Liza is different. She can’t talk. She can’t walk properly. She’s funny- looking and when she upsets people, which she almost always does, trying to bite or scratch them, we’re told it’s not her fault, that she doesn’t understand. Sometimes I don’t understand either. This is the story of a family, and of Liza, their severely intellectually disabledbig sister. It’s a story about what it was like growing up in a large, chaotic family forever in the thrall of this unknowable, unreachable child. As a child, Cecilia always believed Liza would not survive to adulthood and that she would never be her ‘problem’. But she did survive. With warmth, wisdom and humour, Cecilia reveals how the family came to think of ‘their problem’ as their sister and how, through the passing of time and a mysterious process of acceptance and forgiveness, their fears and resentment turned into fierce loyalty and abiding love. This is more than a memoir about the difficulties, challenges, stresses and rare rewards of caring for a disabled child, it is a story about family. Eloquently told,Always Liza to Meis an uplifting chronicle of how even the most mixed-up of families can teach us great lessons and inspire great love. A L L E N & U N W I N Cover design: Christabella Designs Cover photographs: author's own; front: author and family, with Liza centre; back: Liza. www.allenandunwin.com M E M O I R Pages.indd 1 24/4/09 9:15:34 AM This page intentionally left blank Pages.indd 2 24/4/09 9:15:35 AM Pages.indd 3 24/4/09 9:15:35 AM On page 149, the ‘moment of clarity’ is discussed in Marjorie T. Goodban, Ph.D, ‘Communication Intervention in Cornelia de Lange Syndrome’ at www.cdlsnsa.org/publications/ communication-intervention-in-cdls.html, date accessed 5 February 2009. Extracts on pages 172 and 173 are from a report entitled Western Sydney Developmental Disability Service, Rydalmere Centre, Psychological Report—Ms Elizabeth Rice, dated 27 October 1998 © Department of Ageing, Disability and Home Care (DADHC) on behalf of the State of New South Wales. First published in 2009 Copyright © Cecilia Rice 2009 All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage and retrieval system, without prior permission in writing from the publisher. The Australian Copyright Act 1968 (the Act) allows a maximum of one chapter or 10 per cent of this book, whichever is the greater, to be photocopied by any educational institution for its educational purposes provided that the educational institution (or body that administers it) has given a remuneration notice to Copyright Agency Limited (CAL) under the Act. Allen & Unwin 83 Alexander Street Crows Nest NSW 2065 Australia Phone: (61 2) 8425 0100 Fax: (61 2) 9906 2218 Email: [email protected] Web: www.allenandunwin.com Cataloguing-in-Publication details are available from the National Library of Australia www.librariesaustralia.nla.gov.au ISBN 978 1 74175 167 3 Internal design by Post Pre-press Group, Australia Set in 12/15 pt Fairfield Light by Post Pre-press Group, Australia Printed and bound in Australia by Griffin Press 10 9 8 7 6 5 4 3 2 1 Pages.indd 4 24/4/09 9:15:35 AM To Nettie and Ken Pages.indd 5 24/4/09 9:15:35 AM This page intentionally left blank Pages.indd 6 24/4/09 9:15:35 AM contents 1. veritas 1 2. if 7 3. baby doll 12 4. brotherly love 19 5. departures 29 6. school 38 7. the mountains 46 8. deb 58 9. the outdoors 69 10. leaving childhood 81 11. differences 94 12. freedom 100 13. margaret enquires 110 14. heartbreak 121 15. dreams 128 16. venturing 136 17. heartbeat 148 18. moving on 156 19. the inner corridor 162 20. the unforsaken 170 21. new millennium 180 22. mum’s outing 188 23. happy returns 196 epilogue 200 postscript 202 acknowledgements 203 Pages.indd 7 24/4/09 9:15:35 AM This page intentionally left blank Pages.indd 8 24/4/09 9:15:35 AM Once when I was a little girl I heard bleating from behind a fence. ‘Mummy! Listen, a sheep!’ I cried out in wonder. A sheep! Here near our home, in a yard backing onto a strip of park beside the canal ... My mother’s eyebrows collapsed, her mouth dropped and went soft. I could feel her love reach out to say something, but it didn’t have enough time to hold me and stroke my hair and whisper into my thoughts before her words reached me. ‘It’s not a sheep, darling. It’s a retarded man.’ Suddenly the grass was cold and wet, the fence was looming. My tummy turned sick, my smile hid in the dark place behind my eyes, the sunlight in my hair went slinking away to shadows. I was sad. So sad that in our secret world a sheep wasn’t always just a sheep. I wished I hadn’t heard the bleating, but I couldn’t make my ears go backwards. And then they started playing the sounds from the ward where my sister was kept, where sick people banged their heads and made noises like animals and where my face and arms got scratched and Mummy bled from nail cuts and bite marks. I was ashamed. So ashamed that I had forgotten, when I heard the bleating. Ashamed that I had reminded my mummy of the awful thing that she pretended couldn’t hurt us. We walked on in silence. I tried not to see through the cracks between the palings, but I saw anyway. My mummy saw too: there was a sheep there. And she had turned it into something ugly for her baby. For years I carried that sadness, pushing it deep inside me, trying not to let it frighten me and take the sunshine from my hair again. But it surfaces whenever I’m too weak to keep it away. From the pregnancy journal of Deborah Rice, March 2000 Pages.indd 9 24/4/09 9:15:35 AM