I've developed a bad habit of wondering if everyone I see that is in a wheelchair has spina bifida. I guess that's not a bad habit -- the bad habit would be if I actually went up and asked everyone. In my orientation seminar at Kean University (I'm teaching one class there this semester), there was a girl named Millie, who was in a wheelchair. My first thought was "Does she have spina bifida?" But to my credit, I kept our conversation limited to niceties. However, when we went around the room to introduce ourselves she mentioned that she had just finished her graduate thesis on "identity and living with spinda bifida" which is what she has. Ooh-di-lolly -- I didn't even have to ask. It was all I could do not to interrupt and say "My son has spina bifida, too." I waited until break and went up and introduced myself. I asked if she would mind sharing her thesis with me, and explained about Oliver. She was very nice and said she would e-mail it soon. She also gave me some good information, including the fact that she is on the board of directors for the tri-state area spina bifida associaton. I've been on their website, and have always intended to go back and check it out when Oliver is a bit older. There are lots of events and news and other stuff that has to do with the social aspect of living with spina bifida. We've been so caught up with his immediate medical care that social issues got put on the back burner. It's nice to know at least one other person who is involved with these issues -- it might make getting involved that much easier.
Although it may not seem like a big deal, it was really exciting for me to meet someone living successfully with spina bifida. When I think about Oliver's future, I don't see it with limitations. Even if he is in a wheelchair, I fully expect him to be independent, smart, and even athletic. I know -- those are high expectations for any kid. But you know what I mean. However, there are always times when I get a little scared and wonder if I am being naive. It's always great to receive positive reinforcement, which I got from meeting Millie. I'm also aware that being the family of a special-needs child enters us into a new community -- now I've made my first friend in that community. Even if we aren't active in it for a while, this was still a first step to rounding out all aspects of Oliver's life and helping to make it the best we can.
