Wednesday, June 18, 2008

WW: Living or Waiting?

No cross-dressing cows this week, sorry. I don't know if I am harder to deal with when I am being silly or when I am being serious. But, I'm not feeling the whole silly thing today. 

I love this picture and I hate this picture. I love this picture because it reminds me of how healthy, strong and athletic my son is. I look at it, and I see the swimmer, fighter and competitor in him. But I also hate this picture because it's just so misleading. My son, barring a really, really huge miracle, will die before me. I will have to watch him suffer, unable to do a whole heck of a lot about it. As if that wasn't bad enough, the diagnosis doesn't come with a timeline, so all I do is wait.

Oh, most of the time, I stay in a nicely wrapped little cocoon of denial. Look at the picture... It's easy. There's no way he could really be THAT sick. And maybe he's not. But there's just no way to tell. And to confuse things more, just because he's healthy today, doesn't guarantee his health tomorrow. Believe me, the doctor reminds me of that constantly.

But sometimes, like when he has a cold, I just get this wave of panic and sadness that is just so heavy. The poor kid can't catch a cold without the rest of the family freaking out. And that's because maybe it's not just a cold. Or even if it IS a cold, it could be damaging his precious lungs. So I tuck him into bed and go to bed, myself. Except I can't sleep. I lie there in the darkness, listening to him cough. And even in that darkness, I turn my head to see my husband, wide awake, jaw clenched, listening to him cough, too. But we don't talk about it. Ever. Going there would just make it so... real.

So I stay on top of him. Watching every pill he takes, making sure he doesn't miss a treatment... EVER. I text him when he's away to make sure he didn't forget to take his medicine. I am a complete maniac, unwilling to relinquish control. But the problem is, he's growing up. And even though his disease limits his future, he has big plans. Which is good, and how it should be. But 3 years from now, when he is away at college, will he remember to take his medicine? Will he do his breathing treatments? Will he get the exercise he needs to stay healthy? Or will it be the beginning of the end?

Oh, all this morbidity is just so unlike me and such a buzz-kill. It's much more fun to stay hopeful and know God will take care of us...somehow. I would rather laugh and think about all the thousands of ways this same son of mine drives me nuts. He's a special kid, living a special life. And that's exactly what I have to remember... he's living.

Thanks to Angie for letting me be a little (ok, a LOT) self-indulgent. Back to silly next week.