The Boy in the Moon: A Father's Search for His Disabled Son (32 page)

I realize it’s not much to go on, not much of a light to see by. It easily wavers. But it’s the best I can do.

We waited for hours again when we returned for that second try at an MRI of Walker’s brain. Once again I wheeled him up and down the halls in his fancy red stroller, up and down and out the door into the longer hall and back, up to the coffee stand and back. Three hours ticked by.

I finally abandoned the stroller, and sat down with my back to the glazed brick wall in the hall next to the waiting room. Walker was standing two feet away, where the wall turned a corner. Olga was somewhere behind him.

Suddenly he swooned, and fell, like a slipping stack of plates, into my arms. I saw him look and aim himself. There was no mistaking what was happening: he was having a seizure. I had heard accounts of seizures in other CFC children, and the staff at his home had thought on two occasions he might have had a mild attack. But I had never seen anything like this, not in Walker. His eyes began to twitch back and forth like metronomes; his arms jerked faintly. His heart, I could feel it through my legs, was racing like a robin’s. He was trying to look into my eyes. He looked scared.

“Do you need some help?” another parent asked from the vestibule, but I shook my head no. I knew what to do. I knew to cradle his wan body in my strong body, wait with him while the shuddering passed, be there when his twitchy eyes found me again. Two minutes went by. It was unlike any other thing. A random and uncontrolled firing of neurons: that is the medical explanation of a seizure.

But it wasn’t that which filled my mind. I held him in my arms as quietly as I could, and I thought: this is what it will be like if he dies. It will be like this. There was nothing much to do. I didn’t fear it. I was already as close as I could be to him; there was no space between my son and me, no gap or air, no expectation or disappointment, no failure or success: only what he was, a swooned boy, my silent sometimes laughing companion, and my son. I knew I loved him, and I knew he knew it. I held that sweetness in my arms, and waited for whatever was going to happen next. We did that together.

acknowledgements

I wrote this book with the help of deep ranks of people too numerous to mention here. In addition to the people who spoke to me for this book, to explain the complications and implications of Walker’s condition, I am especially grateful for the specific help of the late Dr. Norman Saunders, Walker’s pediatrician, and Sally Chalmers, his head nurse; Dr. Saunders’ successors, Dr. Nessa Bayer and Dr. Joseph Telch; Diane Doucette and Tyna Kasapakis and the legion of children and grown-ups who have befriended and helped Walker at Stewart Homes in Toronto; Minda Latowsky, Lisa Benrubi, Paul McCormack and DeLisle Youth Services; Alana Grossman and her teachers at Beverley Junior Public School in Toronto; Dr. Edmund Kelly at Mount Sinai Hospital, and Judith John at the Hospital for Sick Children in Toronto. I have been continuously grateful, as well, for the unerring counsel and steady encouragement of Dr. Bruce Barnes. I owe Jean-Louis Munn, of L’Arche Canada, a good French meal, as well.

It took a long time to write this book because it has taken a long time to live it. The generosity of my colleagues at the
Globe and Mail
has been bracing, to say nothing of a godsend. Editor-in-chief Edward Greenspon and deputy editor Sylvia Stead granted me time away from my regular responsibilities at the newspaper. Carl Wilson edited an early version of some sections of this book, which became a series in the newspaper. Cathrin Bradbury, my longtime editor and friend, was the person who convinced me to write about Walker in the first place, and who later steered that writing into a book; her keen eye and alert editorial judgment have been Walker’s best advocate ever since. What Cathrin started, Anne Collins, my editor at Random House Canada, finished, with the able assistance of Allyson Latta, peerless copy-editor. Anne’s skill in helping me find this book’s through-line was surpassed only by her patience, which is so immense it warrants genetic analysis on its own.

At the very edge of my composure, I must thank some dear friends, who not only kept us company through the darker moments of Walker’s struggles, but more importantly became his friends and made him part of their lives. Their kindness has become my definition of grace. Before Olga de Vera, Hayley’s and then Walker’s nanny, I am, quite frankly, speechless. My pal and colleague Colin MacKenzie and his wife Laurie Huggins were the reason we finally found lasting care for Walker. My brother, Timothy Brown, and his partner, Frank Rioux, befriended Walker literally from the moment he was born, without a blink of hesitation or qualm; took us on holidays, cooked us meals, gave me a place to write, loved the boy. Two couples—Allan Kling and Tecca Crosby, and John Barber and Cathrin Bradbury—have been the best friends Walker could have: they shared summer cottages, took him on weekends, became his and our favourite refuge, and never accepted a word of thanks. Their children—Daisy Kling, and Kelly and Mary Barber—were equally decent, and treated Walker like their (always) little brother. Don’t think I didn’t notice.

Finally, I must do the impossible and describe my gratitude to my daughter, Hayley, and my wife, Johanna, Walker’s sister and mother—my steadies, my best advisers, my sweetest solace in those darkest nights, and Walker’s favourite companions. For good reason: their love knew no hesitation, no start and no finish.

Toronto, Canada
    April 23, 2009

permissions credits

Grateful acknowledgement is made to the following for permission to reprint previously published material.

“Anecdote of the Jar,” from
The Collected Poems of Wallace Stevens
by Wallace Stevens, copyright © 1954 by Wallace Stevens and renewed 1982 by Holly Stevens. Used by permission of Alfred A. Knopf, a division of Random House, Inc.

“Summer 1983” by Mary Jo Salter. Used by permission of the author.

“Do Not Be Ashamed” by Wendell Berry, copyright © 1999 by Wendell Berry from
The Selected Poems of Wendell Berry
. Reprinted by permission of Counterpoint.

Ian Brown
is an author and a feature writer for the
Globe and Mail
whose work has won many National Magazine and National Newspaper awards. He was the host of CBC Radio’s
Talking Books
, and is the anchor of TVOntario’s two documentary series,
Human Edge
and
The View from Here
. His previous books include
Freewheeling
, which won the National Business Book Award, and
Man Overboard
. He lives in Toronto.

Copyright © 2009 Ian Brown

All rights reserved under International and Pan-American Copyright Conventions. No part of this book may be reproduced in any form or by any electronic or mechanical means, including information storage and retrieval systems, without permission in writing from the publisher, except by a reviewer, who may quote brief passages in a review. Published in 2009 by Random House Canada, a division of Random House of Canada Limited, Toronto. Distributed in Canada by Random House of Canada Limited.

www.randomhouse.ca

Random House Canada and colophon are trademarks.

Some of the material in this book was first published, in different form, in
The Globe and Mail
. Permission to use that material is gratefully acknowledged.

Library and Archives Canada Cataloguing in Publication

Brown, Ian, 1954–
   The boy in the moon: a father’s search for his disabled son / Ian Brown.

eISBN: 978-0-307-37567-4

1. Brown, Walker. 2. Genetic disorders in children—Patients—Canada—Biography. 3. Genetic disorders in children—Patients—Family relationships—Canada. 4. Parents of children with disabilities—Canada—Biography. I. Title.

RB155.5.B76 2009        362.196′042        C2008-901665-3

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