Sunday evening, we were driving in the truck after taking the Golf to get its exhaust system replaced. Buddy was pretending to "talk" on my cell phone, so Husband got his out and played along . . . while he was driving.
I admonished Buddy, "When it's your turn, make sure you don't use your cell phone and drive at the same time, like Daddy is doing."
Husband quietly replied, "Do you think he actually will drive someday?"
I really don't know--I've not heard of any with WS who do.
Sunday morning, our pastor asked about the WS get-together from the previous week. "Now, is this something he'll eventually grow out of?" No, he has a genetic disorder--not a disease--which pervades every cell of his body. It's with him for life.
"And, is it one of those things where he'll live with you forever?" Possibly. It's difficult to know at this point how severely he'll be affected and what his limitations will be.
In a very real sense, there's a mourning that goes on when a diagnosis such as Williams syndrome is received. You begin to think of all the things you took for granted that your child would do: talk, run, color in the lines, learn to read, learn to drive a car, easily make friends at school, play sports, leave home, go to college, get married, have kids, pursue a career path. And you realize that many of them simply won't happen.
Although the initial shock of the diagnosis wears off, that sense of loss continues to present itself in various and sundry ways. It's not something that we morbidly dwell on but it does constantly reside in the backs of our minds. And it's the reason that we're involving him now in as much therapy as possible, so that his life is as full as it can be.
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