Short of Breath

com·mu·ni·ty

kəˈmyo͞onitē/

noun

1. 1.

   a group of people living in the same place or having a particular characteristic in common.

   "Rhode Island's Japanese community"

   synonyms:

   group, body, set, circle, clique, faction; More
2. 2.

   a feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals.

   "the sense of community that organized religion can provide"

   
   

This 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: 

"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."

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.  

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:

"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. 
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."

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???

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."  That's good advice. So why was I losing it?  My breath was caught in my chest and my heart was heavy.  

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. 

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.

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. 

Jeff, Lyn and Gavi at the 1st Annual NF Walk Rochester, NY

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…

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.

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. They showed up unexpectedly at the NF Walk on September 29th of this year (3rd Annual) and a team was raised in his memory. 

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.

Team Gavi's Angels, that pulled together at the last minute, in memory of Gavi. His parents are in the center.

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.


Six months more of hope

Thankful for prayers answered

Able to breath once more

Bearing good news

Lifted spirits

Enjoying the moment

A letter to Dr. Laura

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.

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.  

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.

Here is my letter to Dr. Laura:

Dear Dr. Laura,

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.

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.

Fondly,
Connie Sorman, Richmond, VA

New York City Adventures, final chapter

Day 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.

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.

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.

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.  

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.

New York City Adventures, part II

Peter 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.

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: Survivor Tree Story

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.

Corned beef on Rye                 

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. :(

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. ;)

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.

New York City Adventures, Part I

The 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. 

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.  

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. 

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 walked away with a small branch as a memento.

You can see Jesse, Alexa and I watching behind the barricade in this press photo!

April appears in this photo found on the Huffington Post online article.

April, Alexa and Peter posing in our prime spectating spot.

The tree being lifted by a massive crane.

 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. 

From left to right: Jesse-NF1, Rodney, Blake, & Jill Markland, Jesse, Alexa, Peter, Me, April Anderson, Jacque, Julia-NF1, Laura, Anthony, Alex, & AJ Perfetti

 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.

Children's Tumor Foundation Annual Benefit Gala

The crazy NF world is not always all bad. We have come to look forward to the events that bring us together with others who live in the same chaos that we do. The Annual NYC Benefit Gala is an event that our family has always wanted to attend, however, timing and circumstances have not been on our side in the past. This year, we were very fortunate to be invited to sit at the table of board member, Tracy Galloway and her husband, Mark. Their daughter, McKinnon, has NF2 and this was our first time meeting this beautiful, vibrant girl.

Jesse and Alexa were originally not going to attend either. We had planned, not ideally, to have them situated with movies and pizza at the hotel a few blocks away.  A couple of days before the event, as a group of us were chatting through Facebook message in excited anticipation of the evening, Linda Martin (mother of Kevin, 15-NF1 and VP of the Board of Directors) changed the plan!  She assured us that Jesse and Alexa would be accommodated and could join us for the event. She was kind enough to arrange the details and they sat at her table next to Kevin. They were beside themselves! This was a first charity gala for them, but even more than that, it meant that they would watch their friend, Bailey, as he was installed as the CTF Ambassador!

As we arrived, we had the whole red carpet experience, complete with photographs!

The Galloway Family (Guest, McKinnon-NF2, Mark and Tracy-board member), our lovely host family.

The beautiful NF Moms I am so blessed to have in my life: (L to R) Jill Markland, Elizabeth Burke, Linda Martin (VP of the BOD), Laura Perfetti, me, Anita Gribben, Stacy Costigan, April Anderson

Bailey Gribben kept us all on the edges of our seats over the last eight weeks as he fought off a persistent and aggressive infection requiring multiple surgeries and lengthy hospital stays. Last night, I had the privilege and pleasure of watching him as he assumed his new role as Children's Tumor Foundation Ambassador. His poise, charm and sense of humor while delivering the speech that he wrote reminded me of what a incredible, strong young man he has become. There are great things in store for Bailey And I am honored to be among his friends. Home run, Bailey!

The Gribben family, Tommy, Anita, Shannon and Bailey, have become an extension of our own family.  They are extraordinary people who have been through more than their fair share of trails and tribulations, especially over the last year.  We were very fortunate to have the incredible opportunity of spending this night celebrating them;  their strength and perseverance.

The Gala was a tremendous success, raising over one million dollars for NF research! We had a lovely, emotional evening.  To see all of the photos from the night, please visit this link.

A Tribute to My NF Hero

My 14 year old son was in surgery in a third attempt to correct a 3.3 cm leg length discrepancy when I felt inspired to write this tribute. Neurofibromatosis is the cause of his asymmetry and what makes him a very brave young man who continues to make me a better person every day just by being him.

When you were little you asked me what the spots on your skin were. You wanted to know why I didn't have them too. I told you that they were angel kisses and that only the most special people have the kind that stay.

You didn't walk or talk when other kids your age did, but I always said that you just didn't have anywhere to go or anything to say.

Learning wasn't as easy for you, but that didn't matter because you always worked twice as hard anyway. Success is always sweeter when it is earned through sweat and tears and this fact never deterred you.

The doctor visits began early in your life and there have been many. You've been poked, scoped, imaged, scanned, tested, evaluated, re-evaluated, cut, stitched, observed, medicated, dilated, screened, diagnosed, analyzed, aspirated, examined, and treated, but you never once fussed or complained about it, even though you had every right to.

You learned words ending in "ology," "trist," and "ometry" even before you could recite your ABC's and you knew how to advocate for yourself before you could tie your shoes. You could even teach some of the "professionals" a few things about NF!

You've had numerous long car rides and even some plane trips to get to the professionals who have expertise with this disorder. You treat each one like a new adventure. You even agreed to be in a study which exposed you to further evaluation, poking and treatment because you knew that even though you wouldn't benefit immediately, it would help others like you eventually. Your wisdom never ceases to astound me.

Your confidence in yourself and in God’s plan has taught me many lessons about life. I watch you playing ball with kids who weren't born with the same challenges you were and you have a smile that stretches from ear to ear. I sometimes worried that other kids would tease you because you didn't have their skills or coordination, but in the end, your attitude and persistence made you their hero too.

The teachers, aides and therapists who have been in your life, almost as long as you have been in mine, all bond with you and form a connection to you that lasts long after their services end. In our conferences they will say, "Jesse is such a pleasure..., Jesse is a joy to have...". They don't have to tell me what I already know, but I'm so glad they do.

When people pity you for your situation, you say that there are others with much worse situations and I have to swallow the hard lump that has formed in my throat. When I share stories with you about the kids with NF who are undergoing cancer treatments and amputations, you never worry that will happen to you too; you just ask how we can help them.

Your way of thinking inspires me to do whatever I can to help solve the NF puzzle. Not long after your diagnosis, I put a blue silicone bracelet on my wrist and I've since never taken it off. It doesn't matter that it doesn't match my formal gown, so long as one person asks me what it means. Every time that happens, I've made one more person aware of Neurofibromatosis and I've opened one more mind to the idea of a cure.

Fundraising has become my purpose. Every dollar I earn for NF research gives me an ounce more of hope that a cure will be found in your lifetime. At our first Walk for NF I made ribbons for everyone on your team to wear. When I asked you to wear one you smiled and said, "I wear my ribbon every day." And you do, but not for pity or recognition. You wear your NF because you don't have a choice, but you don't ever let it wear you.

And that is why you are my hero.