Perhaps I hadn’t yet had the mental space to process the fact that someone new would soon be taking charge of Voiceless or maybe, hopefully, I was finding contentment in putting together my new life puzzle.
‘No, they have a rare genetic disorder,’ I said to my plane companion as I wrapped my fingers around the soft skin of Lev’s ribcage under his shirt. He squealed as I made a beeline across his soft pale skin for his ticklish spot.
She smiled at him again.
‘What’s the prognosis?’ she asked.
Why do people ask this question? I wondered. A few weeks before I’d been asked the same question by an animal advocate visiting from the UK. I had mentioned my boys, deciding to decompartmentalise my personal and professional worlds. Big mistake.
‘What is their expected life span?’ my colleague had asked across the vegan antipasto platter. Seriously, she hardly knows me, I’d thought, forcing a deep breath. I was full of hope for their lives, with no desire to contemplate their deaths. What mother would?
‘Their life span is normal as far as I know . . .’ I said with gritted teeth before changing the subject.
In truth I didn’t know. I hadn’t read any of the medical papers and had never asked Dror or my father what they knew about their life expectancy. I never planned to.
‘. . . Despite them being happy handsome boys,’ my plane companion finished the sentence after the ‘prognosis’ question had hung uncomfortably over our heads for a brief moment. She stroked Lev’s hand. I liked her again.
‘Nobody knows, but they’re slowly progressing, so that’s great,’ I said, reassuring both of us.
Progression. I thought about all the therapy we’d done, the snail’s pace of development, years of desperation, missed milestones and failed therapy goals. My voracious guilt about never doing enough had faded a little and I’d become more philosophical about their therapies. I loved our team of therapists: Debbie, Prue, Terry and Debbie B. What amazing women. And yes, therapy was important, and I was glad to have more time to participate in the boys’ sessions. But as, or more, important was love and family, and normal childhood joys like playing in the bath, cuddles and tickles, ice cream and Sesame Street. Their life, my life, couldn’t only be about therapy.
‘Mummy . . . Muuuummmmy!’ Jasmine called out loudly from the other side of the plane. She had her headset on and couldn’t hear how loudly she was speaking.
‘What, Jasminnie?’ I asked.
She held something up in her hand and smiled, revealing a dark spot in her mouth.
‘Your tooth! Yay! You lost your tooth! Come here!’
She took off her earphones, unbuckled her seatbelt, squeezed past Dov sitting on Dror’s lap and Rachel tidying the nappy bag, and across to me.
‘Well, you know what that means?’ I said to her with a cheeky smile.
She jumped up and down on the spot, beyond excited. My heart felt like it was bursting. First tooth! ‘The tooth fairy?’ She knew too well.
‘How will she find us in LA?’ I said, contorting my face into a troubled frown.
‘I don’t know,’ said Jasmine. ‘Fly?’
When Jasmine returned to her seat I unwrapped the top of a chocolate bar for Lev. I positioned it in his right, his better hand, just as Prue had told me to, and brought his fingers to his mouth. Dov and Lev were getting much better at feeding themselves, often eating entire pieces of broccoli or toast without help. They just needed a physical trigger to get them going. The chocolate was square, so much harder to hold than something long and rectangular. But Lev started sucking and was soon painted brown.
The woman looked up from her book and smiled at us again.
‘Life’s good,’ I said, referring to Lev’s grinning face and the blissful state of any child sitting on his mother’s lap, covered in chocolate.
By the way she looked at me, a flash of confusion in her eyes, I realised she had misunderstood me, thought I meant that my life was good. Clearly she found that hard to believe. Should I explain myself ? I thought for a moment.
For so long I’d thought Dov and Lev’s disabilities would become my entire life, my future identity. If they didn’t get better, life would be a perpetual state of despair, grief and resentment for what I had lost.
But what if I could see it as just one small piece of the puzzle? A single page in a rich narrative?
Our future with disability, the double wheelchairs and adult diapers, was ominous and full of trepidation. But here I was, seemingly happy.
Preschool sons who could not say a word and struggled to lift their chests off the floor. Who’d just had their fourth birthday and couldn’t purse their lips or control their breath well enough to blow out their candles. Who couldn’t play musical chairs or pass the parcel. Who were still in nappies, with few prospects of toilet-training. Who had never been invited to anyone’s place for a play date. Who might never . . . The list was too long.
But here I was, right here, right now, better than okay. So when I imagined the future and a time of wheelchair-friendly cars and mechanical hoists to move heavy bodies, perhaps I would be all right then as well.
I came back to my favourite analogy: the puzzle. Those scattered pieces were slowly being put together again. Forming a new picture.
The picture showed me, Dror, Jasmine, Dov and Lev in the centre. We had always fitted perfectly. My brother and parents were still firmly attached. To our right I had my still desperate hope. But this was no longer a white-knuckled-clinging-to-a-cliff desperation. Just a calm tenacious desperation, if that’s possible. To my left I had the gratitude puzzle piece, hugely helpful in all aspects of my life.
My role in Voiceless? Should we have more children? Was a special school the right choice? These pieces were sitting to the side, waiting to see if they would fit.
The foundation piece was patience. I didn’t need to know everything right now; sometimes time untangled our knotted heads and glued together our broken hearts.
Faith fitted neatly into patience. The kind of faith that didn’t necessarily need a guru, bearded rabbi or organised religion, but one that, despite the waves of terrifying fear that I knew would always be with me, held to a belief in a deeper meaning. Like a surfer gripping her board in high waves, I can look out to the calm horizon and up at the crimson sky and see the beauty of nature despite its power to destroy.
The plane jolted and I glanced across at the woman again. No. I wouldn’t explain myself. Despite what she might have thought, it was true, life was good. Certainly not perfect, but nevertheless. Row 24 of Qantas flight 11 was full of love, life and hope, and that looked like a pretty good picture to me.
EPILOGUE
I’m writing this final note sitting in a café in Israel.
Dror’s soulful connection with the land of Israel hasn’t faded, so we moved back here four months ago. I have convinced myself I can manage, even thrive on the challenge. My parents were initially devastated that we were leaving, but they respect Dror’s passion and have already visited us here and promise to continue to do so. Dror and I both want Jasmine to reconnect with Israel’s culture and language so they become a part of her too.
This morning, like most days, Dov, Lev and Jasmine left for school. My house feels deliciously quiet these days. But over the last three years since I started this book I have become accustomed to writing amid the bustle and noise of cafés, and so here I am again, sitting with my laptop to write while I nurse a soy latte.
It has been over three years since we took that first trip to Panama. Dov and Lev are now six and Jasmine, eight.
In truth, I could have written another book about the intervening years; there has been no lack of dramatic, traumatic events or emotional upheavals. I suspect that this will continue as Dov and Lev grow.
So, now for an update.
Firstly, Voiceless. We are continuing to have an impact and I am still actively involved on a strategic level, as well as in the judging of our grants, prizes and awards. Our las
t awards event saw Her Excellency Professor Marie Bashir, Governor of New South Wales, speak eloquently about animal protection, and Voiceless’s new patron, the highly respected former high court judge, Michael Kirby, give the keynote address. So the cruelties of factory farming are slowly being acknowledged by the highest echelons of Australian society. Voiceless announced the winners of our new literary prize—having their work published in an anthology of Australian writing on animals that I had the honour to edit with J.M. Coetzee, Susan Wyndham and Wendy Were. Most importantly, the room was packed with advocates, lawyers, artists, journalists and corporates, all passionate about stopping animal suffering.
And now Dov and Lev. How much I would like to report to you, my reader, a miraculous recovery. How much I wanted that, I can’t even describe. When I started writing this book, I didn’t know what the ending would be. I hoped that by the time I wrote the final chapter it would be a happy ending worthy of a Hollywood movie. Walking. Talking. I could see it all, with a soundtrack to boot. But no. It has been more like a French film: a complex, unfinished ending that leaves viewers philosophising about life over a cigarette and espresso at midnight.
After Panama several of the therapists, as well as Dror and I, believed there was a slight improvement in Dov and Lev’s cognitive processing, enough to encourage us to return the following year. We are planning another trip soon. Dror and my father are also continuing to pursue other medical research, but there are no concrete outcomes yet.
At present Dov and Lev are not talking and their lips and tongues still struggle to form consonants. No, they can’t sit independently, roll or even crawl. The dreaded ‘W’ word has slowly entered our lives. Dror and I are now ruminating on which wheelchairs to buy. But nowadays Dov and Lev are always ON, not OFF. Their batteries don’t run out and their response times are faster than ever. They are a little better at building towers of blocks (albeit with one hand), bringing their hands together, sitting upright, standing (with support), walking in the walkers and feeding themselves. They aren’t so wild about Elmo any more. Dov loves airplanes, trucks, cars and buses, and Lev loves musical instruments and stars. They are both fond of giraffes and smitten with our new rescue kitten, Rosie. Tigger, now fifteen, still licks Lev before bed.
Dov and Lev are both at a special-needs school. The school system in Israel, as we had hoped, is significantly better than we experienced in Australia. We tried Dov and Lev at the school in Sydney, but no, it was not a good outcome and we decided to take them out after five days. No doubt the staff were lovely and tried their hardest, but the system itself is inherently badly designed and grossly underfunded.
The school here is in the public system but much better equipped. It is designed specifically for children with physical disabilities and, in contrast to Australia, they have equipment on hand—walkers, bicycles, standers—as well as in-house physio and speech therapists who see the children twice a week, and even a doctor and counsellor. The school buildings and playground are fully accessible and the staff to children ratio is higher—two to one—than in Australia.
The government in Israel has the kind of national disability insurance that Australia is now planning to trial. Here families like us are given funding for accessible vehicles as well as full-time live-in help. I hope Australia, my beloved home country, will soon learn that this is what families need to survive. Australian mothers of school-aged disabled children, I recently read in a report from Monash University, have significantly reduced rates of mental health compared to the rest of the population. With the lack of services or respite on offer, it’s not surprising.
In Sydney, after we’d realised the special school wasn’t going to be a success, we employed a home-school teacher with a degree in speech therapy to work with them every day as they practised communicating with their picture symbols. Dov and Lev made exciting inroads and can now not only answer questions like ‘Do you want to eat or drink?’ but also construct longer thoughts. For example, Dov can navigate through five pages of his PODD book (a picture symbol system), pointing to various symbols in order to move from the ‘categories’ page to ‘transport’ and finally to ‘train’. I give him his red toy train and he smiles with delight.
Because we still believe the DITPA is giving their brains a chance to regenerate, we aren’t satisfied with a school program alone. Boot camp continues in the afternoons with extra speech therapy as well as occupational and hydrotherapy.
The miracle I so longed for hasn’t arrived. If I brush away the tears and look closer, however, I can see just how miraculous my life is, and how full of love. Dov and Lev are the sweetest, most amazing children, and I feel fortunate and honoured to be their mother. Equally as gorgeous is Jasmine, who is now sprouting like one of my Gran’s mung beans into an even more gracious child. I am also full of gratitude for Dror, who is without a doubt my soulmate. We are able to face each other again after so many years of fighting, shoulder to shoulder, against the faceless enemy.
I have stopped praying for Dov and Lev to be ‘normal’.
Is wanting our children to be normal, to reach all the usual milestones, written into our DNA? Certainly we expect it, celebrate it, and if it doesn’t come, it feels plain wrong. Our society, of course, is mostly full of ‘normal’ people giving birth to ‘normal’ babies who grow and develop ‘normally’. A large part of life as a parent is comparing notes with those around us, sharing stories of our children’s milestones. When you have children who aren’t reaching those milestones, it feels lonely. Everyone around you is in the Normal Club, understandably full of pride at their children’s achievements, and there you are, watching through the window, without a membership card.
So I am letting go of ‘normal’. As much as I can. Rather, I ask for strength. And faith in a greater plan. And gratitude; there is so very much to be grateful for.
Jasmine is happily settled into her new school. Her Hebrew, unlike mine, is quickly progressing. She continues to do ballet and now has a passionate love affair with books. Dror is planning to get involved with regional conservation issues and toying with the idea of a side career in politics. I plan to continue writing and practising my unique form of inflexible yoga.
I am putting my puzzle back together and it’s looking promising. Funnily enough, through all my inner turmoil I have discovered increased joy and a freedom previously unknown to me. I am discovering me. A me that is still hurting, yes, but growing in the knowledge that I will be okay no matter what life throws at me. I never want to return to zombie Ondine. To be disconnected, fake. I want to be able to weep at the disappointments and then to laugh in delight at the joys of my life; I want to live an authentic life.
ACKNOWLEDGMENTS
Firstly I want to note that this story is but a thin slice of my life, focusing on a three-year period. It is one of a thousand stories, and accounts for a very small part of my childhood, adolescence, family relationships and friendships. It doesn’t describe, for example, the many great times I’ve shared with friends; it barely touches on my experience of mothering my beautiful Jasmine; and it reflects little on the complexities of my relationships with my mother, father, brother or husband.
I want to acknowledge the many other perspectives that ran concurrently to mine during this period. Dror’s experience with Dov and Lev, his journey of grief, was very different, as were my mother’s, father’s and brother’s.This difference is common when tragedy strikes. It is one of the key factors that contribute to the feeling of isolation. In light of this, I feel remarkably blessed that my marriage, family and friendships have not only survived but become stronger. I believe that many in similar situations don’t fare as well.
I want to thank my family and closest friends for giving me permission to write this story, especially as I sometimes portray them in a less than flattering light. They are very courageous and I am humbled and touched.
This book is dedicated to the loves of my life—Dror, Jasmine, Dov and Lev.
My sou
lmate, Dror, I can’t imagine having been on this journey with anyone else by my side. I love, respect and admire you greatly. You are a wonderful father and husband. Thanks for reading the many incarnations of this book and responding with such sensitivity.
Jasmine, one day when you are older you will read this book. I hope it will help you to understand me even better. This book tracks my journey with Dov and Lev but I could have written a hundred about you alone. You are a uniquely special person, with a remarkable imagination, creativity and wisdom beyond your years. In short, you are just the most amazingly wonderful daughter a mother could ask for. Always know that I love and adore you.
Dov and Lev, I love you so very much. You are both perfect and I am so lucky to have you in my life. I hope and pray that one day you, too, will be able to read this book. Know that I will never give up on you.
Dad, I am so lucky to have you as my father. You are a most remarkable, loving and compassionate man and an inspiration to me and so many others. Thank you for helping Dov and Lev; my gratitude is truly beyond words.
To my mother, Gene. You have been such an enormous influence in my life, and have always, always supported my professional and personal endeavours, including this book.You have shown outstanding courage in the last few years and I am full of love and admiration. Thank you, Mum.
Emile, you’re the best brother. Caroline and my beloved nephews Milo, Zachy and Cy, as well as Anita and Ayalla Ben-Ami and Corelle, Elad, Eliav, Sharon, the whole Sherman family; Lynn Freedman, Mia and all the wonderful Freedmans; Lynne, Viv and the whole Shore family; the Vogelman, Bar-Sela, Rechtshaid and Arieh families—love you all. Yaakov, you are dearly missed. Gran (Minnie), you are always in my heart.
Karen Workman, none of this would have been possible without you. Thank you.
Thank you to my agent, Sophie Hamley at Cameron Creswell for believing in me, Melanie Ostell at Murdoch Books for first taking a chance on my manuscript, and Louise Thurtell at Allen & Unwin and Julia Stiles for your support and sensitivity. Thanks to the whole Allen & Unwin team, including Sarah Baker and Amy Milne.
The Miracle of Love Page 26