Tuesday, June 7, 2011

I Didn't Want To Be An Advocate...I Just Wanted To Be Dad...

So I am beginning to realize that I will never not be in use as an advocate for Tommy. It's not what I wanted, but it is what he needs. I just wanted to be a daddy, not have to worry about whether the world was fair to him or for him. It turns out I won't get to make that choice.

I never quite understood before all the ways the world stacked against people who weren't in the fat part of the bell curve. Even though I don't think I was in the fat part of the bell curve either, I was at the top end of it, he is not.

It's amazing and a little amusing the things you begin to notice when you have a disabled child. Lack of a sidewalk for a wheelchair, stairs, things I always took for granted that make navigating with him a lot more of a challenge.

You also notice the looks from waiters and hostesses at restaurants as they seat you and you tell them that you don't need a kids menu for him. That one you learn to ignore. Because it takes too much energy to worry about whether or not the kid serving you at Applebee's understands the finer points of a G-Tube; or what the phrase NPO means.

Flying with Tommy has been an interesting adventure into the mind of the TSA as well as stewardesses. They look at his sealed cans of food like they are little bombs and like they need to open them. Fortunately they haven't, or perhaps it is unfortunate; because it means I can't demand the federal government reimburse me for the cost of replacing that food.

The first time I really flexed my advocacy muscles was before Tommy ever came home. He would eat and then reflux his entire meal, causing lots of aggravation for everyone and of course concern for him. Well his doctor had ordered a medicine for him that didn't help and in fact made a bad situation worse. In my youthful exuberance I politely informed the doctor that next time someone gave Tommy that medicine I was going to punch him in the face.

Fortunately I wasn't arrested; Tommy was taken off the medicine (Zantac, if I remember correctly) and we were all the happier for it.

I guess I should have realized then that it was only just beginning. I am a dad, but I am also his voice in this world and I have slowly come to accept that the latter means more, because it is the bigger job.

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