Life Expectancy

Yesterday I was thinking about a special needs kid who Sarah rode the Camp JCC bus with, and the thought flashed through my mind that this girl would have to ride alone now. Then I remembered that she had died a few months before Sarah. Like Sarah she died in her sleep. This led me to review in my mind all the special needs kids I knew who have died, and then I had to kind of ghoulishly and compulsively Google all the other special needs kids I know for evidence that they are still alive. A couple of kids are not only still alive, they are in college now. Good for them.

There’s no way to tell which kids will die young, of course. Life expectancy is a big issue when you have a child with disabilities. I remember once when Sarah was about 5 or 6 we were at the pool and I was chatting with another mom who I had just met, and she asked me out of the blue “Do you mind if I ask you what her [Sarah’s] life expectancy is?” I was really flustered, and I said “I really don’t know.” I was very self-conscious after that, because I thought we’d just been having a pleasant conversation about kindergarten placements and so forth while Sarah played in her inflatable turtle, but I guess the whole time she was thinking “Jesus, how long is this kid going to live?”

My random and nosy Googling for some reason led me to look up a former colleague of mind who I’m Facebook friends with but haven’t heard from in a while and I discovered he died about a month after Sarah, of pancreatic cancer. I was sad. We weren’t close friends but I always liked him. He did a lot of creative writing. I remember once reading a blog post by him about his childhood where he said when he was about seven years old he suddenly had the realization that he was in a school for kids with special needs. (I think he had Asperger’s). I found it very touching. I think I’ll go back and see if I can find it.