When he was eight months old, Walker Brown was diagnosed with Cardiofaciocutaneous syndrome (CFC), a rare disorder that left him with severe cognitive, developmental and physical disabilities. By the time he was three years old, his father says, his medical chart was 10 pages long.
Now 15, Walker wears diapers and an apparatus on his wrists that prevents him from hitting and scratching himself. Developmentally, he is between one and three and will require constant care for the rest of his life.
"He can't speak," his father, Ian Brown, tells Fresh Air's Terry Gross. "He can't do a lot of things — he can't swallow, so he's fed through a tube. We don't know how well he sees or hears. We know he sees and we know he hears and I think it might be getting a bit better, but because he can't talk, he just has no way of rationally communicating — so we spent a long time trying to figure out other ways to connect."
Brown has spent years trying to learn about his son's condition, a rare genetic mutation that affects only 300 people in the world. He writes about his journey raising Walker — and his mission to find the answers to both medical and philosophical questions — in his new memoir, The Boy in the Moon.
"The hard part is trying to answer the questions Walker raises in my mind every time I pick him up," he writes. "What is the value of a life like his — a life lived in the twilight and often in pain? What is the cost of his life to those around him? ... If Walker is so insubstantial, why does he feel so important? What is he trying to show me?"
When Walker was born in 1996, he immediately had trouble sucking and digesting his food. His pediatrician, several days later, posed a question to Walker's parents: "We do want this child to live, don't we?" At the time, Brown says, he thought the question was rhetorical. "Of course," he replied to the doctor.
"But afterwards, I wondered if what he was saying, 'You could starve him. Or you could let him die,'" he says. "And this is the strange thing: Walker is part of a strange community — almost like a new genre of human being — who has been kept alive through medical technology. Twenty years ago, Walker would not have lived. But medical technology, this brilliant thing, keeps him alive, but then the doctors say, 'Here, he's yours.'"
At home, Walker required constant attention. His feedings were complex and could take hours. As a child, he violently head butted himself against walls and other people and frequently woke his parents up at night.
"We figured, because we took alternate nights, that neither one of got two consecutive nights of sleep in about 9 years," says Brown. "Your days really blend into your nights. After a while, you don't really notice it."
When Walker was 9, Brown and his family made the decision to move him to a group home. Walker was 65 pounds and getting bigger, and Brown was worried he could no longer carry him up and down the stairs of their home. It was also taking a toll on Brown's relationship with his wife, Johanna, and with their other children. But it was still an agonizing decision to send Walker away.
"I still remember that day," he says. "We all drove up there, we dropped him off ... and it's about 40 minutes from our house. We dropped him off and nobody said a word. We got home and there was so much time. So much of it. It was a really terrorizing decision — but a good one, I suppose, in the end."
On asking his wife if she would have aborted Walker
"This conversation came up between Johanna and I. We would often talk at night because that was the only time we had to talk. And she said, 'Well you can't ask me that question.' I said, 'Why not?' She said, 'Well, Walker is Walker. He's a person. I have a relationship with him. He's a story. He's a metaphor. He's all these different things. Once you have a story, once you have a metaphor, once you have a person, this relationship, you can't. But when Walker was a fetus, before I knew him, yes, I would have had the abortion.' Of course, then the conversations would go on from there and I would say, 'Well, so then you wouldn't have Walker in your life.' And she's his mother, right? She produced him. Her body gave him into the world — this broken boy — so she has very complex feelings about it."
On disability masochists
"I think a disability masochist is somebody who made the decision to make their disabled child the most important thing in their life and the only important thing in their life. And they commit to that position and then when reality suggests there are other decisions, they get angry about it. It's like anybody who concentrates on one point of view and only one point of view. If you contradict them, they get nasty. You see it in political life every day. You often hear from these people something that drives me mad. It's one of the reasons I didn't want to write a book like this and one of the reasons it took me so long to write the book was because I didn't want to write a 'misery memoir.' These misery memoirs, in addition to being badly written, you get the same sentimentality all the time: these are very special children, given to very special parents, by a very special God. The God thing is not often there but it's often tacked on. And I think to myself, if Walker is God's idea of a gift, then God needs to read Emily Post. Because a jar of jam or a bottle of wine would have been fine, thank you very much."
On the expenses of caring for Walker
"It's always a problem, [thinking] 'Will there be money in 10 years time? Will there be money in 20 years time? Will there be money after I'm gone?' There are incidental expenses that I pay for — his feed before he went in. It changed once he got into the [Canadian] system because it pays for that care. Before he went into it, it was much more expensive. I figure it costs $200,000 a year for him to live there — probably about $8 million for his life. That, believe me, it's not something I take for granted. That's why I'm so keen to figure out what value Walker and people like him have because I think they give us more than we will ever give them and if we could begin to understand that or feel that, then it might make us feel better about paying all that money." Copyright 2011 National Public Radio. To see more, visit http://www.npr.org/.