Our financial safety net had saved us but many parents of special-needs children struggled, going into heavy debt for equipment and therapies, or suffering exhaustion because they were unable to afford respite. This contributed to higher divorce rates, emotional issues with siblings, or family bankruptcy. Money enabled us to search for Dov and Lev’s diagnosis. Other families had to rely on their local hospital, unable to afford the rounds of specialists or the luxury of time to search for answers.
I knew that even without a diagnosis, early intervention (physiotherapy, occupational therapy, speech therapy, hydrotherapy) was considered a crucial factor in helping children with developmental problems reach their potential. Dov and Lev were doing therapy every day. Other children weren’t so lucky. Public systems were inadequate and most parents couldn’t afford private therapies.They had to provide the therapies themselves, struggling with little training or expertise, investing huge amounts of time, often at the expense of other siblings, marriages and careers. I was immensely grateful to my father for his boundless no-strings-attached generosity that not only enabled us to continue our search for a diagnosis but also provided Dov and Lev with the therapies they so desperately needed, allowing me time to dedicate to Jasmine and even Voiceless. It also gave Dror and me a fighting chance of surviving as a couple.
FOURTEEN
‘I said two years. It’s been over two years,’ I said carefully to Dror one evening. I knew how much he loved Israel, but the extra challenges of living in a non-English-speaking country, away from the systems I could navigate, culture I was used to and people who knew me well, were too much.
‘If Dov and Lev didn’t have issues,’ I said the last word slowly, testing it out. Yes, it was right. Issues. ‘If they didn’t have issues,’ I continued, ‘maybe I would be happy to stay for longer, but it’s just too hard.’
Dror didn’t argue with me. He had been worrying about how I was coping lately. It was clear how much I wanted, needed, to go home to Australia. I told him that I would organise the move so he could focus on finishing his post-doc research as well as chasing up Dov and Lev’s diagnosis.
Scared of offending our new friends, I blamed our decision on Voiceless. And to a certain extent that was true. The people we had met knew me only as a mother. Amid all the stress, I hadn’t succeeded in starting Voiceless Middle East and I was itching to return to some aspect of my old self.
I imagined myself back in our Paddington office, powerful and in control again. Wearing a fitted pant suit and carrying a briefcase, I would confidently scan my security pass at the large wooden gate and enter the building, my heels clip-clopping on the grey slate tiles. I would smile with glossy lips at the receptionist.
‘Morning,’ she would say. Oh, for the sound of an Aussie accent.
Oh, for the sight of the sleek reclaimed wooden desks and flat-screen computers. Oh, for the smell of takeaway coffee, sipped slowly during afternoon meetings when my brain and mouth, in perfect synchronicity, would make articulate arguments.
Getting back to even partly running a dynamic advocacy organisation would do wonders for my body, mind and spirit.
I called my mother, happy to have good news for her.
‘Darling,’ she said, ‘you can’t imagine how happy, how relieved I am. Thank you, darling, thank you. And your father. He’ll be over the moon.You know how he needs you. Not only at Voiceless, but just your presence calms him; it’s not the same for him without you.’
She offered to get our furniture out of storage and help ready the house for our arrival. We had bought the house while we lived in Israel. It had been owned by a colleague of my mother’s, and my parents had arranged a viewing during one of my quick visits for the Voiceless Awards. Yes, I had sighed to myself at the sight of the high vaulted ceilings, wooden floorboards and French doors leading out to a leafy garden. Despite Dror not having seen the house, I had liked it so much that Dad made an offer. I knew how immensely lucky I was to move into a house without not only the financial pressures of a mortgage but also the stress of one or both of us having to work in a high-paying job to bring in a big pay cheque each month. Had Dror been required to work long hours, with a big corporate boss breathing down his neck, I don’t know how we could have managed the many hours, days spent at the hospital seeing doctors and doing tests. As I had gratefully accepted my parents’ seemingly limitless generosity in buying us a house, I now accepted my mother’s offer, knowing it would make our move easier but also hoping that perhaps a practical task like this might help lift her out of the depression.
I also happily emailed my Voiceless team that I’d soon be back at the helm.
Meanwhile, my father kept pestering the head of the US paediatric hospital he had contacted through his friend in Arizona. Weeks had passed with no response but finally the doctor sent a reply. The email, in typical medical style, was a dispassionate two sentences, the second indicating two possible diseases and disorders: the first, Allan-Herndon-Dudley Syndrome (MCT8), and the second involving the duplication of a gene referred to as MeCP2.
We decided to first test for Allan-Herndon-Dudley Syndrome, a genetic disease that Dror told me was a mutation in the MCT8 (Monocarboxylate transporter 8) protein. The MCT8 protein transports thyroxin, which is essential for neuronal development, across the blood–brain barrier. If the MCT8 protein doesn’t carry the thyroxin, or specifically T3 (triiodothyronine), into the brain as it should, the brain doesn’t develop properly.
There were only thirty families in the world known to carry the defective gene. No known cases existed in Israel or Australia. The doctor had never heard of this disease and had had to read up on the sparse literature available.
‘Don’t tell me the details,’ I warned Dror. ‘Just tell me if it’s bad or really bad.’
‘It’s not good,’ Dror said, averting his gaze.‘Actually, it’s terrible.’
Whenever Dror and Dad tried to talk to me about the details, I stopped them. Don’t want to know. It won’t be that. My boys will be okay. Dov and Lev were bright, sensitive, social babies. Didn’t they try to put their hands out, wanting to turn the page whenever I sat reading to them? They had to be okay. I was sure, positive in fact, that Dov and Lev didn’t have Allan-Herndon-Dudley Syndrome. People who had it were severely, permanently, forever and ever, disabled.
We took Dov and Lev back to the red-headed doctor to do the blood test. The blood was to be couriered directly to a Chicago researcher who specialised in this particular disease. It would take several weeks for him to analyse the blood and for us to receive the results. The results would be either positive, meaning they had it, or negative, which of course was what we were all hoping for so desperately.
As we sat in the waiting room to do the blood tests, the doctor walked in.
‘Well, I’m positive that this is it,’ she said, smiling and showing coffee-stained teeth. ‘We’ll have to wait for the results, but from what I’ve read, it’s looking good.’
Good? I thought. This was worst-case scenario. This was my worst nightmare.
Emile heard about the email with the two possible diagnoses and left a message on my phone. Rather than ignoring him, which I did with the majority of my messages these days, I rang him back. For some reason, I didn’t feel beleaguered by the prospect of talking to Emile as I did with other loved ones.
‘It’s ridiculous. It’s not going to be positive,’ I said, hoping for a sound of agreement. ‘I know for sure. It doesn’t even sound like them . . . they aren’t that bad.’
‘Well, you’re being amazing, Ondine,’ he said gently.
It wasn’t the response I was looking for. I wanted him to concur with my opinion.
I sighed.
‘If there’s anything you need . . .’ he continued. We talked for another few minutes.
The conversation had helped to calm me. If there was anything I needed from people, I thought later, it may have been an auto-repeat of ‘It’s going to be OK. You’re doing a good job
. It’s going to be OK.’
We let all our new friends and Dror’s relatives know of our decision to return to Australia, and they seemed to understand. Family is very important to Israelis and Dror’s family felt sure that it would be better for me to be around mine. I filled out reams of Australian citizenship forms, passport documentation, immunisation certificates and dog immigration permits—six months of part-time work for this alone. I cleaned and organised our possessions into piles: stuff to give away, things to sell, items to ship.That all seemed too complicated so I reconsidered, deciding to store rather than ship. I colour-coded stickers and put them on items around the house. I took the dogs for vaccinations, had them stamped and certified by unreliable Israeli government veterinarians who never answered their phones, then filled out sixty pages of Australian Quarantine Inspection forms for Tigger and repeated that for Ketem. What breed of dog did Ketem resemble? Borrowed therapy equipment had to be returned to kind charity organisations. Medical files were translated from Hebrew to English. Efrat had agreed to fly with us and stay for several weeks to help us settle, then find a replacement before she went travelling. She was super-excited about seeing Australia and thanked us repeatedly for the opportunity to come. I was delighted to have her.
I asked my father to find us a case manager, who I was sure must exist for situations like ours, as well as a central therapy centre where we could coordinate all our early-intervention programs. I also wanted him to ask around for good special-needs day-care centres and names of nannies, as Efrat would only be with us for a short time. I wrote him a script of what to say; despite his work with the diagnosis, this was in some strange way more personal for him and he was nervous and unsure about how to describe Dov and Lev and what it was that we needed. When I was talking to him on the phone he called day-care centres ‘facilities’ and nannies ‘nurses’. He told me he had found a nursing agency that might be able to provide us with services. I got frustrated with him. ‘They are not geriatrics; they are little boys,’ I said angrily. But he was having a difficult time: hours on the phone to different government and non-profit agencies, anxiously repeating the same story about his undiagnosed grandchildren who were identical twins and hypotonal, and no, they couldn’t move and couldn’t speak. He was passed from agency to office to department.
In the end he was mostly successful in the difficult job I had unwittingly assigned him, not only making appointments with both a top paediatrician and a physiotherapist for the week after we landed, but also meeting with them himself to provide an overview of Dov and Lev’s condition. Neither case managers nor special-needs day-care centres existed in Sydney, and therapy centres were problematic too, as it seemed only charity organisations provided regular therapies and even then only with long waiting lists and under certain conditions.
Preschool was arranged for Jasmine at the same centre I had gone to as a little girl. Presents were bought for missed birthdays and for my nephews. Farewells were carefully coordinated so no one was left out. I was returning home after two years and three months away. When I flew to Israel, we had an eighteen-month-old daughter. Now we had twin boys of eighteen months and our daughter was nearly four. I had also lost a dog. Winnie RIP.
I dreamily watched the clouds through the plane window as we descended into Sydney. The harbour’s sparkling waters made me smile with relief. I was home, where there were doctors and therapists I could easily communicate with, systems that I could access and understand, and friends and family whom I didn’t have to make an effort with; whom, by knowing me so well, could be a solid foundation on which I could stand. And Australia was far from the mean red-headed doctor. Australia would make things right.
We drove straight to our new house, which was walking distance from the beach. I had always wanted to live in Tamarama, near the cliff walk, a path along the Pacific Ocean that I had walked a thousand times in my twenties.
Mum had organised for the house to be rewired, termite-proofed, painted and decked out with necessities like cot linen and nappy wipes. Towels were folded in the cupboard. Fresh flowers were on the tables. Jasmine’s room was decorated to the hilt: timber vanity table framed with cut-out hearts, mirror, armchair, throw pillows, play table and chairs. Dov and Lev’s room needed a little more work. ‘I wasn’t sure what you would need, darling,’ she said apologetically. I opened the fridge. She had even bought soy milk, remembering that I had stopped drinking milk and eating cheese after I had learned of the hidden cruelty in the dairy industry. My father, brother and Lynn all told me separately that the task I had given Mum had got her going again. The situation with Dov and Lev had hit her with full force. Her psychoanalyst had said it was a nervous breakdown. Now it seemed over, or at least greatly diminished, thanks to the right medication, a good therapist and our return. I knew her work on the house was her way of saying,‘The suffering—your boys, my grandchildren—this tragedy, it is too much to cope with. The agony is too great for me. I can’t comfort you. But nevertheless, I love you.’
‘Thank you,’ I said, hugging my mother’s petite frame very tightly, unable to remember the last time we had held each other, wishing it had been more often and wordlessly trying to convey the depths of my gratitude for the love I knew she had furnished in each and every detail.
The next day Dror received an email. ‘Come here, Ondine,’ he called from his laptop. His voice sounded strange. Serious. He never called my name like that. I walked slowly to the desk, as if my legs were wading through honey, and stood behind him. It was the results from the Chicago laboratory.The result: positive. They had Allan-Herndon-Dudley Syndrome.
I immediately thought of the doctor in Israel. How I had planned my letter to her once she had been proven wrong. But she had been right. So it was me who was beaten, bloodied on the floor like an amateur boxer.
‘I’m reading the paper on it again,’ Dror said. I looked over his shoulder and forced myself to read:
. . . a novel mutation in the monocarboxylate transporter 8 (MCT8) gene associated with a characteristic neurodevelopmental phenotype with early childhood hypotonia that progresses to spasticity and global developmental delays. Affected patients experience moderate to severe psychomotor delays and congenital hypotonia, develop a myopathic facies, have diminished muscle bulk and generalised muscle weakness, develop progressive spasticity and movement disorders, and have limited speech . . .
I couldn’t read any more. I felt my body shutting down and I rushed out of the room and upstairs to our bedroom. I turned on the TV. Tears welled but I willed them away. This wasn’t the diagnosis I wanted. This wasn’t the one meant for Dov and Lev, for me, for us. I didn’t want to know any more. Fuck them, I thought. Stupid doctors. I don’t give a shit what they say. Dov and Lev are not that. They won’t be that.
The reference in the paper to thyroid reminded me of Devorah. She had said that Dov and Lev had a hormonal problem. Every doctor we had seen that year had dismissed the idea. They were wrong. The genetic disorder was in fact connected to their hormones, and not only that, the thyroid hormones originate in the neck, the exact place Devorah had rubbed with her hand as she sat solemnly behind her desk in that dark room.
As for Shlomo, I realised that only the previous day we had transferred funds to his charity. Could giving the money to other children have played a part in receiving the diagnosis? The act of tzedakah (charity) alongside repentance and prayer, I had discovered, is the trifecta in Jewish belief for imploring God to help you. Had God helped us? It was a terrible diagnosis but at least we could stop searching for answers. If nothing else, the act of charity reminds you that other people are worse off, and reading the stories of the families in distress certainly did this for me.
As I slowly packed my grief deep into the recesses of my body, I unpacked our belongings. There was so much to be done: new kindergartens to find, setting up and organising the house, returning to Voiceless and securing new therapists.
If anyone tried to discuss the diagnosis, I s
hut them down. Don’t. Want. To. Talk. About. It. I assumed my family was suffering under the weight of the news, but I wasn’t interested in communing with them in sympathy. The diagnosis, I figured, meant nothing. It was, I reasoned, such an unknown disorder, so little researched, with so few cases, that the profile of those who had it was meaningless. Dov and Lev were different. They would prove the literature wrong.
FIFTEEN
A few weeks later we rang my parents’ doorbell. My father stood by his large wooden front door, typical of Woollahra heritage houses. His broad grizzly face, still handsome at sixty-five and framed by loose shoulder-length hair, was open, lit by a wide smile. His love and grief hit me at once. Over his shoulder I saw the lounge room, buzzing with people. When my mother had suggested a welcome-home party for ‘just the family’ I’d thought it sounded great. My relatives hadn’t met Dov and Lev yet, though I knew the whisperings of problems had reached their ears. I hadn’t realised so many had been invited.
Our twin pram pushed a path down the hallway. Dov and Lev sat quietly side by side. The wheels bumped into Ketem and Tigger, who had just been released from ‘doggie jail’ (quarantine) and were getting to work, sniffing Dad’s Airedale terriers.
We forged ahead into the crowd. Dror went first—slowly and tentatively. I could see he was nervous. Jasmine, counting down the days to her fourth birthday, clung gingerly to my side. Efrat, my ally in all things Dov and Lev, brought up the rear.
‘Hello!’ A chorus of forty voices greeted us. I showed off my pearly whites. I reminded myself to breathe. In out, in out. My mother offered us drinks and I chose a glass of blood-orange juice. I had missed not only my mother’s hospitality but also her fondness for gourmet juices. For a while she seemed quite obsessed with an aloe vera blend, a strange, sweet, cloudy substance with pieces of the plant floating in it.
The Miracle of Love Page 13