The Miracle of Love

by Ondine Sherman

  I imagined that the therapists must believe in them and their potential to reach great heights. They must see them, as I did, as affected only temporarily by disability, steadfastly on the road to recovery.

  But they never expressed this belief to me, or any kind of reassurance that Dov and Lev would one day be able to walk and talk. I searched for explanations for this odd behaviour. Perhaps, I thought, they had seen hundreds of kids who never progressed far, so they were just being routinely cautious. Probably, I concluded, they had been professionally trained not to give parents any future predictions in case they turned out to be false.

  Occupational therapy (OT) worked on Dov and Lev’s fine motor skills through play. They practised grasping and releasing objects; at first, just opening and closing their hands was akin to climbing Mount Everest. Holding blocks and putting them on top of each other was a superhuman effort, as was pinching with their thumbs and forefingers.

  Speech therapy was a misnomer. Rather than focusing on talking, the therapist concentrated on their chewing. She gave us time limits for feeding them, as feeding time was hard work for both them and us, often taking an hour and a half for each meal, which meant four and a half hours a day. The energy they spent chewing, given it was so difficult for them, might undermine their calorie intake, she argued, so feeding them for shorter periods might help them put on weight. After the therapist was comfortable with their chewing she brought in the boards—big ugly machines with tens of pictures and buttons. When, for example, you pushed the picture of the dog, the machine shouted out ‘Dog!’ with an American accent.

  ‘We’ll start them off with non-mechanical boards, first, then move on to the more sophisticated kind like this,’ she said.

  Sophisticated?

  She was responsible for our red board and all the pictures in the kitchen, and before long we had plywood boards in blue, yellow and green, categorising images for toys, people and food. We had to show Dov and Lev the corresponding picture for everything they did. The green board came out at dinnertime: ‘Look!’ we’d point. ‘We’re having spaghetti!’ The picture of the bowl of spaghetti seemed too small, too blurry to successfully match the cut-up penne pasta they had in front of them. Talk. TALK, I willed them.

  ‘Mummy,’ I said to Lev. ‘Muuuuumy, Mmmmmmumy, Mummy.’ I put my thumb on his bottom lip and my forefinger on his top one. Gently I squeezed them together. He looked pretty cute, gazing up at me in confusion before his cheeks squeezed into a smile. ‘Mummy,’ I told Dov, looking deep into his eyes, trying to imprint something in his brain. But their lips wouldn’t come together.

  I didn’t know much about the processes of these kinds of therapies but all the activities seemed so slow, gentle, gradual. We spent months of twice-weekly OT trying to get them to separate their index fingers from the rest of their hands.

  ‘Where’s your pointy finger? Come on, put out your pointy finger, you can do it, Lev. There it is. No, not the other ones, pointy finger, Lev, where’s your pointy finger?’

  Prue, the OT, was younger than me but had a confidence and patience I quickly grew to admire. She talked to Dov and Lev as though they were their age, nearly three years old, not babies, asking them to follow her instructions, gently berating them when they lost concentration. I was shocked. Impressed. Guilty of too many cuddles.

  The more Lev tried, the more his hand would arch back, fingers curled, trapped in a claw. I would walk away from the playroom with a rigid gait, arms crossed, wanting to scream, ‘Why can’t he do it?’

  As soon as the anger came, the sadness descended and I wanted to cry, ‘I don’t understand, why can’t he . . .’ Sadness quickly led to desperation and an emotional finale of: ‘Please, please, please God, God? Please? . . . Just let his hands work properly. Give me that, just that, what do you want in exchange? I’ll do anything.’

  When we had first arrived back in Australia I had posted a picture on Facebook of Dov feeding himself a piece of toast.

  ‘Yay!’ everyone had said.‘They’re eating by themselves. That’s such great news.’

  I smugly agreed. What an achievement. But he soon stopped; it was a one-off, repeated only a year later. So I stopped allowing myself to be excited, to claim victories. Victories that turned to regression meant disappointment and depression.We must move forward. No time for backwards. The brain was only flexible for a little while longer. Tick-tock.

  Our house was one big therapy centre, and keeping up with the therapists’ objectives and communicating them to everyone in the team was a huge job. Still, I was immensely grateful that we could afford to do so much early intervention and well knew that other Australian children didn’t have the same opportunities. We wrote Dov and Lev’s goals all over our kitchen cupboards with whiteboard markers. Physiotherapy in blue dot points: Sit unsupported for ten seconds; tummy time three times a day at least; no supporting head—they can do it themselves! Occupational therapy in red: Bring hands together; open hands on command. Speech in green: Say aaah for ‘up’; encourage lip closure. The therapists were the experts, so Dov and Lev must be able to achieve these goals. Success was at my fingertips. I would show the red-headed doctor in Israel, after all.

  The thing was, though, that Dov and Lev had goals coming out of their ears. ‘Stimulation,’ we were told, ‘helps the grey matter form in the brain.’ Right. Stimulation it will be. But truly, how many more skills could they fit into their little heads? The truth of it was that I hardly noticed if goals were accomplished, because there were so many more to attain and, along the way, so very many abandoned.

  ‘Just leave me alone!’ I imagined them saying as their afternoon therapist arrived. High-pitched voices, noisy plastic toys, pushing and pulling. They need this, it’s good for them, it will help, it’s the only chance we have, I told myself. But all I wanted to do was sweep them off the play mat, turn our backs to Rachel and therapists, carry them to a quiet room, lock the door, cuddle and sing lullabies.

  Every few months there was a formal meeting with all the therapists (known as an IFSP, an Individual Family Service Plan, meeting) to talk about what they weren’t accomplishing and what they should and could be doing.

  After each meeting I berated myself for not having planned things better, not having reviewed and accurately identified outcomes ensuring that Dov and Lev would be better. If only we practised everything more, they would be doing well. It was my fault they hadn’t improved as much as they could. I had to do more. More.

  Dror was trying to work full-time, despite the situation. He was writing and submitting papers to scientific journals relating to both research discoveries left over from his PhD research and new material on the subject of his postdoctoral research in Israel. He was also becoming well-known as a kangaroo advocate, and had recently been called as an expert witness in a court case against the ACT government for an arguably unnecessary population cull. With a group of other kangaroo scientists, he came up with the idea to form a progressive think tank focused on kangaroos that would be later named THINKK, the think tank for kangaroos. Learning all things financial from my father, Dror was also spending lots of time investigating clean energy or green companies for possible investment, ultimately seeing himself fusing science with business. On the philanthropic side, our family was supporting an organisation called SMILE that helped other families who had children with rare diseases, and Dror sat on the board of directors.

  Hydrotherapy was the one therapy Dror and I did together with Dov and Lev; this was his time to connect to the boys. We took them to the public indoor swimming pool in Sydney’s CBD once a week. The four of us, with the pram and an enormous bag filled with towels, swimming nappies, snacks, spare clothes and medicine strapped onto the pram handle, could only just fit into the lift. In the ten seconds it took to go up one floor, I would look enviously at the kids holding their parents’ hands as they jumped off the escalator, so carefree. On one visit I pushed the double pram between the two swimming pools, narrowly missing childr
en’s naked toes as they scuttled around me, reeking of chlorine.

  Adults did laps in the Olympic pool to my right and the preschool kids played in the C-shaped pool on my left. At the end of the building was the small, warm baby splash pool. We parked the pram by the broad rows of seats, already filled with mothers and babies there for their ‘mums and bubs’ activity.

  ‘Want to get changed first and then we’ll swap?’ I offered Dror.

  A woman was smiling at me. ‘Twins?’ she asked.

  ‘Yes, identical boys,’ I said. Nobody could tell, at first, sitting in their pram, that they had any problems.

  ‘How sweet. Must be hard work? I don’t know how you manage.’

  I unbuckled the pram belt and picked Lev up, turning him over in a swift motion with my right hand as I peeled off his pants with the other. Did she notice his flopping head? I was scared to look back over my shoulder. Often strangers would mistake just what this meant. ‘Poor things,’ they would say, ‘they seem tired. Time for their sleep?’

  The hydrotherapist, Ruth, waved at me from the other side of the pool and walked around. She was trim and muscular and had her thick blonde hair in a ponytail.

  ‘Hi, I have one of them ready. Do you want him now?’ I said.

  ‘Sure, bring him over here and we’ll get in. Hi . . .’ She looked up at me. ‘Is this Dov or Lev?’

  ‘Lev.’

  ‘Ready to go swimming, Lev?’

  Lev was unresponsive and I cuddled him as I walked over to the steps. I put the woman out of my mind, imagining her staring at Lev’s obvious abnormality.

  The baby activities had started, and Ruth jumped in the water and pulled across a blue plastic rope with little floating balls from one side of the pool and hooked it on the other; a barrier to separate us from them. People looked over and I tried to act natural.

  She put out her hands. ‘Come on, Lev.’

  I quickly kissed his neck and handed him over. Dror had already stripped Dov off and put on his swimming nappy. He was heading our way. He handed Dov to me, jumped in, and took him back. He seemed oblivious to the ten mothers with their picture-perfect, able-bodied babies and toddlers less than a metre away.

  I stole a jealous glance across. If only we were on the other side. But, in any case, how would I have done a mums and bubs class with the two of them? What did a mother do if she had twins? I thought back to my worries when I first found out I was having twins. How ridiculous they seemed.

  I dangled my feet in the warm water, listening to the music from the Mummy and Me class—‘When you’re happy and you know it’—and tapping my foot despite myself.

  ‘Hi, sweetie!’ I waved furiously at Lev and was rewarded with a big wet grin. Lev looked his best in the water: his long, curly sandy hair slicked back, his face gleaming with pleasure.

  Ruth supported Lev, a hand under his tummy, moving him back and forth across the pool. He liked being face down better than being on his back, as he would startle easily, displaying the Moro reflex, which is meant to disappear at two months of age.

  ‘Kick, Lev. Come on, kick!’ Ruth encouraged, and Lev’s long thin legs made an occasional jerk then relaxed back into the water. He pulled his arms back rigidly behind him, overtightening his muscles with effort. The hypertone was called ‘spasticity’ and I had trouble saying the word.

  ‘Look how strong he’s getting!’ Dror beamed at me and I smiled back.

  Dov sat on Dror’s folded arms and Dror bounced him in and out of the water. Dov had to maintain his sitting position as he was lifted in and out of the water and today, rather than folding forward, he was managing to keep upright.

  ‘Yeled, Tov!’ Dror said encouragingly. ‘Good boy.’

  He was doing better, but oh, if only . . . I looked at the babies across the blue rope clapping in time to a song and kicking their fat little legs below the surface. If only they knew how lucky they were, how delicate the human body is. Ten trillion cells. And if just one tiny little thing doesn’t work, one microscopic piece of brain protein . . . everything is messed up.

  Gran and me, my ‘unfortunate fringe’ in full view, when I was in primary school. The shot was taken in one of those automatic photo-booths they used to have at train stations.

  In 1994 Dror came to Australia to see me. We put the camera on self-time at the end of one of our hikes, probably the overnight beach camping trail in the Royal National Park south of Sydney.

  Emile and I adored our Dobermann puppy Taurus and would play with him for hours. I’m wearing the anti-duck-hunting campaign T-shirt from my West Wyalong expedition to protest the hunt with Danielle.

  My family at the annual Passover family get-together at the Freedmans’ house in 1992, when I was seventeen.

  This was taken at a photo shoot with Jasmine, me, Mum and Dad just before Dror and I moved to Israel in 2005. Jasmine would have been just over a year old.

  MARK MORFFEW

  Dad and I were photographed for a Weekend Australian interview in which we spoke about founding Voiceless.

  ADAM KNOTT

  Jasmine loved to sit in the local café in Tel Aviv. Her favourite treat was ‘choco-belgi’—hot milk with a lump of dark chocolate she would stir in. When my parents visited us, Jasmine and Mum would often sit together, talking about topics of mutual interest, such as their favourite colours.

  At thirty-six weeks pregnant and sore, exhausted and terrified of the impending birth, I was trying to muster a smile for the photographer.

  SEAN MARKUS

  At about four months, Dov and Lev looked alert and loved to wiggle around on their play mat and touch the hanging toys. At that point I didn’t realise there was something seriously wrong.

  Lev and Dov loved the bath pillow—all wet, warm and squishy.

  When Dov and Lev turned one, we had a photo shoot in a neighbourhood park. Despite the smiles, it was actually a sad, stressful and self-conscious moment for me, as their developmental problems were becoming increasingly conspicuous.

  SEAN MARKUS

  On the advice of the physiotherapist, I was constantly working on strengthening Dov and Lev’s neck muscles as well as encouraging them to keep their arms forward and their hands together. This armchair was a good break from the floor and helped me to keep them entertained and motivated.

  We first tried to differentiate Dov and Lev with a wrist band, and then by dressing Lev in something red. I could always tell them apart in person, but not in pictures. For this photo shoot they were both wearing red pants, but in any case I’m confident that this is Lev!

  SEAN MARKUS

  At Dov and Lev’s first birthday party we sang ‘Happy Birthday’ in English, then in Hebrew. It is an Israeli tradition that the birthday boy or girl wears a garland of flowers on their head.

  Dov and Lev rarely sat like this, but we had put them down for a moment and they looked so cute I took a picture. Unless it was cuddle time or mealtime, or they were in their prams, they were always placed in a position where they had to strengthen their muscles.

  I love this photograph of my three children. For my father’s birthday in 2010, I arranged a photo shoot with his five grandchildren. It was a challenge for the photographer to get Dov and Lev in a good position while smiling.

  MARK MORFFEW

  Lev having a laugh with my father in 2012.

  CANAN KOKDEN

  I love messy craft activities, and both Dov (shown here) and Lev enjoy the sensory experience of covering themselves, and the table, in paint.

  Dov and Lev made great strides with ‘expressive’ communication with our home-school teacher in Sydney. Here Lev is being read a story, then asked to match the picture. He successfully points to the house on the communication board as well as the picture in the book.

  Looking sharp in tuxedos, Dror and Dov have a cuddle before we go to church for Rachel’s wedding.

  This photograph was taken just before Dov and Lev grew too big to fit in a regular double stroller. I love Dov’s cheeky gri
n in this picture.

  Helping Lev blow out his candle when he turned four. I know it is Lev, as he had the heart-shaped cake and Dov, the bear. We thought they both had the chicken pox so we cancelled the party and just celebrated with my immediate family.

  Dror and I on a kid-free trip to Hamilton Island in 2012 with a group of friends. Two days of blissful relaxation.

  Ketem and me.

  CANAN KOKDEN

  This is us today. We’ve stopped designating colours for Dov and Lev and now let them choose what to wear. It’s easy to tell them apart at the moment, as Lev is missing his front tooth. Both boys are laughing at our new Israeli nanny, Ora, who is performing an hilarious pantomime with a rubber duck behind the photographer.

  SEAN MARKUS

  SEVENTEEN

  It was nearly midnight. I opened the fridge and took out two small glass bottles and a tub of apple puree. On a well-worn plastic Spiderman plate I placed two small spoonfuls of puree. I opened the first bottle, DITPA, and took out two bright red capsules, then pulled apart the gelatin covers and poured the white powder onto each spoon. The other bottle contained bitter white pills, Thyroxine, which I broke in half.

  The pills had first appeared in my fridge some weeks earlier, although my father had been working on getting them for months. Since we’d first received the news that Dov and Lev had serious developmental problems, Dad had gone into overdrive—talking to everyone he knew, learning the new language of medicine, researching possible diagnoses and finding the best doctors in the world. My father was not satisfied with stopping once the diagnosis had been given; he was now intent on finding a cure. He had compiled lists of international medical researchers and, by pushing his way through hospital bureaucracies, had arranged to meet a number of these specialists. He’d flown to the US and Europe with my mother and put faces to names on his list. Germany had been his second stop.