Me Too

I have a confession and some apologies to make.  I confess to feeling more sympathetic to my disabled son's needs, than to my other children's. I know that the reason I have felt this way is 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?  

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."

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!

What kind of unrealistic expectations have you placed on your unaffected children?

Here is my list of transgressions:

1. "You should be more patient with him because it's not his fault."

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? 

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.   

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.

   2. "You need to figure it out on your own."

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. 

Although I do feel some guilt 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.

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. 

  3.  "I expect more from you."

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.

 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.

Of course, I have the same kinds 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.

Now for my apologies:

To my Biggest Kids, 

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.

 To the Baby,

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."

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. 

Alli-Sunshine

 Two years ago, I noticed a teen-ager looking to make NF connections on Facebook. This conversation ensued:

• Conversation started November 7, 2011
• 

  11/7, 8:59pm
  

  Allison Sovie
  

  
  

  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 ..
• 

  11/7, 9:23pm
  

  Connie Brisson Sorman
  

  
  

  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.
• 

  11/7, 9:29pm
  

  Allison Sovie
  

  
  

  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
• 

  11/7, 9:35pm
  

  Connie Brisson Sorman
  

  
  

  Well perhaps you can join in one of our chapter activities and get to know some others with NF.
• 

  11/7, 9:47pm
  

  Allison Sovie
  

  
  

  I would love to join in on that stuff !

  
  

  
  

 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.

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.

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.  We had a brief, online conversation, and then I didn’t hear from her again for almost a year.

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.

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.

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.

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. 

Allison and I at the NF Forum Nashville, TN Walk 2013

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 

NF R.A.C.E.R.S., 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.

Allison’s surgery and recovery took place over this past summer. She is doing well and will continue to be monitored with regular MRIs.

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.

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.