Sunday, July 06, 2003

Two Heads Are Better Than One

Parents of children with special needs have to make so many decisions for their kids without really knowing what their children would want if their children were in a position to say so. Would my son request medication if he could pull his head out of his own private little world long enough to understand all the implications? Would my daughter have rather stayed in self-contained special-ed if she were sufficiently language empowered to know her wishes, appreciate the alternatives, and express a thought-out opinion? As heavily as the decisions to forego meds for the one and force mainstreaming for the other have weighed on me, I know they're nothing compared to the decisions made by parents in life-or-death medical situations.

That's why, in a weird way, I've been relieved to read the news stories about the latest set of conjoined twins to be separated. The surgery is every bit as risky, life-threatening and medically complex as in other recently reported cases. The sisters are connected at the head, and there's as good a chance that one or both will die or become seriously disabled as a result of the separation. It seems there's been a lot of stories lately in which parents and doctors and religious advisors are called together to decide whether a procedure that so gravely risks the lives of otherwise healthy but interconnected babies can be medically, emotionally and morally justified -- or, on the other hand, if NOT performing it can be so justified. I can't imagine the crushing responsibility of having to make a decision like that for another person or persons.

And that's what's so different about this latest story: The twins in question aren't babies, and the parents aren't the ones making the choice. The sisters are doing it for themselves. At age 29, they've decided that they'd rather die separately than live together. While all the same debates apply -- made more complicated by the fact that 29-year-old brains aren't as flexible as months-old ones -- at least the people who will have to live or die by the choice are the ones making it. I hope my kids will one day be mature enough and strong enough to make their own life-shaping decisions, and I pray they'll never have any this serious to consider.

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