This post is from 2011.

This past week Terry Gross – host of NPR’s Fresh Air – interviewed Ian Brown in relation to his new book “The Boy in the Moon”. The book is about life with his disabled son. My husband Tim had heard that Terry Gross’ questions were problematic and asked me if I would listen to it today. I did and this is what I wrote:

“Stop right there,” Terry Gross butts in, while her guest, Ian Brown, is speaking about his disabled son and a conversation with his wife about what the world would be like without their son Walker. “Stop right there. I just want to say that I’m not perfect,” says Gross. “When your wife talks of a world with no persons like Walker would be perfect, like Sparta; I just want to say that I’m not perfect.” (Implying, I guess, that she is not disabled but still not perfect). I’m not perfect and I don’t need someone like Walker to remind me of my imperfection, Gross goes on. No, no, do you understand Terry? We—parent of Temma and parent of Walker—are not speaking about the difference between perfection and not perfection. We are attempting to speak of the difference between a world without Temma in it and our world with Temma and Walker and everyone else. This world ain’t no Sparta. That world…..over there…..that’s Sparta.

We have entered another world; a world with Temmas and Walkers; a new world opened up to us by our children. It’s “an alternate world”. ”Walker is an alternate way of being because there is no success with Walker,” says Brown. Tim and I sometimes joke that Temma came from another planet, a planet called “Poog.” She is oh so beautiful, but oh, so not perfect or successful. Or is she? I like how Ian Brown speaks of reaching to Walker and to his world. I’m reaching too. It feels like I’m constantly reaching to Temma. And when I’m not…well then, she’s reaching to me from Poog and wondering where she has landed.

photography – tim lowly © 2011