Monday, January 6, 2014


I read this article with real interest. I've heard a lot of similar stories of people whose preconcieved notions about handicaps have been shattered or drastically shifted by actually meeting someone with a disability.

I have to confess that I had to face that same paradigm shift as well. Until I'd met my niece Chelsea, I'd never really dealt with anyone with a handicap. Then, Jacob was born.

In the early years of life, we didn't know the full extent of Jake's handicaps. The Cystic Fibrosis was diagnosed pretty early, within a month or two of birth. Soon after, we began to suspect there were other developmental disabilities, and at some point it was suggested that he had Cerebral Palsy as well. It got to the point that I wanted to stop taking him to the doctor because every time he went he came home with a new diagnosis. And with each diagnosis came more treatment regimens and more issues to remember. It was very overwhelming.

When the final dignosis of CP was confirmed, the prognisis was much less clear. Cerebral Palsy impacts every patient in very different ways. Some are verbal, some are not. Some are more motile, others are not. We were told that the only way to know how it would effect Jacob would be to wait and see. I didn't like that. I wanted to know. Uncertainty wasn't my friend.

And, I confess, that I struggled with the possibility of having a son that couldn't communicate. I would love Jacob, no matter what. But it would be much harder on me to think that he wouldn't be able to learn, speak, and be able to fully interact with me and the world. That was my own prejudice.

I gained hope as he began to mimic words and parrot them back to us. It happened a bit slower than most kids, but not really. I was still very nervous, because I wasn't seeing any evidence that he was understanding any words, just making the sounds.

I can clearly remember one morning. I woke up because he was fussing in his bed. He was probably 1 1/2 or 2 years old at the time, but I'm not sure of that. I grumbled out of my bed, and shambled over to his crib bed. I looked over the edge, and he instantly smiled. That got me smiling, and I said, in my best baby-talk voice, "What are you fussing about?"

Through his grin he said, "Stinky!"

Suddenly all of my fears melted. I knew that whatever came, and whatever were his maladies and diagnosis, we'd be able to handle it all.

Now he's 14, going to school, reading books, playing minecraft, making youtube videos, sitting on councils for the Governor and testifying before the State Legislature. You never know...

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