Christopher Rush 1983

His wings are his legs and he runs around with the other kids. Life is a ball and why shouldn't it be? Even if you have musculardrophe, you have the greatest friends, teachers, and you're the musculardrophe association national poster child. You've been to see President Reagan with Jerry Lewis. Jerry gave you a wonderful dog you named Chocolate Chip. and your mom and dad love you without a doubt forever. Okay. Well, Christopher was first diagnosed when he was seven months old as having muscular drophy. So, for 7 months, we thought we had a perfectly normal healthy baby boy. And it's very shocking to all of a sudden find out that you don't and that you have a very guarded prognosis as far as life expectancy with distrophe, any type of the distrophies. We uh at first were of course devastated by the by the news that Christopher was in fact distrophic was diagnosed as having uh Warden Kaufman disease. The devastation eventually moved to to anger. Uh we were angry at everyone. We were angry at uh at the doctors. We were angry with each other. We eventually worked our way out of that and it's made our lives a little bit easier because now we we have a direction that we want to move in. It's been difficult. First, we never thought he'd live to be 2 years old and now he's going to be seven in September. So, we feel that we're very lucky that God has been with us. We've had some difficult times. The kids with distrophe are very prone to pneumonia and Christopher's had pneumonia about four or five times. He's been a remarkable inspiration to us. But that doesn't put aside something that we continually live with every day. We walk around perpetually with this with this cloud over our head. We can we can laugh and we can sing and have great times together. But there's a heady realization of course that uh Christopher still has distrophe and something that we've learned to uh learn to live with with distrophy. It's not so much the uh the actual fear as it is the anticipatory one. We don't think so much about u what's happening right now as will we have a date for the senior crime. Well hell that's 15 years from now. A lot of the problems with destrophy seem to center around what's going to happen tomorrow. And we perpetually have to bring ourselves back to today. We just have to think a little bit more about tomorrow. And we thank God when the tomorrow does come because we know we've had him for another day. Christopher requires physical therapy and it's very painful for him. At the mention of it or that it's time for it, the tears well up in his eyes and uh he wants to put it off. He wants to wait. He'll think of every excuse. And so we do. He lays down on the floor and we begin to stretch his legs and he begins to cry and scream and he begins to say, "Mom, you don't understand how much this hurts and why do you do this to me?" And it's very hard to hurt somebody that you love to maintain their body. No, no child should have to go through there. No child should have to go through that. No child should have to go through that.