Cerebral Palsy Support Group

I’ve been having a tough time writing for the blog lately as one of my original goals for this site has changed. I had hoped this blog might be useful for other people going through similar experiences, but have recently come to the realization that there aren’t other people, at least in similar enough situations for me offer helpful information. Besides, I don’t really have anything figured out. I also forgot about one of The Rules: never compare other, especially older handicapped children to yours because you’ll wonder if a) they are showing you your future and how you will stand it, and b) if that’s not your future because your child is sicker/worse off and their grim scenario is a luxury you can’t even dream of.

Being scared of other handicapped children leaves a bit of a problem for finding support groups, as much as I want to reach out. I’ve been given a few phone numbers of people who’ve been through “something similar” and have been terrified to call. Even just the waiting room at our therapy office scares me. . . watching the boy with the helmet who is rocking and moaning on the floor, I take a deep breath and think to myself, “these are my people now.”

Yet I don’t want to be all alone with this. I can’t be. I will drown in paranoia and sorrow. Sometimes I fantasize about Lydia as a starlet of the handicapped world. I even brainstormed an alternative fashion magazine called, “Neuro Bitch” that was going to feature punky, re-defining beauty type articles and fashion spreads featuring handicapped women. Then I realized that it could be a bit exploitative depending on the level of actual brain damage. Well. Probably best to let that business plan go.

But these paragraphs are already outdated because we did end up going to a support group last week. It was with the United Cerebral Palsy of Oregon and SW Washington group. Lydia has not been diagnosed with cerebral palsy. We decided that cerebral palsy was the closest to our problems (brain damage and all the things that go with that) although no doctors have actually used that term with us. I was so scared that if Mark hadn’t come with me I probably would never had made it out of the parking lot. Since he was with me I put on a brave face. And I am very, very glad we went. There were some amazingly strong people at the meeting with some seriously moving stories. It was hard not to cry. But most of all it was encouraging. Turns out it is possible to find the strength to keep going, to keep believing in a quality of life for your children, and to eventually see your children as children and not just focus on their disabilities. At the moment, I am consumed by what Lydia will not be, will not do and all the things wrong with her. But I know this is a phase of grief that will pass. It must pass. Because I love her too much to let that be who she is to me.

So on we go.

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