Sigh.

I didn't want to post about this story.

I don't make a secret of being a parent, but I'm not a momblogger and I only rarely mention my kids here (I think). However, the last 24 hours have seen a lot of pundits saying "Unless you have a child like this, you can't understand..."

Okay then. I have a child "like this": my son is eleven, on the verge of puberty (we presume), doesn't walk, doesn't talk, etc. etc. He's very small (under 40 lbs. right now), but that could certainly change in the next few years; he has a well-controlled seizure disorder, but that too could change in the next few years. When his cognition is given a number, it's given in terms of months, though I don't put much emphasis on that kind of assessment. We carry him a lot. He's hard to carry. He's not going to get easier to carry. The day may come when we need help.

And still, I don't understand. I don't understand removing healthy tissue and functioning organs--it's hard enough to schedule and endure a surgery when it can't be avoided. Puberty is not an extraordinary event. Growing is not a sin or a disease--it's what kids' bodies do, even disabled bodies. When we need help, we'll get it, somehow--but my son's body is fine as it is.

And one more thing: my son is no angel, no doll, no pet. He's a kid. He's a person. He's a human being. Treat him that way.

Postscript: Stories about parents who (quietly) find doctors to do appalling things to their disabled children do circulate among parents and teachers (and I imagine doctors and nurses and other professionals). I remember hearing long ago about a family that had their kid's vocal cords surgically altered because the kid couldn't talk, and the noises he (she?) did make were unpleasant to them. You hear stuff like this, sometimes. I generally hope and pray that they're urban legends, or at least distorted reports of something less troubling; when I heard about the Ashley case about a year ago, I wanted to believe it was one of those. But when a family puts up a website to explain their decision, that hope is surely lost.

UPDATE: Two more mothers who are speaking up--and they're already doing the heavy lifting:
Nufsaid
Dream Mom
and Thirza has an important point to make at Fit of Pique: "Not all caregivers are nice people." Too true.