Since my son was born in 2002, I have had a lot of bad days. Watching him get taken to surgery nine times, seeing catheters shoved into places that boys shouldn’t have catheters shoved, watching him get stuck for IV’s so many times that I’ve lost track and seeing him almost die twice will tend to make every day feel like a Monday.
There have been so many struggles that parents of a typical child can’t even imagine. And before someone comes along and tells me how fortunate I am that my son can walk and talk, I will say that I know we are lucky. I have spent enough time around children in the hospital to know that things could be horrifically worse.
But, there have been struggles. It took 13 months before tube-feeding wasn’t an ever-looming threat and it was 18 months before he took his first step. That was after weekly physical and occupational therapy appointments and more genetics tests than even the geneticists knew existed.
He is almost nine and he vomited while eating just yesterday. He can’t button his own pants. We found out last week that he needs hearing aides.
As a parent, you fight through these situations. You modify his surroundings, you buy him velcro shoes, you cut his bites into little pieces. You, quite simply, adapt.
But, there are certain challenges where there is no fix.
My son is not only medically different from his peers, but also physically, emotionally, behaviorally and socially. He is tiny, quirky and the most unique individual I have ever known. Most adults “get him”. Most kids, don’t.
For the past six weeks, my son has been enrolled in a basketball clinic at his school. This was more of a social exercise than an athletic one, as my almost nine year old weighs only 43 pounds.
Over the last month, my boy learned to dribble and bounce-pass and he learned to play one heck of a man-to-man defense. He had fun. He tried his best.
He has no idea that I sat in the stands and cried this afternoon, because I watched every kid on the court look right through him when it came time to pass a teammate the ball. My husband knew I was crying, as he sat detaching himself from the situation, but I told him that it was making me sad to watch and he replied, “I know. It’s awful.”
I can’t fault the boys. They’re young and they wanted to win. They were smart enough to know that my son couldn’t make a basket. If he was on the other side of the ball as a typical child, then he would have probably done the same thing.
But, he wasn’t on the other side of the ball and he is not a typical child. I watched him holding his hands in the air, waiting for a pass, for over an hour. He got a chance to dribble twice, when one of the parent volunteers TOLD the boys to pass it to him. He loved those few, fleeting seconds. I could see the pride in his face.
As a parent, you want your child to shine, not be ignored. You want the world to see what you see; that inside the quirky kid is a funny, smart, gentle soul. Okay, he’s obstinate too, but everyone does see that.
It is so hard to have a child like mine, but it is also very special. It is a joy to see him succeed and to go places I never thought possible. To me, he is a gigantic force in the universe.
But, to the boys on the basketball court, he is but a speck.
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