A Father's Quest To Help His Severely Disabled Son

Ian Brown is a feature writer for Toronto's The Globe and Mail newspaper. i i

Ian Brown is a feature writer for Toronto's The Globe and Mail newspaper. St. Martin's Press, LLC hide caption

itoggle caption St. Martin's Press, LLC
Ian Brown is a feature writer for Toronto's The Globe and Mail newspaper.

Ian Brown is a feature writer for Toronto's The Globe and Mail newspaper.

St. Martin's Press, LLC

When he was 8 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 3 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, his age is between 1 and 3, and he 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?"

The Boy in the Moon
The Boy in the Moon
By Ian Brown
Hardcover, 304 pages
St. Martin's Press
List Price: $24.99

Read An Excerpt

Raising Walker

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 afterward, 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 us got two consecutive nights of sleep in about nine years," Brown says. "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."


Interview Highlights

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."

Excerpt: 'The Boy In The Moon'

The Boy in the Moon
The Boy in the Moon
By Ian Brown
Hardcover, 304 pages
St. Martin's Press
List Price: $24.99

For the first eight years of Walker's life, every night is the same. The same routine of tiny details, connected in precise order, each mundane, each crucial.

The routine makes the eight years seem long, almost endless, until I try to think about them afterwards, and then eight years evaporate to nothing, because nothing has changed.

Tonight I wake up in the dark to a steady, motorized noise. Something wrong with the water heater. Nnngah. Pause. Nnngah. Nnngah.

But it's not the water heater. It's my boy, Walker, grunting as he punches himself in the head, again and again.

He has done this since before he was two. He was born with an impossibly rare genetic mutation, cardiofaciocutaneous syndrome, a technical name for a mash of symptoms. He is globally delayed and can't speak, so I never know what's wrong. No one does. There are just over a hundred people with CFC around the world. The disorder turns up randomly, a misfire that has no certain cause or roots; doctors call it an orphan syndrome because it seems to come from nowhere.

I count the grunts as I pad my way into his room: one a second. To get him to stop hitting himself, I have to lure him back to sleep, which means taking him downstairs and making him a bottle and bringing him back into bed with me.

That sounds simple enough, doesn't it? But with Walker, everything is complicated. Because of his syndrome, he can't eat solid food by mouth, or swallow easily. Because he can't eat, he takes in formula through the night via a feeding system. The formula runs along a line from a feedbag and a pump on a metal IV stand, through a hole in Walker's sleeper and into a clever-looking permanent valve in his belly, sometimes known as a G-tube, or mickey. To take him out of bed and down to the kitchen to prepare the bottle that will ease him back to sleep, I have to disconnect the line from the mickey. To do this, I first have to turn off the pump (in the dark, so he doesn't wake up completely) and close the feed line. If I don't clamp the line, the sticky formula pours out onto the bed or the floor (the carpet in Walker's room is pale blue: there are patches that feel like the Gobi Desert under my feet, from all the times I have forgotten). To crimp the tube, I thumb a tiny red plastic roller down a slide. (It's my favourite part of the routine — one thing, at least, is easy, under my control.) I unzip his one-piece sleeper (Walker's small, and grows so slowly he wears the same sleepers for a year and a half at a time), reach inside to unlock the line from the mickey, pull the line out through the hole in his sleeper and hang it on the IV rack that holds the pump and feedbag. Close the mickey, rezip the sleeper. Then I reach in and lift all 45 pounds of Walker from the depths of the crib. He still sleeps in a crib. It's the only way we can keep him in bed at night. He can do a lot of damage on his own.

—-

This isn't a list of complaints. There's no point to complaining.

As the mother of another CFC child once told me, "You do what you have to do." If anything, that's the easy part. The hard part is trying to answer the questions Walker raises in my mind every time I pick him up. 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? "We spend a million dollars to save them," a doctor said to me not long ago. "But then when they're discharged, we ignore them." We were sitting in her office, and she was crying. When I asked her why, she said "Because I see it all the time."

Sometimes watching Walker is like looking at the moon: you see the face of the man in the moon, yet you know there's actually no man there. But if Walker is so insubstantial, why does he feel so important? What is he trying to show me? All I really want to know is what goes on inside his off-shaped head, in his jumped-up heart. But every time I ask, he somehow persuades me to look into my own.

Excerpted from The Boy in the Moon by Ian Brown. Copyright 2011 by Ian Brown. Excerpted by permission of St Martin's Press. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

Books Featured In This Story

The Boy in the Moon

A Father's Journey to Understand His Extraordinary Son

by Ian Brown

Hardcover, 293 pages | purchase

Purchase Featured Book

Title
The Boy in the Moon
Subtitle
A Father's Journey to Understand His Extraordinary Son
Author
Ian Brown

Your purchase helps support NPR Programming. How?

Comments

 

Please keep your community civil. All comments must follow the NPR.org Community rules and Terms of Use. NPR reserves the right to use the comments we receive, in whole or in part, and to use the commenter's name and location, in any medium. See also the Terms of Use, Privacy Policy and Community FAQ.