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• Friday, February 9, 2007 06:04 AM

  My Thoughts

  I'm not judging the parents, in the sense of sitting here saying "how dare they" or "they're creepy" or anything like that. I don't know enough about their situation or about the debate that took place among the doctors at the hospital.

  However, I have read three articles about this, and my reaction every time is to feel freaked out by the story. I think the reason for this is that this procedure seems to have been done for the convenience of the care-givers. Maybe convenience is the wrong word, because it trivializes the difficulty of what her parents are undertaking in caring for her. I'm not saying it was wrong to do it, because she's lucky to have loving parents who are committed to taking care of her as long as they are able, and it sounds like what they've done will enable them to continue caring for her a lot longer...but there is still something unsettling about making major alterations to another person's body to make care-giving easier.

  Also, about the "pillow angel" thing, what is unsettling about that is not the term, so much, as the language that surrounds it. They seem to like that she "stays where they put her" and they want her to continue to "delight" in being carried around. Maybe that strikes a nerve because it's natural for parents of normal children to feel like their kids are growing up too fast, and perhaps wish in a tiny corner of their mind that their sweet little babies could stay that way, just a little bit longer. Isn't that the tragedy in all of this, though? That's she's never going to pick up her head, roll over, crawl, and finally walk? That she's never going to cease to "delight" in being carried around by her parents, as normal children inevitably do? I'm not judging them for any of this, either...I'm sure they went through and continue to go through considerable grief that their daughter will never do those things, and perhaps their positive language is just a way to put a positive spin on a tragic set of circumstances, after years of having coped with it and having processed the fact that she'll never do those things.

  As outsiders, we haven't had the time to process all of this the way they have, which is why it seems shocking to many of us.

  Again, I'm not trying to judge, just trying to explain some of the shock many people seem to feel.

  —No matter what, it's a tragedy
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