Thursday, May 12, 2011

What a "broken child" reminds us about life

There's an amazing exchange from Fresh Air when Teri Gross interviews Ian Brown, author of "The Boy in the Moon: A Father's Journey to Understand His Extraordinary Son," a memoir about life with his 15-year old son Walker, who suffers from a rare and severely disabling condition called cardiofaciocutaneous (CFC) syndrome.

Brown is discussing a quote from his wife imagining what the world would be like without people like Walker, when Teri Gross interrupts:

Brown:
What sort of a world would it be without Walkers? A world where there are only sort of Masters of the Universe...would be like Sparta.

Teri Gross:
Could we just stop here? I'm not a Master of the Universe. You know, I'm not broken, physiologically broken, like your boy. But I'm hardly a Master of the Universe. I think most of us are not Masters of the Universe. We're all broken in our own special ways. So it's not like we're perfected people and we need constant reminders of imperfection. I'm not arguing for abortion here, I'm just saying...we're not a population of perfection.

Brown:
No, no, absolutely not... although, you know, the imperative to know what to do, to have the answer, to...have the solution. I think that's a very strong imperative. And Walker is...he's more than a reminder of imperfection. Gradually, I've begun to realize, he is a way of...not the only way of being, but he's an alternate way of being. Because you can't be successful with Walker. You can't "get it done." You can't "just do it," as the ad says. You have to actually just be with him

I remember precisely where I was when I heard this: on Forster St., heading over the Harvey Taylor Bridge taking my son home from school. As I listened, I was reminded of something very current and yet age-old. An obsession with "winning." What Brown is saying means this to me: Walker is important and his life is meaningful because he presents us a situation that is not winnable. It just is. The work involved with raising and caring for Walker will not end in triumph. It will persist, day by day, for as long as it lasts. That is its limitation and, in the end, its beauty.

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