Sunday, February 12, 2006

In Search of a Smile

I was pretty excited today to take my son to the movies. My son is severely disabled and is not able to do much anymore. He is pretty much bedridden and it's hard to find things to do, let alone things that make him laugh. Over the past year, he has lost his ability to walk on his knees, sit up and hold his head up. But he has a great smile and a great sense of humor.

Last summer, I took him to the movies. During the previews, we saw one for Curious George. My son really laughed during the preview so I made a mental note that we needed to see that movie.

We went to the show today. He was excited to get out. We have a great theatre that has a lot of spaces for wheelchairs. As we sat there, I realized that he was going to have a hard time watching the movie because he can't hold his head up at all. To top it off, he has a vertical gaze palsy which makes looking up more difficult. At this point, I wondered why I had bothered.

I really just wanted to see him smile. Sounds hokey and maybe silly but the smiles are getting few and far between. My son now has a degenerative condition related to a rare gene he has. He is one of a handful of people in the world with this gene. His days are numbered and I want to remember all the smiles I can. And his is really special.

But Curious George didn't deliver today. I held his head up for almost 80 of the 87 minutes of the movie. And I still didn't get any smiles.

So it's back to the old stand bys tomorrow. We'll play the Silly Six Pins Bowling Game after breakfast where he will knock down the bowling pins with his head and smile with delight at the music it makes when he gets a strike.

So much for the movies.

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