Ashley Bristowe - My Own Blood
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- Book:My Own Blood
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- Publisher:Random House of Canada
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- Year:2021
- Rating:4 / 5
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When their second child, Alexander, is diagnosed with a rare genetic disorder, doctors tell Ashley Bristowe and her husband that the boy wont walk, or even talkthat he is profoundly disabled. Stunned and reeling, Ashley researches a disorder so new its just been namedKleefstra Syndromeand she finds little hope and a maze of obstacles. Then she comes across the US-based Institutes, which have been working to improve the lives of brain-injured children for decades. Recruiting volunteers, organizing therapy, juggling a million tests and appointments, even fundraising as the family falls deep into debt, Ashley devotes years of 24/7 effort to running an impossibly rigorous diet and therapy programme for their son with the hope of saving his life, and her own. The ending is happy: he will never be a normal boy, but Alexander talks, he walks, he swims, he plays the piano (badly) and he goes to school.
This victory isnt clean and its far from pretty; the personal toll on Ashley is devastating. It takes a village, people say, but too much of their village is uncomfortable with her sons difference, the therapy regimens demands and the familys bottomless need. The health and provincial services bureaucracy set them a maddening set of hoops to jump through, showing how disabled children and their families languish because of criminally low expectations about what can be done to help.
My Own Blood is an uplifting story, but it never shies away from the devastating impact of a baby that science couldnt predict and medicine couldnt help. Its the story of a woman who lost everything shed once beena professional, an optimist, a joker, a capable adultin sacrifice to her son. An honest account of a womans life turned upside down.
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I was completely swept away by Ashley Bristowes book. For three days I could do nothing but read it. I felt totally immersed in her life, her struggles, and her thoughts. She writes about her sons early years, not retrospectively, but in the midst of the experience, ongoingly, from that high-stakes perspective where nothing is resolved. I dont think I will ever forget my encounter with her frankness, her devotion, her lostness, her immersion in the extremes of life, or her propulsive and urgent writing.
Sheila Heti, author of Motherhood
Most books about raising children with serious disabilities aim for optimism, and sound exactly alike. But once in a while, a gifted writer produces a brutally honest and utterly readable account of that dark, detailed, furious, unseen world, after which you cant see ordinary life the same way again. Its a rare gift, but Ashley Bristowes My Own Blood is that kind of book. You need to read it, as soon as possible.
Ian Brown, author of The Boy in the Moon
This memoir is as unputdownable as the best thriller. Really, I was awake until 3 a.m. reading this true story of a sharp-witted, foul-mouthed mother losing her mind as she saves (and utterly transforms) her severely disabled sons life. Ashley Bristowe meets our collective silence about disability head-on and speaks, cries, sings and laughs in its (our) face. This is not a tidy depiction of singular heroism. Its shockingly real, painful, hilarious, and, at times, terrifying. Over and over again, she shows how we, too, each of us, can and must summon the political will and the moral courage to respect, to love and to share our power with the most vulnerable people among us. An extraordinary testament to human connection. And swearing.
Karen Connelly, author of Burmese Lessons and The Lizard Cage
My Own Blood is a look-you-in-the-eye conversation about motherhoodthe glory and the wretchedness. Ashley Bristowe tells her remarkable story with ferocious candour and hard-won insights into how we regard disability and parents who grapple with its challenges. A wonderful book, just bursting at the seams with bravery, honesty and heart. My own heart beat faster as I read it.
Gillian Deacon, broadcaster and author
Written with spare, feisty, sparkling prose, My Own Blood places the reader squarely inside a human experience few could imagine but many must endureraising a special-needs child amidst a society far less caring than we pretend to ourselves. A gripping and defiant memoir of parental commitment, distress, struggle and vindication.
Gabor Mat, MD, author of When the Body Says No
My Own Blood is like the clearest window pane, through which we have the privilege to observe, absorb, the extraordinary journey of love between a mother and her very special child, and also view the price she, and all of us, pay for freedom, perseverance, hope and fulfillment. A stunner of a memoir in which each sentence either sings or stings.
Deepa Mehta, filmmaker
PUBLISHED BY RANDOM HOUSE CANADA
Copyright 2021 Ashley Bristowe
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 2021 by Random House Canada, a division of Penguin Random House Canada Limited, Toronto. Distributed in Canada by Penguin Random House Canada Limited, Toronto.
www.penguinrandomhouse.ca
Random House Canada and colophon are registered trademarks.
Library and Archives Canada Cataloguing in Publication
Title: My own blood : a memoir of madness and special-needs parenting / Ashley Bristowe.
Names: Bristowe, Ashley, author.
Identifiers: Canadiana (print) 20190159294 | Canadiana (ebook) 20190159367 | ISBN 9780735278165 (hardcover) | ISBN 9780735278172 (EPUB)
Subjects: LCSH: Bristowe, Ashley. | LCSH: Bristowe, AshleyFamily. | LCSH: Mothers of children with disabilitiesCanadaBiography. | LCSH: Parents of children with disabilitiesCanadaBiography. | LCSH: Children with disabilitiesServices forCanada. | LCSH: Children with disabilitiesServices forUnited States. | LCSH: Children with disabilitiesFamily. | LCSH: Children with disabilitiesCare.
Classification: LCC HQ759.913 .B75 2021 | DDC 362.4/043dc23
Text design: Kelly Hill
Cover design: Kelly Hill
Cover credits: (paint) mustafahacalaki / DigitalVision Vectors / Getty Images
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For the Ashley who walked into the January darkness with nowhere to go but the river
For mothers fresh out of the genetics appointment, headed the same way
And for Turner, Sloane, and Alexander
Youre my favourites
You have my blood in you.
My blood is in you.
alec horbow (october 3, 1919 january 11, 2009)
This is the story I told myself about what happened. Not because it is a good or inspiring story, although in some ways it is. And not because it is a true story, even though its mostly true.
This is the involuntary storyless grateful, hard-won wisdom than wounded, cornered bird-think. I scuttled through the years described here down a thin straw of windpipe. Nobody wants to nearly lose their mind, for months and months and years. It was unbearable at the time, and if Ive written it right, it will be achy to read. This time wasnt fun, but we made parts of it funny, because without dark humour and authentic laughter we never could have kept on.
Anyone who claims that our society cares about people with special needs, families in crisis, mothers in general, or the exigencies of working parents can suck my strap-on. Individuals care, when theres an inescapable or financial reason that makes it impossible not to. But society at large cares not a lick. I didnt really know this before 2009. Call Past-Me an optimist. Current me isnt as naive.
I didnt come through this experience better or stronger or grateful for it (though maybe I did). I used everything I had in me, and I couldnt do it again (though maybe I could). Every moment I wasnt doing something pointed and specific and physical, I had fantasies of escape. Or was wracked with self-pity. Or fell into suicidal ideation.
I dont remember everything perfectly (who does?), and Ive described some events here in a different order than they unfolded in real life, for clarity and flow. However, many of the conversations were transcribed verbatim soon after they happened (I am a journaller, and a fast typer). So everything in the story is basically true, except the parts I imagined, which felt true when I was in their grip.
If youre the sort who gets itchy when women swear or threaten casual violence for emphasis, parts of this story will make you uncomfortable. If, at those moments, you pretend Im the
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