‘How are you?’ my cousin Jacob said loudly over the thrum of twenty-five simultaneous conversations bouncing off the living-room walls. I hadn’t seen him for three years. Balancing my glass carefully, I moved Lev to my right arm.
‘Hi there, little one!’ Jacob moved closer and touched Lev’s hand tenderly. Lev didn’t respond. His wet mouth was agape and his gaze unfocused. I felt embarrassed.
‘Say hi!’ I put my glass on the side table and took Lev’s small, soft clenched fist and waved it for him.
‘They really are identical!’ he said with a smile. ‘Is this Lev or Dov?’
I did a double-take to be sure. ‘Lev.’ I smiled, always relieved when the topic turned to twins.
‘Is it good to be back?’ he asked.
‘Oh yes, really great,’ I answered with genuine relief.
‘So . . . How are you?’ Jacob repeated.
I paused, unsure, and checked his face for clues as to what he expected me to say. Share with me, his green eyes invited. They were freckled brown; I’d never noticed before. Let me in.
How am I? How am I? How the fuck do you think I am? I thought to myself, with Robert De Niro’s Taxi Driver voice in my head. Readjusting Lev in my arms, I felt my shoulders tighten under the obligation to explain myself. Chat about the diagnosis? No chance. I couldn’t even say the name. Instead, I drained my glass of delicious blood orange.
‘I’m so sorry to hear that they have been having problems,’ Jacob continued carefully. ‘It must be hard for you and Dror . . .’
‘Oh, we’re doing fine. The flight was surprisingly good; the boys slept nearly the whole way. But you know—twins aren’t easy, “double-trouble” as they say. How about you?’ I diverted the conversation. ‘How have you been?’
Later that night I lay in bed, unable to sleep, reflecting on my responses. Rather than asking how I was, everyone should have asked who I was, since I now saw the world through changed eyes. I often spent time considering the correct analogy for how terribly awful I felt: was it like being blasted open by a grenade; having an open chest wound filled with writhing maggots; like I was drowning and no one could hear my screams? I didn’t know.
In those first months home, the socialising caught me off guard. Friends also arranged a welcome-home party, called frequently and suggested get-togethers. They were excited to have me back, greeting me with warm hugs and complimenting Jasmine on her growth and development. They were sweet but awkward with Dov and Lev, unsure whether to hold them, talk to them or just smile kindly. Dov and Lev stared at each of them in turn with blank faces, in their OFF mode. I tried to provoke responses from them, as I had at their first birthday party, with little success.
Friends were also full of questions about the twins’ ability to walk, level of comprehension or prospects of talking. I refused to name the diagnosis, offering vague explanations about problems with brain proteins instead. If I said the name, it might be real. I also didn’t want anyone googling it and reading the horrible prognosis. I became adept at diverting conversations. There was really nothing they could say to help me, I figured and, in any case, there were no words to describe how I felt, no words at all.
Lisa and Louise were both mothers, busy with their lives: taxiing their children to and from kindergarten, karate, ballet, baby music groups; shopping for groceries; doing laundry; paying bills; maintaining careers; managing mortgages; breastfeeding; co-sleeping and sleep training. They would come to my house for play dates, and I was conscious that Jasmine was keeping me connected to normal motherhood activities and, inadvertently, allowing me to continue to relate to my friends. Through it all I avoided discussion of Dov and Lev, kept it all to myself.
One Friday afternoon a few months after our return, Lisa and her children, Amanda and Patrick, came to play. ‘It’s so nice to have you back,’ Lisa said with a warm smile.
We sent the kids out to the swing set in the garden with high hopes that we would be able to catch up properly. Efrat had taken Dov and Lev out in the pram. They had just finished physio and the dinner routine would soon begin. I was relieved they were out of the house. I knew that I couldn’t give them the concentrated attention they required and at the same time focus on my friend.
Lisa sat on the kitchen stool, her long skirt billowing around her. I poured ground coffee into my plunger and placed a bag of dandelion tea in a cup for her. Lisa played with her hair, absentmindedly wrapping her rich brown curls around her fingers, just like she had done at nineteen when we were at university. So nice to be home, I thought for the thousandth time. Beyond the open glass doors I admired the burgundy red of the velvet kangaroo paws emerging from their nest of long green leaves. They matched Lisa’s skirt. As we watched the children play, she told me of her struggles with Amanda and Patrick’s rivalry.
The conversation paused and she noticed the red fabric board on the wall next to the fridge.
‘What’s that?’ she asked.
Fifty small laminated pictures were velcroed onto the red board and arranged in groups: some were photographs of toys, others were food choices such as spaghetti or cereal. Another group contained symbols communicating ‘yes’, ‘no’, ‘more’ and ‘finished’.
‘That’s a . . . um, this communication system thingy we’re starting,’ I stumbled. I sat down opposite her, my back to the open door and the swing set. Deep breath.
What I should have said: ‘How much I want Dov and Lev to talk. So much. Multiply the “so” by infinite.’
I should have also cried. Given her the opportunity to show she cared. To support me.
Instead I started to explain, my voice carefully measured. I felt my lips tremble dangerously and I focused hard on keeping my face expressionless.
‘It gives them the ability to make choices with food and also to communicate simple things like . . .’
The truth was the ‘alternative’ communication system made my skin crawl and I felt the speech therapist had pushed me into it. She had pointed to their tongues. ‘See how they’re resting at the bottom of their mouths?’
‘Isn’t that where tongues usually sit?’ I’d asked.
‘Pay attention to your own tongue,’ she had said slowly.
‘Notice how it sits up in the roof ? Until that happens with theirs, it’s near impossible to make good sounds.’ She had also insisted that children who don’t learn the alternative communication system become frustrated and start to scream and whine. I could tell she didn’t believe in Dov and Lev. What’s more, she had insisted they drink only thickened fluids. Since they were babies, they had made heavy wheezing sounds. Dror and I figured it was just part of their floppy internal muscles, nothing to worry about. But she thought they might be getting liquid into their lungs, so water and milk were replaced with gluggy pink and lime-green jellies that were full of ingredients I didn’t understand.
‘What, Patrick?’ Lisa shouted, bringing me back to reality.
Patrick was peering at us from the open doorway and Lisa went to investigate. I heard her in the garden. ‘No. Take off your shoes. Yes, I’ll help you. Don’t get your socks dirty. The slide’s slippery. It’s dangerous. Take them off. No, Patrick, I said take them off.’ She came back inside with a big sigh. ‘Sorry, you were saying?’
I tried again but our conversation was interrupted several more times and I failed to get the point across to her. The point was that I was dying here. My hope was dying. And it was killing me.
The kids walked into the kitchen demanding food. ‘Muesli bar? Toasted cheese? Banana? Sultanas?’ I offered. There were no more opportunities to explain that day.
Let it go, Ondine, I thought, let go the expectation that Lisa, that anyone, could possibly understand. Just focus on the good things in front of you. Years of friendship. History. Her sweet kids and the years I’d missed seeing them growing up.
‘Too cute,’ I said, giving Patrick a squeeze and ruffling his hair. ‘He looks just like you.’
That night I lay awake,
unable to sleep. Should I have handled it differently? Hadn’t Lisa heard the pain behind my words? How would I behave if she were in my place? I didn’t know. But I did know that I, too, had let friends down over the years, mostly because of my fear of emotion and my aloofness.
But still, I wanted to shake her, shake everyone I knew. I so wanted her support and to let her know how much I wanted Dov and Lev to talk.
‘What if it were your children?’ I wanted to say. ‘Vulnerable. Reliant. Voiceless. Dependent. Unable even to go to the toilet by themselves. How would you feel knowing you would change their nappies for the rest of your days? Until you died, and then who knew if anyone would again. Your grown children sitting in shitty nappies. In an old-age home. Where they put disabled adults in this stupid fucking country. Where no one gives a flying fuck what happens to them.’
I was working in the office about thirty hours a week and Voiceless was continuing to gain momentum, its reputation as a force to contend with growing among the factory-farming industries and associated government departments. Sometimes I doubted our chance of success. Voiceless, even combined with all the other animal groups in Australia, was still a weak contender, a David against a Goliath, and our funding was a drop in the ocean compared to the billions the industries had at their disposal. Ingham, for example, the biggest player in Australia’s chicken industry and the owner of many factory farms, employed about eight thousand people spread over all states and was worth about 1.6 billion dollars. The owner, Bob Ingham, was reported to have over a billion dollars in personal wealth. It was impossible to compete with the power that companies like Ingham wielded over government. We had to play smart; it was our only chance.
Through our animal-law lecture series, my father and Katrina had built up an army of not only young student lawyers keen to create change but also senior barristers, a host of top law firms and senior counsels offering to provide their expertise to help challenge cruel laws. Animal law, which had not existed in Australia when we founded the organisation, was now being taught at an increasing number of Australian law schools. Graduates were competing to intern at Voiceless. We were also seeing the fruits of our grants program, with many grassroots projects we had funded working to expose legalised cruelty.
As a result of Elaine’s brilliant organisational skills, our awards events had developed from low-key affairs into sparkly red-carpet extravaganzas, attracting media attention and, to our immense satisfaction, causing anxiety among the industry bodies we were targeting. I had many other programs in the pipeline, mostly focused on education. While Dad was masterful at networking, I relished creating new projects and enjoyed the strategic planning.
Dov and Lev’s second birthday arrived. I agonised over what to do. Children’s birthday parties in Sydney were serious business and I had been to scores of them with Jasmine. But I wondered if there was any point to the party. None of my friends’ kids played with Dov and Lev, and how could I blame them? Dov and Lev barely responded to people they didn’t know well. Even Jasmine didn’t play with them. Efrat had returned to Israel and although I knew I would miss her, I had found a replacement who seemed great. Rachel was British, a primary-school teacher by profession, a natural with kids and super-organised. Would they even understand it was their birthday? What would my friends’ kids do, anyway? I needed activities—beat piñatas for lollies, pass the parcel, musical chairs—all things that Dov and Lev couldn’t participate in.
But I thought not to have a party was unfair to them. It was an admission of defeat, or even a sign that I was ashamed to show them off. But was having a party merely a result of my own stubbornness to appear normal? I couldn’t decide. Finally, I invited only my parents and Emile’s family. I ordered a cake and big helium Elmo balloons. Dov and Lev went crazy for a balloon, stretching their arms to try to reach up, smiling and kicking their legs, their bibs soaked with extra drool from the excitement.
Full of optimism, I put party hats on Dov and Lev and took pictures. But they spat out the cake, lost interest in the balloons and looked unimpressed with the presents.They could only play with one hand at a time and even then, with claw-like fingers; it was difficult for them to hold any object. So the puzzles and blocks that my family bought were a failure. My parents were quiet, barely singing ‘Happy Birthday’. Emile’s youngest son was sick and had stayed at home with Caroline. I felt sad and alone. I returned the candles to the kitchen drawer. Candles that only I had blown out.
I kept meeting friends for play dates. I hoped to appear normal and most of the time it seemed to be working. Denise even congratulated me on how well I was handling it all. ‘Dov and Lev are so lucky to have you guys as their family.’The sentiment made me think of Dov and Lev as little unborn souls flittering about like butterflies before coming to land in my life. Maybe I was the blossoming flower. I needed them to survive. I liked the thought. They had chosen me. It was preordained.
But as the months passed, my responsibilities as a mother, advocate for my special-needs children, therapies project manager, wife, friend and leader of an increasingly well-known organisation created a jarring disconnect. Compartmentalising became natural. A morning of media interviews for Voiceless was followed by an afternoon in the hospital, sitting with Dov and Lev as they recovered from another MRI. A morning spent helping out at Jasmine’s kindergarten fair was followed by an afternoon searching for shoes to fit Dov and Lev as sales assistants stared bewildered at their AFOs, the ankle-foot orthotics they wore under their shoes. Too many personas, too many parts to play. Slowly my stuck-on smile faded, although perhaps not noticeably. I heard the shrill tone in my voice as I responded to friends and colleagues: ‘I’m great, thank you. How are you?’ I didn’t like it.
SIXTEEN
One-on-one time with Dov and Lev was sublime. Cradled in my arms, our eyes locked together, my fingers making circles on their soft, downy bare backs, I could forget for a second and succumb to the love. Moments later, though, I would again be overtaken with anxiety and desperation. There wasn’t time to cuddle them so much; there was too much therapy to be done. The brain is most flexible under three. We had to rush. No time to waste. Clock ticking.
I was asked constantly how the boys were.
‘Oh, well, just a little bit of improvement, snail’s pace . . .’ My voice trailed off, thinking of snail trails on my garden path after rain. Snails were slow, sluggish, easy prey for birds, easy to squash. Nobody wanted to be a snail. We were failing. Improvement and ability were what equalled success.
‘As long as they’re happy and not suffering, that’s what’s important,’ people would say to me. I’d nod in reply while screaming No! in my head. That’s not right. What’s important is them clapping, pointing, crawling, sitting, rolling, babbling, speaking, walking . . .
Therapists had now become part of my daily life, arriving at my front door with their bright primary-coloured boxes full of noisy made-in-China toys and torture-chamber equipment constructed of straps, bolts and velcro. Each week we could have up to fourteen hours of work with speech therapy, occupational therapy, physiotherapy and hydrotherapy.
Lev was better at standing than Dov. With a steel pole behind him, strapped with velcro supports on his thighs, waist and chest, he stood in front of a wooden table with a cut-out semicircle. His forearms were linked by a looped tennis sweatband to prevent them from pulling back, a hypertonal response to effort. Bloody dystonia. Lev could stand for up to forty minutes playing with a box of Lego pieces, pulling them out of the box one by one, struggling to grab them with bent fingers before throwing them happily onto the floor.
While Lev was at his stander, Debbie, the physiotherapist, and I worked with Dov. My father had found Debbie before we returned to Australia, and two days after we flew in she had already started working with the boys. Tick, tock.
Debbie was an attractive woman in her fifties, with three adult children and thirty years of experience behind her. Energetic and enthusiastic, she was a one-person cheerle
ading team and often broke into high-pitched song to keep the boys’ attention. She dressed beautifully, in silk shirts and sparkly earrings, and would say, ‘Oh dear,’ before dabbing regurgitated yoghurt and banana off her blouse with a baby wipe. She was also our go-to person for all things Dov and Lev, and our informal case manager. What pram should we get? What’s the safest way to bath them? Where do we find a hydrotherapist? How do we get a carer card? She was more than generous with her time, and I felt we were lucky to have her.
Dov was better at sitting than Lev and could keep his head up for long periods before it flopped forward or to the left. Debbie would sit behind Dov, supporting his shoulders, her legs splayed either side of him in case he fell. My role in the sessions was entertainment. I staged pantomimes with hand puppets or made towers of cardboard Wiggles blocks, my voice rising higher and higher as I sang ‘Up, up, up, up’ until the final Wiggles face beamed at me from the top. I smiled with pride each time Dov’s clenched fist hit them down, his brows furrowed with effort.
Dov and Lev were competitive and we used this to our advantage, as we did their adoration of dummies. Every day we would lay them on their tummies and place their dummies at the end of the play mat, encouraging them to reclaim their prize, leaving a speckled trail of drool behind them.
Each therapist had different goals they wanted Dov and Lev to achieve, whether it was clapping hands, transferring an object from one hand to the other, opening and closing their hands on demand, pinching or pointing. Then there were the bigger ambitions of crawling, floating in water, kicking or even independent sitting.
I thought the therapists must have witnessed remarkable cases of children who had miraculously improved as their brain synapses suddenly started zapping properly.
I wondered why this still seemed so hard for Dov and Lev, and imagined that one day when they were saying their usual ‘aaah’, it would lead into a ‘maa’ and a ‘baa’, triggering their brain into action, and they would speak the word ‘Mummy’, which they had heard a million times.
The Miracle of Love Page 14