You have heard about the clinical aspects of NF and you have also seen and heard about the “Faces of NF” and all of that information is something that I hope that you remember long after you leave this dinner tonight.
Now I would like to take a few moments to tell you about the specific reason that I am here.
This is my eight year old son Max and he is the reason I am here tonight. There are a number of you out there that know Max and I feel pretty safe in saying that to know Max is to love Max. For those of you that don’t know Max I want to tell you a little bit about him and our family and the road that brought us to where we are tonight.
Max is an amazing kid. He is a lot like any other eight year old boy. He likes Nintendo, hot dogs and Spongebob. He is a whiz at math. He, for reasons only his Auntie Beth can explain, likes ants. He excels at the computer and is the best big brother anyone could possibly want. And, much to his grandfather’s delight (and my chagrin) he seems to like NASCAR. You will not find a more resilient kid or a more playful spirit. There are times that I can ALMOST forget that he has Neurofibromatosis.
When Max was 2 years old a family friend, who happened to have a son just a little older than Max, mentioned offhand that he was surprised that Max wasn’t talking yet. My wife and I, being the beaming first time parents that we were, hadn’t really noticed that Max was behind in this area. But once it was pointed out to us we couldn’t help but realize that he was right, Max was a little behind. Should we be concerned? After all every kid develops at a different pace don’t they? And besides…he’s a boy. And everyone knows that boys develop slower than girls.
So we called our pediatrician and asked him if we had anything to be concerned about. He told us to get in touch with early intervention and have Max tested. Oh and by the way maybe we should call a neurologist as well….just to be safe.
We went to see E.I. and they confirmed our fears. Max was significantly delayed in gross motor skills, fine motor skills and speech. This was a very hard blow to us but it was nothing compared to what the neurologist would tell us.
The first thing that the neurologist noticed was the large number of café-au-lait spots on Max. And that’s when we first heard the term Neuro-fibromatosis.
Neuro-fabro-ma-whatsis????? To me it sounded like a made up term. But unfortunately it is an all too real disorder. He explained to us some of the awful things that Max could develop as a result of this disorder. Bone deformities, learning disabilities, tumors that could cover his entire body. Tumors on his optic nerve, on his spinal cord or in his brain. It was way too much to handle. But after a short period of depression and denial we decided that it was time to learn about this disorder and face it head on as best we could.
Now, we all know that raising kids is hard. And when children are born the doctor doesn’t hand you an instruction manual that tells you all the right things to do in every situation. They don’t tell you what to say to your child so that he will grow up happy, confident and well adjusted. But when you have a child that has any kind of disabilities it is even more difficult to do and say the right things. There are so many decisions that have to be made and we had no one around us that had any similar experience. That is why the NF Inc in general and the Northeast chapter in particular is such an important part of our lives. It not only helps to fund research so that one day we will have a cure for NF. But it also gave us contact with people that are going through the same thing that we are. People that have walked this path before us and can give us the wisdom of their experience.
We are also lucky that we have friends and family that support us every day so we were not alone in our fight to understand and deal with this hand that we had been dealt. For the most part our life goes on as any normal family does. We do all the normal family things and we try not to dwell on Max’s problems. But each time a doctor’s appointment comes up or when an MRI is scheduled we hold our breath and pray that they won’t find anything.
In November of 2002 Max was scheduled for a routine MRI simply because he hadn’t had one for a couple of years. So the breath holding began. Unfortunately this time we could not breathe that sigh of relief that we wanted because this time the news wasn’t good. Max had developed a brain tumor that was causing a backup of fluid in his brain and we needed to get him to the hospital as soon as possible…………….. The next day our 6 year old boy had brain surgery. No parent should have to sit outside an operating room while their child has ANY kind of surgery much less surgery on their brain. But there we were pacing, crying, hoping for the best but fearing the worst.
An hour after Max came out of surgery his only requests were to play Nintendo and maybe get a little McDonalds for dinner. This is the kind of kid that we have. One that we are surprised and amazed by every day. Nothing seems to bother this kid for long. Sure he might not like getting an IV put in but once it’s in he doesn’t seem to mind or even notice.
As parents, Kristen and I have good days and bad days. On the bad days we are often told “Well, Look on the bright side. Things could be worse.” Now I am a reasonably intelligent guy and I understand that things with Max could be worse…a lot worse, but some days that knowledge doesn’t help. Try to imagine your child looking up at you with tears in his eyes and saying “Why can’t I run as fast as the other kids” and knowing that he wants an answer from you that you just don’t have and then tell me at that moment that things could be worse. Or imagine seeing your child unconscious on a hospital bed with a bandage on his head and tell me things could be worse.
On the other hand when you see, as Kristen and I did one day, your child who has always had balance problems, walk along the wall of a sandbox like a balance beam with no problem and no knowledge that he is doing anything special, at that moment things couldn’t be better. Or imagine watching your son get his first hit in baseball and see the joy on his face as he jumps up and down on 1st base with his arms raised like Rocky at the top of the stairs and life couldn’t get any sweeter.
You see that’s why NF is, for me, both a curse and a blessing. On the one hand we will for the rest of our lives sweat out every doctor’s appointment and every test wondering will this be the one where they find something. And at the same time you appreciate everything your child does, every milestone, every success so much more than if they had no problems at all.
The other blessing about having a child with NF is people like you. People that take time out of there hectic lives and money out of their wallets to help. Every day on the news all you ever here about is tragedy, death and the dark side of the human animal. What we get to see is the generosity, compassion and beauty of the human soul. When we have our worst days we can always count on a kind word or a small gesture that reminds us that we are not alone in our pain.
Today, life for us is pretty good. Max just recently had another MRI and it showed that the tumor in his head is stable. His speech continues to improve, He is having a great time on his baseball team, He does pretty well in school and has a lot of friends. You could say that we are having a good run of luck (knock on wood). But in the back of my mind I ask …how long will this run last? It is the burden that Kristen and I and all the people that know and love Max have to bear. How long will this run last? If people like you continue to donate to the NF Inc. Northeast, in whatever way that you can, and help them in their search for a cure, it could last for the rest of Max’s life.
Thank you
