I think about Jake all the time. Some of the time I’m not worrying about his future, but a lot of the time I am.
The Bible says that perfect love casteth out fear. Unfortunately, I’m not perfect at anything. But sometimes my love for Jake must come close to being prefect, because every now and again I feel like there is nothing to worry about with him. It’s all going to work out. I feel like the NF is not going to complicate his life significantly. I feel like the NF is not going to matter that much. I love it when I can get to that place and I can believe for just a minute that NF doesn’t matter.
But that minute passes. NF matters. Does it matter that my son is probably going to have tumors all over his body and his face? No. Well, yes. It shouldn’t but it does. Does it matter that his speech is mushy and that he’ll probably be a slow learner? Again, it shouldn’t but it does. If, instead of being cancerous, the tumors are just bumps on his skin, the only thing that will make them matter is how Jake responds to the way other people react to the bumps. I’m hopeful that in time Jake’s speech delay, the learning difficulties and the attention deficits will not mean that he didn’t make it to the milestones- only that he made it to the milestones later than most other kids. But it’s a real possibility that the frustration of always being behind, the hurt caused by kids making fun of him for being slow, or for looking different- combined with the emotional immaturity, will really do a number on his self-esteem. (And how shitty a combination is that; learning disabilities, physical irregularities AND an emotional immaturity that makes it hard to deal with the sticks and stones).
I worry about the developmental, medical and educational challenges that Jake is going to face- but sometimes the thing I worry about the most is the social stuff. Now, Jake doesn’t have a problem fitting in, or getting along with kids. But I worry about how kids are going to react when the bumps come- or if he can’t keep up athletically. My childhood was a dream and my teen and adult years were a riot- because I had awesome friends. I worry about how it affects a person to feel like they don’t have a place among their peers. Some people can handle it- they wait out those years while the rest of the world matures. It hadn’t occurred to me just that way until now- but I think it’s not that people who are different become more normal as they age, it’s – that the normal people become more civil (most of them, anyways- some folks are going to be jackasses forever). Some people with disabilities whether the storm pretty well while they wait for the people around them to mature but that storm really thrashes other people’s souls.
I don’t want my son’s soul to get thrashed. He’s so good and so happy. I don’t want him to become defeated or angry.
Last summer we got the news that Jake’s deletion was major. The entire NF-1 gene and several neighboring genes are gone. Along with news about the genetics, our geneticist gave us papers from two recent studies about folks with NF who have a deletion almost as big as Jake’s. I read those papers on the train on my way in to work today. It broke my heart. Again. I thought about it all day. Again. I had to take a couple walks during the work-day and just cry. The odds of Jake having more than a thousand tumors, the odds of learning difficulties, intellectual impairment, eye problems, attention deficits, wicked scoliosis and on and on. It was overwhelming.
Those of you who know me, know that I am NOT an optimist. Which is weird because there aren’t many things that have gone seriously wrong in my life. I’ve been very lucky. Here’s an analogy for you. I like backpacking. And I’m in the habit of always carrying some extra stuff in case something bad happens. The times that something bad has happened, I’ve been really glad I had that stuff. And the times that something bad didn’t happen, the extra weight of that stuff didn’t slow me down to the point that I couldn’t get to where I wanted to be, so there was nothing lost.
So you’ll have to forgive me for obsessing over things that may never happen.
NF matters. I believe that after this life, Jake will be freed from an imperfect body and everything that went sideways as a result of the fall (including all our physical imperfections) will be straightened out. So NF doesn’t matter. But the major side-effect of NF- the impact on Jake’s spirit- that can be real and last a long, long time. By which I mean forever. So NF matters.
The challenge facing every parent, but specifically every parent of a child with special need is this. Parents have to help their kids make it not matter. Andrea and I have to help Jake make NF not matter. Other kids and their parents out there have to make ADD, a deformed limb, seizures, Cornelia de Lange, Bilateral Perisylvian Polymicrogyria, or Autism not matter. We have to help these kids accomplish everything they can, to be as happy and fulfilled and productive as they possibly can be- despite (and I mean spite of) their condition. Erik Weihenmayer, the blind man who climbed Mt Everest made blindness not matter. Bethoven made hearing loss not matter. Stephen Hawking has made ALS not matter. The parapalegic man who rides the bus into town to got to work to support his family- He makes his disability not matter.
So that’s the job. Unfortunately Jake can’t just wake up tomorrow, get in NF’s face, and tell it to go to hell and have it be over. He will have to do that to one extent or another every day of his life. And Andrea and I need to help him do it. But he will. We will. We have to.