Monday, January 15, 2007

Growing up

I do have thoughts on issues other than my idiot girl. But right now that seems to be what I write about. So I'll go with that. And then maybe try to prove I think about other things (like politics and movies and tv and food and. . .. .) as well.

There has been a case in the news recently. A family here in the northwest who made the medical decision (and found doctors, ehticists, and a publishing establishment to support them) to freeze their severely handicapped daughter in time. Physically she has been frozen as a young child. On a practical level, I can understand why they did this. And given that I know how difficult it is to make these decisions, I support their decision. Their objectives I can support: love the child, keep her included in their life circle as long as they can. If she gets too big, she'll be hard to carry, hard to include. I respond to this. I see what led them there. The main criterion I have come to use--balancing the life quality of the handicapped child with the life quality of family members. On this front, I can allow what they decided to do. In their situation, I can imagine coming to this decision. My child was never in so extreme a situation. So I won't judge.

On a more metaphorical level, this case becomes more troubling to me. I can understand the impulse. I never considered this possibility in a realistic way for my daughter. She functions at a much higher level. I would never have considered this for me. But I can understand the impulse. I look back with longing for the days when my daughter was young, beautiful, beloved by just about everyone who encountered her. As she gets older, she has become less charming. And fewer people are charmed by her--for long periods. She is still beautiful and charming for that first glance of a second or two.

More troubling, I encounter more frequently the anxieties, the worries, as I realize that Bevin isn't frozen in time. At some level I expected her to be. But she's not. I expected her to always be as she was in her late childhood and early teens. But she's not. She changes. And it's hard to understand why. She talks less. She has trouble sleeping. She gets upset more easily and throws little fits of "puffing." She gets hostile and runs around without her clothes on. She makes messes in her pants and wets her pants--a young lady trained totally from about the age of three. She has anxieties I can't understand. She gets angry. She takes her frustrations out on some unsuspecting person, less capable, in her surroundings. I don't want these changes. I want her to be frozen at her best, most capable, most charming moment.

And it's not entirely selfish. Bevin's life is better if folks are charmed by her. If she stays more like the charming, elfin, odd little thing she was as a child.

So I understand the impulse. For Bevin, she is capable enough that it was right to let her grow up. But I realize I have to expend more of myself to keep her as capable, as charming, as possible. Because Bevin's life is better if folks find it easier to deal with her. As her mother, I have to help keep her within the realm where people treat her kindly, enjoy her presence.

So I totally sympathize with those parents. Imagine a scenario that led to their decision that was generous, focused on that child they love. Not selfish. The adults must have a life in order to give the beloved, needy, totally clueless child a good life too.

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