The Miracle of Love

by Ondine Sherman

  ‘Just tell me when there’s a cure,’ I had told Dror and Dad unequivocally.

  But Dror still found it impossible not to tell me every new detail of the research. He became excited. Then disappointed. Then excited again. At least he had my dad to share the rollercoaster ride.

  We drove down to the Hawkesbury River in our seven-seater. Efrat had come back to Sydney on a three-month visa and was contemplating studying and possibly making it her home. The boys hadn’t seen her for nearly two years and had seemed delighted when she suddenly appeared in our house. She was nannying for us in the evenings and on weekends. Dror, Jasmine and I, with Efrat pushing Dov and Lev in the pram, made our way down to the riverbank and found the group among the crowd of holiday-makers. Jasmine ran off to play with Jacob, and Dror stood by one of the tents, chatting as the men opened beers. Efrat took Dov and Lev for a walk in the pram to scope out the area and I sat down on the picnic rug.

  ‘What a day,’ I sighed to Louise. The kids were laughing and running around happily. The sky was blue, wide and clear of clouds. Even the grass seemed a brighter shade of green.

  Louise became involved in a conversation to her right and I sat quietly watching the jet skis and speed boats pulling water-skiers parade past. Kids were running along the bank after a tall person in an Easter Bunny suit. I smiled.

  ‘Hi, I’m Emma,’ said a woman, sitting down next to me. She was quintessentially Australian, straight out of a Qantas ad, with sun-streaked straight blonde hair and a white V-necked T-shirt on a slim, tanned figure.

  ‘Nice to meet you,’ I said. ‘You have kids here?’

  ‘Yeah—over there, the boy with the red T-shirt and the girl in the flowery dress.’

  I looked at two pretty blond children running past, chasing an older girl.

  ‘How about you?’ she asked.

  ‘That’s Jasmine down there . . .’ I pointed to the riverbank where Jasmine was standing with Jacob. We both watched her for a moment.

  ‘. . . and I have twin boys as well,’ I said cautiously.

  ‘How old are they?’ she asked.

  ‘Oh . . . three.’

  ‘Wow—hands full!’ she said, smiling. ‘Do they get along with each other?’

  ‘Yeah . . . pretty much . . . Sometimes a bit jealous . . . It’s nice that they . . .’ I sounded unsure.

  Behind me I saw Efrat parking the pram with Dov and Lev and walking towards the toilets. A cool shadow fell over the picnic rug. Lev started whining like a cat’s meow. ‘Pick me up!’ he was saying.

  I stood up midsentence and took him out of the pram. He flopped onto my lap; the handkerchief around his neck that caught his drool was already soaking wet. I wiped his leaking mouth. Emma looked at him, then back at me.

  I was acutely aware that my boys did not fit into this scene of sun-kissed little feet and pastel-pink skirts flying as kids chased the Easter Bunny along the riverbank past happy perfect families laughing in the sunshine.

  I gave Lev a ferocious kiss and looked at Emma. Awkward. What should I say? Was it my responsibility to explain my child to her?

  On the soft grass, the sparkling river in front of me, Emma and I sat quietly.

  I could not find the right words. A few possibilities raced through my mind: ‘They’re developmentally delayed.’ Was this even correct? I didn’t think ‘delay’ was the right description since it suggested catching up. ‘They have special needs.’ This was the phrase I liked and used the most, but it was open to interpretation. I suppose that’s why it appealed to me. It could just as easily refer to a food allergy as this flopsy bunny on my lap, so it was ineffective in communicating any useful information.

  ‘They have problems,’ I said. Well, that sounded weird. Didn’t we all?

  I smiled and so did she. Others arrived back from the river.

  ‘Nice talking to you,’ said Emma, gracefully moving on to chat to others. The moment was lost and I was left inexplicably sad. I hugged Lev and slumped over, resting my chin on his shoulder.

  Efrat was walking back towards us and I didn’t feel like talking. Leaving Dov in the pram, I quickly stood up. I lost my grip for a moment and Lev’s head tipped back, arching his spine into a backbend. I pulled him up. It was difficult to balance him on my hip as I did with Jasmine; he couldn’t support his weight and readjust his own balance properly. I walked towards the riverbank to dangle his feet in the water, suddenly feeling guilty that he wasn’t experiencing the river and grass like the other kids.

  Why didn’t I say anything to Emma? I wondered. I had shortchanged myself yet again, missing an opportunity to be honest in order to present myself as easygoing and carefree. In my twenties I had read a book analysing personality types; I was a Peacemaker who would rather ignore whatever is wrong so that the tranquillity of their ride will not be disturbed. The description fitted me well.

  I sat on the muddy brown grass near the water. Lev wiggled his toes in the dirt. I could feel his pleasure like it was my own.

  ‘Here,’ I said, holding a big gum leaf out to him, waiting for the time lapse between him seeing the leaf and putting out his hand to take it.

  Yes, it’s true, I philosophised, I like a nice calm bike ride . . . but doesn’t the media, women, my community encourage and reinforce this trait?

  I knew I needed to stop pretending, not only for myself but also for my children, and to challenge our superficial Stepford Wives society. Next time I would break the picture-perfect setting of a sparkling green-grass day and say in a confident tone, ‘Dov and Lev have disabilities.’

  The kids were now taking turns on waterskis. Jasmine had been waiting a while and it was now her go. Dror was standing by the boat and, with a few other dads, helping the kids on and off. I watched Jasmine proudly as she stood confidently on the waterski while the boat took off, her lithe body in perfect balance as the water splashed around her. I walked slowly back towards the picnic blanket and as I grew closer I noticed a large black inner tube sitting on the riverbank.

  I put Lev down on his back on the grass. He squinted at the sun and flailed uncomfortably. I quickly ripped off my clothes, revealing my black swimmers and muffin-top tummy. Kneeling over him, I took off all his clothes and dumped them next to mine. Holding him in one arm, I slowly made my way down the muddy bank into the water, dragging the tyre with me. It fell into the water with a splash.

  ‘Let’s see if this works, Levy,’ I said, manoeuvring him into the tube. Lev slipped out of the tube and I grabbed him just in time as the tube floated away.

  Suddenly I saw one of the fathers coming towards me. He jumped down the bank with his shorts on.

  ‘Here we go,’ he said as he grabbed the floating tyre and held it firm.

  I tried again, lifting Lev up into the rubber circle. A few women came down to watch.

  ‘What a cutie,’ one of them said. ‘He’ll enjoy the water, it’s nice and fresh.’

  I felt whole again; they had seen Lev, recognised his limitations and, without any spoken words of acknowledgment, were embracing us.

  Lev splashed happily by my side and my toes squelched in the thick river mud. I waved at Jasmine and Dror, both now sitting in the boat as another child had their turn on the waterski, and thought the moment might be picture perfect after all.

  TWENTY-FOUR

  Our house had become impractical, with its narrow doorways, already bearing the scars of the mammoth double pram, steep spiral staircase and hills in every direction outside our front door. Going for a walk in Tamarama with the pram, a five-year-old with chopsticks for legs and two raucous cat-chasing dogs was challenging.

  We were also crowded.The trusty team of therapists revolved through the front door, setting up their sessions in the middle of our small lounge room and shouting encouragement. They often came in the afternoon, at the same time as friends and family arrived for play dates with Jasmine. Shoulder by shoulder, we all talked over each other with wobbly cups of hot tea, dripping ice creams, bulky equipment and s
inging toys.

  I began to look for a new home. After several months a house was listed in Bondi, the stomping ground of my debauched university days, packed with happy memories. The house had wide doorways, a bedroom for Dov and Lev on the entrance level, and a flat living and kitchen area around which it would be possible to push or wheel Dov and Lev. It was a hill-free walk to shops and there was a small pool, perfect for hydrotherapy.

  The new Bondi house was my fourteenth home in eighteen years and the fourth since Jasmine’s birth. Decked out with tiles, glass and stainless steel, the house felt cold and too modern. I quickly filled it with artworks, thanks to my mother’s large stock of paintings and photographs. For Jasmine’s room, I trawled through vintage fairy pictures on eBay and settled on some two-dollar classic prints on fabric that, in a moment of creativity, I mounted on wooden frames. Her curtains were seasoned with butterflies and the walls covered in chalkboard paint to encourage her own creativity.

  Dov and Lev’s room had never looked good; this was largely because they were twins and needed double of everything, but also because they couldn’t tell me what they liked. When Jasmine was two she made her preferences perfectly clear: princesses, fairies and butterflies, the colour pink and anything with sparkles. While other boys I knew fixated on Thomas the Tank Engine, dinosaurs or Teletubbies, Dov and Lev were unusually easygoing but observant.

  I could switch the toys in their hands, replacing Lego blocks, say, with small toy cars. In regular children, this would provoke a tantrum and screams of ‘Give it back! It’s mine!’ But for them, it was no problem. Seeing the new toy, they would slowly adjust their fingers and arch their hands in an attempt to pick it up. But their hands would be all wrong, fingers bent the opposite way. Damned brain signals sending faulty messages. So the toy would fall on the floor. Again, this provoked no reaction. They wouldn’t look for it or complain. Just try again with the next block or another car on their table, readjusting their fingers. If their table was empty, no toys left, they would wait. Patiently.

  Was I treating their room the same as Jasmine’s? Did the aesthetics of their room matter less than hers? I wondered guiltily as I rummaged through the change table drawer for Dov’s pyjamas one evening. They shouldn’t.

  I pulled out Lev’s red top and placed it on the change mat next to Dov, ready for Lev when he came out of the bath. I found a green one for Dov and pulled it over his head. I put his hand in the armhole.

  ‘Push, push . . .’ I said as I waited patiently for him to put his arm through the hole. Slowly, slowly, he had learned to straighten his arm; it had become a daily source of pride. ‘Good job, Dovdovoni!’ I squealed as he waved his arm in the air with glee, seemingly surprised to see it had reappeared from the other side of the sleeve. I held my hand up above him and waited for his reaction. The time it took for the boys to see something then react physically could be close to a minute. Finally his arm came up and his scrunched fist connected with my palm. ‘High five!’ I said happily.

  I swapped pyjama-clad Dov for a slippery wet Lev and started to sing the ‘pyjamama’ song I had learned in Israel. He watched me, his green-rimmed hazel eyes open wide and awestruck like a veritable groupie. I finished and he kicked his legs, wanting more, so I began a new song. While Dov loved ‘C Is for Cookie’ and my baritone monster voice, Lev loved nothing more than when I serenaded him with high melodic tunes like ‘Somewhere Over the Rainbow’. I picked Lev up and he sighed heavily, a sign he was very relaxed and happy to be in my arms.

  The following day I got stuck into the job. From under the stairs I took a small wooden shelf which had been used as a depository for keys and mail, and filled it up with their picture books and a big red stuffed Elmo. I was eager to find a theme and Elmo had recently captured their attention—their eyes would widen slightly when they saw him on TV, and on a great day a giggle and even an ‘eehuk’ would erupt.

  Above the change table there was a large blank space. A big-boy picture, I decided.

  ‘Right,’ I said, and drove to the kids’ home-decorating store at the mall. I was immediately drawn to an artwork of a boy in a racing car zooming through a finish line with the crowds cheering.

  I stood in the busy shop, facing the picture.What was I doing? How could I buy a picture depicting a child doing something that Dov and Lev might never be able to do? Driving required a whole range of abilities. Strength, coordination, intellectual acumen. What would the purchase say about me? Family, therapists, friends would think I was in denial. The picture would jar with the daily reality of the room: my boys flopped on a change table at the age of three. I believed in their future as able-bodied, but did others? I believed they would drive, one day. But did others? No.

  This point had been recently reinforced by their Sydney paediatrician.

  He asked a thousand questions, weighed, measured, observed and examined both of them in laborious detail. Their hip X-rays had come back and they looked good, bones all in the right places. Hooray. Small victories. The doctor gave us contact numbers for all the agencies and organisations that provided disability services.

  ‘This is a good agency,’ he said, turning the screen of his computer so Dror and I could see. Lev was sitting on my lap and Efrat was giving Dov a drink in the pram.

  ‘It’s a social group for children with intellectual disabilities. Oh, and have you heard of the Special Olympics?’ He smiled. ‘Wonderful organisation . . . for when they are a bit older.’

  Why is he telling me this? I was genuinely confused. He must have got ‘intellectual’ and ‘physical’ confused. My boys had a spark in their eyes, they were bright. A bright spark.

  I brushed off his momentary confusion and focused on the list of questions I had in front of me.

  ‘Mmm . . . this next question is a bit of an embarrassing one,’ I said, smiling. ‘So, ummm, their balls . . .’ I started, my voice uncomfortably high, ‘. . . they look a bit small. Maybe you could check them?’ I felt blood rush to my cheeks. ‘They just don’t look the same as my friends’ children’s,’ I stumbled. Now I sounded like a paedophile.

  ‘Let me have a look,’ the doctor offered.

  I took Lev back to the examining table and pulled off his pants and nappy.

  ‘Well,’ he said when we were seated back at his desk, ‘it’s not important. They won’t, ahem,’ he cleared his throat, ‘need them to procreate in the future.’

  I froze.

  Had he just said that? I looked at Dror. Had I imagined it?

  What did he mean, that they wouldn’t have children? Or even have sex? Damn it, they are arrogant, doctors. Hate. Hate, hate. They are not God. I took a deep breath. He does not know the future, no one does. But despite my anger, I clammed up as usual, smiled and said nothing.

  In the store, remembering this, I wondered whether buying this picture meant I was still hoping for a recovery, that I wasn’t ready to accept their disability. Was this a statement of maternal strength or a sign of someone who was clinging to hopeless dreams?

  That night, as Dror and I undressed in our room, Jasmine and the boys finally asleep, I attempted to explain my quandary.

  ‘If you like it, buy it,’ he said, walking into the bathroom and throwing his T-shirt into the laundry basket. I didn’t answer. ‘What’s the problem exactly?’ he asked gently. But I felt silly, unable to explain, even to myself, what this meant to me, what it symbolised.

  ‘No, it’s really not a big deal,’ I replied, throwing in my jeans and turning to give him a hug in front of the bathroom mirror. I caught my reflection. Come on, get your shit together, it said to me. If you can’t even manage to buy a stupid picture for their wall, how are you going to cope with the really hard stuff coming your way?

  For three days I thought about the purchase. I stood in Dov and Lev’s bedroom doorway each evening, Ketem warming my legs, the questions tortured me. Was I accepting them as they were or was I in denial and, if so, was that a bad thing? Where did hope end and fantasy take over?
What did others expect of me, and was it important to take their expectations into consideration? When Dov and Lev were carried into their room I wanted them to see bright and happy things. And I wanted their room to remind me each day that my boys could have their dreams, whatever they might be, racing cars or otherwise, and those dreams could come true.

  I marched purposefully back to the shop; when I got home, I nailed in a hook and hung the picture up immediately.

  ‘Look, Dovy Dov,’ I said as I wrapped him in his green towel that evening, ‘a car! Broooom, broooom, broom, broom. Beep, beep. HONK!’ I turned his wet little head to face the picture above his change table.

  ‘Car,’ I said again. He smiled. A handyman had added pieces of wood to the change table and now it was longer, wider and more comfortable. I looked at their white cots against the walls. Tigger’s black paws poked out from under one of them.

  Big beds, I thought. Why not? They’re old enough. That night, in a fit of internet shopping, I bought two beds, one in the shape of a racing car, red and black, and the other a yellow mini.

  TWENTY-FIVE

  It was nearly midwinter; short days descending quickly into darkness meant whale migration season. I walked the ocean cliffs to scan the horizon for the distinctive sprays of water. No whales today. I enjoyed the sound of the ocean and breathed in the thick salt air before whistling to Ketem and Tigger.

  I tried to get my thoughts together. The weekend had been busy. Dror was in America with my father, meeting with medical researchers, and suddenly feeling vulnerable to a wave of grief, I decided that, rather than shying away from social contact, I would make a handful of arrangements.

  Denise and her boyfriend came to the house on Saturday afternoon. She hadn’t seen Dov and Lev for several months.

  Lev was standing in his walker, a contraption that looked, to many, like a wheelchair. I cringed at the word ‘wheelchair’, and many people confused the terms ‘walker’ and ‘wheelchair’ when they visited our house. Apart from wheels, I saw nothing similar about the two objects.