Since I praised the last cross-post for its honesty, I figured I might as well try some of my own…
I am not o.k. with this. And by “this” I mean the Prader-Willi.
It is not o.k.
I am not o.k.
This is a seriously screwed-up syndrome, and every time I explain it to somebody it takes every ounce of restraint I have not to end my summation with a string of f-bombs. It’s not bad enough that there is the insatiable hunger, there’s the out-of-whack muscle-to-fat ratio on top of it. And if that’s not bad enough, there’s the high pain threshold, so even common-sense self-protection is out …oh and the never vomiting, that’s the cherry on top. But that’s not the half of it, there’s the OCD, the skin-picking, the high possibilities of scoliosis and autism….and, oh yeah don’t forget the cognitive delays. I didn’t even finish the list either. Oh, and spare me “the range” — yeah, yeah, I know all about “the range” — what range of that list would be o.k. with you?
My faith is coming up short on this one. I know that there are worse things in life than Prader-Willi Sydrome, but those things aren’t happening to my kid. I believe in science, I believe in evolution, I believe in genetics — but I also believe in God and that this did not have to happen to my child, or anyone’s child, and I can’t wrap my mind around what a screwed-up planet I live on that even a third of the aforementioned symptoms should be experienced by the same person, let alone my kid. All the OT, PT, early intervention, support groups, HGH, happy thoughts, and speeches about “what a unique opportunity/blessing/blah-blah-blah this is” in the world aren’t going to ever make it o.k.
So I’m pissed. And since I have decided to give up my brave face for Lent (along with a few other things), well…there you go. I haven’t accepted this, I remain as devastated as I was eleven months ago when we got the diagnosis, only now I am royally pissed off and bitter on top of it.