The Miracle of Love

by Ondine Sherman

  The miracle

  of LOVE

  ONDINE SHERMAN

  First published in 2013

  Copyright © Ondine Sherman 2013

  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

  Email: info@allenandunwin.com

  Web: www.allenandunwin.com

  Cataloguing-in-Publication details are available

  from the National Library of Australia

  www.trove.nla.gov.au

  ISBN 978 1 74331 620 7

  eISBN 978 1 74343 461 1

  Set in 12.5/16.5 pt Bembo by Post Pre-press Group, Australia

  Note: Some names have been changed and some characters merged or divided to protect people’s privacy.

  For Dror

  The point is not what we expect from life,

  but rather what life expects from us.

  Viktor E. Frankl

  Contents

  FOREWORD

  AUTHOR’S NOTE

  PROLOGUE

  ONE

  TWO

  THREE

  FOUR

  FIVE

  SIX

  SEVEN

  EIGHT

  NINE

  TEN

  ELEVEN

  TWELVE

  THIRTEEN

  FOURTEEN

  FIFTEEN

  SIXTEEN

  SEVENTEEN

  EIGHTEEN

  NINETEEN

  TWENTY

  TWENTY-ONE

  TWENTY-TWO

  TWENTY-THREE

  TWENTY-FOUR

  TWENTY-FIVE

  TWENTY-SIX

  TWENTY-SEVEN

  TWENTY-EIGHT

  TWENTY-NINE

  THIRTY

  THIRTY-ONE

  EPILOGUE

  ACKNOWLEDGMENTS

  BIBLIOGRAPHY

  Foreword

  When your life swerves off its expected course without warning, you can be left highly disoriented. Reeling. All perspective and sense of certainty can vanish. But when you have children there’s no time to stop and recalibrate. No time to stop the world so you can pat yourself down after the explosion and check that everything’s intact. The daily demands of a young family wait for nobody.

  When Ondine Sherman and her husband Dror Ben-Ami were faced with the news that their twin sons, Dov and Lev, had a rare genetic condition that would drastically impair their future development, nothing stopped. They still had the minute-by-minute chaos of life with small children, made even more complicated for Ondine by living in a foreign country where she didn’t speak the language.

  And yet in other ways, everything stopped. Their life as they knew it was snuffed out in a series of medical appointments. And as they were drip-fed information about their sons’ diagnosis and prognosis, they had to navigate a strange kind of ongoing tragedy, dealing with everyone else’s reactions on top of their own.

  We’re terrible at dealing with such things in Western culture. We have few rituals for grief or loss or reflection. We prefer to celebrate happy occasions, like births and engagements, job promotions, anniversaries and birthdays.

  The language of good news is embedded into our small talk and peppered through our conversations. But when bad things happen, we freeze. We stumble. We slink away. We stay silent when we should say something, anything. We lean back when we should lean forward; when we should reach out and allow unspoken fear and grief and uncertainty to bubble to the surface. We should ask and we should listen, even if it’s sometimes uncomfortable. More than meals, more than flowers, that is our gift to give.

  I’ve known Ondine all my life. As cousins we grew up together, and when our fathers partnered up in business our families became further entwined. But I never knew her, and it turns out I wasn’t the only one. I sat down to read this book and I didn’t get up again for hours. I couldn’t. I feel like I know Ondine now. I also feel like I know Dov and Lev, who are my cousins too. Instead of seeing what they can’t do, Ondine has painted a detailed picture of what they can. And even more importantly, who they are.

  In writing about what it’s like to have your world implode around you and to have to pick up the pieces and reassemble them into a new kind of normal, Ondine has given a gift to anyone who has had their life change unexpectedly. She’s also given a gift to everyone who has watched from the sidelines, wondering how on earth to help.

  I am in awe.

  Mia Freedman

  Author’s note

  This book doesn’t do justice to the many people who, during the period I write about, stood beside me. I know that many of them prayed for my boys, offered help and support and tried their best to reach out.They will learn a lot about me in this book, perhaps be shocked, and I am sorry that what I have been able to share here, in writing, I was not able to share in person.

  My journey was characterised by a distinct feeling of aloneness. This was my struggle and mine alone. Dror, my mother, father, brother and many others close to me are on their own paths from grief to acceptance. My feelings of isolation weren’t necessarily all negative, and in some strange way I appreciated the existential crisis, the depth and darkness I discovered within myself. Once found, I guarded this knowledge of my innermost world with ferocity.

  Many have asked me why I would want to publish this book, given I seem like such a painfully private person. Why would I want to share my most personal feelings and intimate struggles, ones I would normally have painstakingly attempted to hide? I have reflected deeply on this question and can think of three reasons.

  Firstly, simply writing my experiences, discovering my written voice and slowly crafting my sentences, paragraphs, pages and chapters gave me strength. The kind I wasn’t able to find through talking to others in person. Writing focused the chaos in my head and, quite remarkably, helped me come to peace with the uncertainty of the future.

  Secondly, I believe I have an ethical obligation to share my story. Disability is one of the last remaining taboos in our society. In the face of it, people seem lost for words: awkward, silent, apologetic. For too long families with special-needs children have also had to hide themselves, for fear of judgment. Officials talk about a philosophy of ‘inclusion’ but it is rarely seen on our streets or in our playgrounds, restaurants, libraries, shops or schools. If I can say anything to other families going through what we have, it is this: there is nothing to be ashamed of. My boys, like your children, are beautiful, perfect souls.They have every right to be a part of our community and, not only that, we are all so very lucky to have them.

  Lastly, and most importantly, I humbly hope that my journey will help others facing hardships of their own. I strive, like many women, to be a good mother, wife, daughter, sister and friend, as well as a healthy person, strong, wise, loving, compassionate and full of joy. I know that reading other people’s stories gave me courage and helped me to feel part of a bigger picture. By sharing my story, I wish to do the same.

  A portion of the proceeds from the sale of this book will go to two organisations: Children with a Disability Australia (CDA) and
SMILE. CDA (www.cda.org.au) is the national peak body that represents children and young people (aged 0–25) with disabilities and their families. The SMILE Foundation (www.smilefoundation.com.au) is a national charity that works to improve the quality of life of children with rare diseases or conditions.

  PROLOGUE

  ‘Our grief counsellor told us . . .’ Our friend Bill paused. ‘When something tragic happens in your life . . .’ Again he stopped and looked at his wife Maria. He cleared his throat. ‘It can be described like this.’ Behind his glasses, his eyes were wet.

  Trying to shut out the laughter coming from the table next to us, I leaned forward and put my hands to my ears like my grandmother used to do.

  It was a Saturday night at a busy tapas bar.The four of us had wandered the streets of Bondi, a warm spring wind unwinding our scarves, faces long with unspoken sadness. Hungry, I had spotted a table at the back of the bar. But we were way out of our league. Über-trendy twenty-year-olds surrounded us: boys in skater T-shirts and skinny pre-faded jeans, a few days of growth patchworking their chins and upper lips. Heads were sprinkled with felt hats, crocheted beanies and French berets. The girls wore their hair long and intentionally unstyled, soft dark organic-cotton tops unbuttoned to show lacy bras.

  I sat next to Maria. I didn’t know her well yet I was eager to speak my heart without fear. She had just lost a baby. Forty weeks. She knew the texture and taste of suffering, just like me. My three children were alive, yes, but my twin boys, my beautiful soft-skinned sweet boys, at age three still flopped like puppets, unable to talk or walk. Just as the evil doctor had predicted.

  If you looked closely, you could see it in Maria’s face: insomnia-bloated eyelids purple with blood vessels. I was a better actress. Dror sat opposite and we smiled weakly at each other, uncertain what the evening’s conversation might reveal.

  ‘Go on,’ I said to Bill.

  ‘Well . . . it’s like you’re doing a complex puzzle and a thousand pieces are laid out on your table. Painstakingly you’ve completed half the picture and you’re slowly fitting more parts together, one by one.

  ‘The puzzle is your life, yeah?’ Bill explained, just to be sure we understood. ‘Someone, or maybe something, comes along and suddenly . . .’ His right arm swept across the table. I grabbed my water glass just in time. He didn’t notice.

  ‘. . . your table is turned over. All the pieces scattered on the floor.

  ‘You realise,’ he continued over the noise, ‘that, try as you might, the pieces don’t fit together any more. The picture has changed and you no longer know what it is.’

  I sat quietly as our food was served, twisting the white paper napkin on my lap. The waiter was good-looking in a blond, tousled surfer way. He smiled at me as he put the plate down. Surely it was pity. I felt a hundred years old. Old and tired. Sad and worn.

  Hadn’t my puzzle been perfect? I thought. My throat constricted as if a golf ball were lodged inside. How I’d loved my puzzle and its beautiful picture: children, love, friends, animals, accomplishment, travel, money, freedom. I missed it. Why had it been destroyed? Who had sent this rare disease to ravage my life, our lives?

  My puzzle had been made up of good solid pieces; parts that were worthy, making a difference and contributing to society. It seemed unfair. Nevertheless I knew Bill was right: the pieces no longer fitted. I had tried to put them back together. But that perfect life was over. Broken.

  ONE

  ‘Ondine? Ondine!’ My grandmother’s deep raspy voice jolted me out of my daydream. I put the Beatrix Potter book down on my lime-green bedcover, leaving it open at my favourite illustration of Flopsy, Mopsy and Cottontail.

  I’d been fantasising myself into the picture, happily feeding a small rabbit amidst the strawberry patch. I’d caressed its soft fur with my hands, fingernails muddy from working the garden, digging carrots and picking flowers from the overhanging trees. The spoils of my labour lay in my wicker basket.

  ‘Coming, Gran!’ I shouted, swinging my legs off the bed where I’d been lying next to my dog, Bronnie, a Cavalier King Charles spaniel. She was brown and white with a small black nose and long shaggy ears that I brushed free of knots. One day I, too, would live in the countryside, I promised myself; not under the root of a big tree like Peter Rabbit, although that sounded quite lovely, but in a house made of mudbrick, covered with pink climbing roses.

  I ran down the spiral steps, Bronnie following close behind, through the hallway and into the granny flat that adjoined our old Sydney terrace. The house was large but it had been a good bargain. ‘Can hardly hear the noise of the six-lane overpass outside,’ my parents had told their friends.

  Mum had sold her father Eric’s gold watch to pay for the new staircase and he had paid for the house deposit with the last of his money. Eric had only recently arrived from South Africa and was living in the hospice across the road. That was why we had bought the house the previous year, so Mum could see him every day. There was little time left as he was slowly fading away from Gaucher’s and Parkinson’s diseases.

  We had emigrated five years earlier. Life in South Africa had been good to whites: Jewish communities were blessed with prosperity and peace while blacks were beaten, humiliated and denied basic rights. Emigration and forfeit of citizenship was my parents’ way of quietly protesting the apartheid regime; noisy dissenters were found and jailed. Eric’s family had originated from Austria, and my mother’s mother from Lithuania. My father’s whole family, including Gran, also came from Lithuania. They had boarded ships to South Africa, escaping persecution and pogroms, not realising at the time just how lucky they were. Relatives and friends wouldn’t fare so well. Later, the Nazis and local Lithuanian collaborators murdered ninety-six percent of the Jewish population.

  My dad grew up in Brakpan, a small gold-mining town. Cows walked down the main street and his dog followed him across fields to wait outside his school gate. Dad ate raw sugarcane as a treat, and whole peanuts, including the shells, which the pet shop sold for pigs. His older brother Ron stuffed itchy powder from the local trees under Dad’s shirt. Their father Hymie ran the local general store; my gran helped out and Dad worked there too after school. There was never much money. Dad went into the army, compulsory for all South African men, and then on to university and a Bachelor of Commerce.

  Mum and Dad met over a game of tennis. Mum had grown up in Johannesburg and was from a socioeconomic bracket above Dad’s. Eric had been a successful businessman until he’d lost it all on the stock market. When Mum married Dad, Eric shook his head sadly and said, ‘Genie, he may be creative, smart . . . but he’s undisciplined and will never amount to anything, can you live with that?’

  My mother saw herself as a global citizen long before the concept gained popularity. Her mother, Micky, was a housewife, and although she was quiet and demure she was steely in her efforts to right wrongs in South Africa; not on the larger political front, but in small ways, performing acts of kindness that my mother witnessed in daily life. Eric was the same, philosophical and idealistic, determined in his belief that humanity needed to unite, despite colour, race and religion, and that the adoption of one universal language, Esperanto, could bring lasting peace to the world. In fact, despite his sister marrying a rabbi, Eric strongly believed that organised religion was the reason for all ills in the world.

  My brother, Emile, and I were brought up with strict moral values such as giving to charity and standing up for human rights. Although my parents were Jewish, these ethics, they argued, were not constructed by organised religion, which they distrusted, but formed by their belief in the responsibilities of humanity. Although we celebrated a few of the major Jewish holidays with our extended family, my parents agreed with Karl Marx that religion was ‘the opiate of the masses’. They rather believed in Sartre’s philosophy of existentialism, that human existence happened by chance and it was our responsibility to make it worthwhile.They explained to me that my life was a blank sheet of paper. I cou
ld write on it whatever I wanted. It was up to me.

  My parents left behind a big, rambling, comfortable home and good jobs and flew out with only five thousand dollars in their pockets, as South African policy dictated no assets could be taken out of the country. Emile was four years old when we emigrated to Australia, and I was just under two. Gran, my father’s mother, sixty-five and a widow, moved with us into a narrow terrace and we all lived together.

  Dad had left his job at a Sydney bank and was working like crazy to get his own business going with my mum’s first cousin, Laurence. They ignored all advice from colleagues in the financial markets and were quickly building a company, Equitilink, which would make Australian financial history. Years later, budding business students would study them at university and marvel at their creativity and audacity. In any case, my family’s money struggles would soon become a thing of the past.

  ‘Here, you can eat this in front of the TV,’ Gran said after I’d raced downstairs into her flat. She handed me a glass of cut vegetables. She was a health-food fanatic and we weren’t allowed any sweets, chips, fried food or chocolates in the house. I pulled out a curly capsicum stick and crunched into it hungrily as I sat down next to Emile. I was seven and he had just turned ten. He elbowed me and I moved over a few inches. Our favourite TV show, Get Smart, was about to start.

  ‘Where’s my “Good afternoon, Gran”?’ my grandmother asked, leaning down. Her embossed silver and turquoise locket, filled with musky perfume, jangled over her cream buttoned shirt and large bosom. I kissed her soft, warm, wrinkled cheek. She grabbed my face with big damp hands as her lips smacked my ear.

  An hour later I heard a key. Emile was practising his karate moves in the mirror, and I rushed to the front door.

  ‘Hi, darling,’ Mum said quickly, before catching sight of my yellow schoolbag strewn by the door. ‘Ondine,’ her voice deepened, ‘put your bag away where it’s supposed to go. How many times . . .’ she sighed, hanging it on the hook.