDjpHDllnlED7afCC3YK1To7iSBW4FbnexCd3K53Oh3oL85Ye7H213DhTG4fKKYQGZIavgSe_xPXGgDwM8qIx70xxTtAnofQDsRdmssHuQqrSde9zXS/s640/IMG_0943.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">From left to right: Jesse-NF1, Rodney, Blake, & Jill Markland, Jesse, Alexa, Peter, Me, April Anderson, Jacque, Julia-NF1, Laura, Anthony, Alex, & AJ Perfetti</td></tr>
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<span style="font-family: Verdana, sans-serif;"> Our next stop was the Starlight Diner on Broadway to meet up with Bailey and Anita Gribben. All of the budding stars/wait staff kept us entertained as we ate burgers and drank milk shakes. Laura even performed a darn good rendition of a Stevie Nicks favorite and Bailey was publicly acknowledged for his new Ambassadorship! We continued on foot to the unparalleled Times Square Toys R Us to take a ride on the indoor ferris wheel and explore 4 floors of toys! It was then time for the exhausted families to hug, vow to meet up in Daytona for the Racing4Research event and sorrowfully part ways.</span><br />
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<span style="font-family: Verdana, sans-serif;"></span>Connie Sormanhttp://www.blogger.com/profile/13281012396708020221noreply@blogger.com0