Monday, February 1, 2010

From the other blog...Coming of Age and Growth Attenuation

My 15 year old daughter started her period two days ago. For any girl this is a milestone of sorts, welcomed or not, but for me it has particular significance.

My daughter had her stroke just a few days before her sixth birthday. Once it became obvious that she wasn't going to die, her prognosis was "vegetable". She would have been a perfect candidate for what the medical people are calling "Growth Attenuation" (this did not exist at the time), because she was both extremely physically and cognitively disabled. This is a "treatment" which involves the removal of a girl's uterus, breast buds and some fiddling around with the pituitary via drugs to keep her small for as long as she is alive. Such a treatment removes such "inconveniences" as breasts, menstrual cycles, body hair in all the wrong places and extra weight and height. The argument is that a small body can have a better quality of life...easier to carry and care for...regardless of the services available in any given community.

I want to keep this post reasonably short, so it would be good for you to go read Bill Peace's recent post on the subject here. I like pretty much everything Bill writes because he is not an extremist. Whether or not I agree with him fully on any topic is irrelevant, as Dr. Peace always writes thoughtfully and in a balanced manner, without ever compromising his principles. In any case, he hits several nails on the head with this one.

Peace also makes the point right away that the whole growth attenuation (GA) issue brings about very strong reactions pro or con. There is no in between about the thing. I stand firmly in the "horrified at the thought" camp as does Peace, but his post made me have to think about the "why" behind my own thinking. Reams of material exists on the subject and many excellent points against GA are made in dozens of disability blogs and academic papers, and I agree with all of it.

But my personal reasons for being against it lie beyond logic...I may disappoint you on this one...

My daughter is a person.

She was a little girl and now she is a woman.

I have watched all the milestones of childhood pass her...and me...by: the bike riding, the swimming, the skating, the parties, the girlfriends, the boyfriends....all of them reflected in life around me but never reaching my doorstep. Always the bride's maid, never the bride....

I have not missed her growing up and changing, though. It is one thing she is doing with grace and beauty. The stretching limbs, the growing hands (she has the most beautiful hands!), a curve here and there, the maturing face. I get to watch my little girl growing up, just like all the other parents do.

And she is sooo beautiful! Her perfection takes my breath away.

I am saddened by parents...encouraged by doctors... who will miss out on this and who will succumb to viewing their daughters as burdens that need to be mitigated in some way.

It speaks volumes, doesn't it, that one's daughter becomes a problem to be solved and not a person to be reckoned with...a human life to be expressed in whatever way?

Have you ever been to an art gallery and seen all the pieces in it? They're all so different aren't they. Each has appeal to someone on some level. Each piece reaches out to some body and touches them, makes them react and feel something. They are all valuable works of art, built from a blank canvas, one brush stroke at a time, line upon line.

That's my girl. Growing and changing, line by line, brush stroke by brush stroke, a work of art by the greatest Artist. I simply stand back and watch.

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