Johnathan’s Story

 

Johnathan came to us 11 1/2 years ago as a slightly blue, very irritable 9 pound 6 ounce butterball. He had this mesmerizing laugh from day one. He was 6 months old when a doctor told us he had Cerebral Palsy. But he was also 6 months old when we were told to institutionalize him, for he would be a great burden; he would never learn, advance, achieve. Although we can not prove its factuality, I had Norplant birth control, and a softball sized fybroid within my uterus, removed 2 weeks before I got pregnant with Johnathan. I know this is why he is the way he is.   Johnathan has slow growing myelin within his brain, PVL, ACC and unknown leukodystrophy. These are what cause him to be a very high-toned, non-verbal, quadriplegic. All of which truly means nothing, for there is nothing that can be changed by knowing any of it. We have learned that it does not matter why Johnathan is the way he is. What matters is that he is, and that he is with us.

Our lives revolve around Johnathan, and we wouldn’t have it any other way. He is always the one that helps lighten the load. Johnathan is what keeps every one of us in today, with a smile, and remembering that the little things are what are important. I would say that it must be those of us without "special needs" that are the burdens; we are certainly the burdened, not these special little souls that aren't as bothered as most by life’s hustle and bustle.Plus they truly allow us the escape by showing us what is truly important, what is truly worth our time.


 

He can't sit alone, but who wants to. He can't stand alone, but who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful.