S. Lesley Buxton - One Strong Girl: Surviving the Unimaginable, A Mothers Memoir

One Strong Girl

One Strong Girl

Surviving The Unimaginable:

A Mothers Memoir

S. Lesley Buxton

Pottersfield Press, Lawrencetown Beach, Nova Scotia, Canada

Copyright 2018 S. Lesley Buxton

All rights reserved. No part of this publication may be reproduced or used or stored in any form or by any means graphic, electronic or mechanical, including photocopying or by any information storage or retrieval system without the prior written permission of the publisher. Any requests for photocopying, recording, taping or information storage and retrieval systems shall be directed in writing to the publisher or to Access Copyright, The Canadian Copyright Licensing Agency (www.AccessCopyright.ca). This also applies to classroom use.

Library and Archives Canada Cataloguing in Publication

Buxton, S. Lesley, 1965-, author

One strong girl : surviving the unimaginable : a mothers memoir / S. Lesley Buxton.

Issued in print and electronic formats.

ISBN 978-1-988286-64-8 (softcover).--ISBN 978-1-988286-65-5 (PDF)

1. Buxton, S. Lesley, 1965-. 2. Parents of terminally ill children--Canada--Biography. 3. Mothers and daughters. 4. Buxton Taylor, India. 5. Spinal muscular atrophy--Patients--Canada--Biography. 6. Nervous system--Degeneration--Patients--Canada--Biography.

7. Myoclonus. 8. Terminally ill children--Family relationships. 9. Children--Death. I. Title.

RC365.B89 2018 616.8047092 C2018-903411-4

C2018-903412-2

Cover image: Moorea Hum; Photo: Lesley Buxton

Cover design: Gail LeBlanc from a design by Mark Taylor

eBook: tikaebooks.com

Pottersfield Press gratefully acknowledges the financial support of the Government of Canada through the Canada Book Fund for our publishing activities. We also acknowledge the support of the Canada Council for the Arts and the Province of Nova Scotia which has assisted us to develop and promote our creative industries for the benefit of all Nova Scotians.

Pottersfield Press

248 Leslie Road

East Lawrencetown, Nova Scotia, Canada, B2Z 1T4

Website: www.PottersfieldPress.com

To order, phone 1-800-NIMBUS9 (1-800-646-2879) www.nimbus.ca

Printed in Canada

Pottersfield Press is committed to preserving the environment and the appropriate harvesting of trees and has printed this book on Forest Stewardship Council certified paper.

For Mark and India, my little family

you work,

so hard, all day

To be like other girls.

Joss Hill Whedon

Something To Sing About

Contents

1 Spiriting Away

2 Bridge

3 Motherland

4 A Culture of Illness

5 Home

6 Up in Her Room

7 Stay Gold

8 So Eden Sank

9 Everything at Once

10 Where Are We Now?

11 Refuge

Acknowledgements

Spiriting Away

Kamikakushi ( literally hidden by Kami) means spirited away. In Japanese legend its believed if you chase after a person stolen by the Gods, youll confront the anger of the spirits. Even in modern Japan, when children go missing, they are said to be the victims of Kamikakushi.

Japanese Folklore

The Air Nippon flight from Vancouver to Tokyo is packed. Our fellow passengers are either Japanese Canadians or Japanese tourists returning home. The few passengers of European descent including my husband Mark and me seemed pasty, gawky, and huge in comparison. Over the next sixty days, this is a feeling I will have to get used to. No matter where I go I will feel like a giant, my hands and feet oversized and mannish. Weve been in the air an hour or so. Flying through time into the next day.

The flight attendants slowly make their way down the aisles with the drink carts. They remind me of grown-up versions of the characters in the favourite anime shows of my recently deceased daughter, India, but instead of high school uniforms they wear dark skirts and light blouses with tidy well-pressed aprons. They all seem to wear the same scarlet lipstick. They smile at each other, chatting loudly as they hand out cans of Kirin, Asahi, and the occasional good Scotch. I like the fact my fellow travellers seem to enjoy alcohol as much as I do.

I wonder what India would be drinking if she were with us. She was sixteen when she died so we never got the chance to have a drink together. But I imagine if she were here, I might order her a glass of champagne to toast our trip.

Im on my way to a country that embraces conformity. Already Im uncomfortable with this. It reminds me of all my years at boarding school wearing that dreadful itchy kilt. I never liked matching the other girls. Always tried to bring some individuality to my uniform by wearing bangles or fingerless lace gloves.

India wouldve hated wearing a uniform as well, though like most people whove never done it, she liked the idea of it.

Japan has never been my dream country. I know very little about it other than what my daughter has taught me. I never understood her fascination with it. I cant even remember when her obsession began. Was it that damn Tamagotchi she got when she was seven or eight? Hers was purple. The game was designed so the owner had to care for the Tamagotchi pet, feed it, look after it when it got sick. Indias was always dying. Or maybe she fell in love with the photos my sister, Margaret, showed her from when she lived there, of all the teenage girls in their flowery kimonos tottering down the narrow streets of Kyoto in their white socks and wooden Geta sandals.

When we visited the epilepsy clinic at Sick Kids hospital in Toronto, India always insisted we visit the little Japanese boutique in Kensington Market where they sold the Harajuku fashion. She was so sick then, shaky and constantly on the verge of falling, and so tiny. She wore a size zero. She looked like a doe-eyed anime character. She even acted like one, one moment, placid and smiling, the next losing her temper. Her eyes were so manic I half-expected stars and Xs to shoot from them like one of her favourite characters.

Mark and I would take turns following her through the shop as she admired animal hoodies, Steampunk black corseted dresses, skirts with crinolines, tiny veiled black hats, pastel Lolita dresses with puffy sleeves and aprons. We were afraid of her falling over, which she did frequently and without warning. There were so many accidents over the years. Ive lost count of all her injuries.

India spent hours running the fabric through her fingers like some old European tailor trying to get the most for his money. She always had money too. From her grand-mother or her great-aunt or from the allowance we were always forgetting to give her. Eventually she became friends with the Japanese woman who owned the store. She was so fond of India that shed give us a break and follow her around. Of course, we couldnt relax. Wed sit outside the boutique, waiting nervously for the next disaster.

I pull out my carry-on bag, open it, and slide my hand into a red Chinese embroidered bag about the size of a Crown Royal whiskey bag. It holds the sixteen colourful glass beads, each containing a speck of Indy dust this is what Mark and I have named her cremated remains.

In the end we will leave nine in Japan. Each bead is about the size of a shooting marble, the kind our daughter used to collect when she was in grade three or four. Some are perfectly round, others are doughnut shaped. Mark has strung them on a burgundy velvet ribbon. Im terrified of losing them. The beads are made using a technique called lampworking. The colours are layered, the images made by manipulating glass pipes that look like coloured spaghetti.