I stood next to the white adult bed with metal bars. Lev lay naked on his tummy and I watched as his rib cage moved up and down. Only thirteen months old and off the bottom of the weight chart, he took up a minuscule amount of room on the tight starched sheet. The neurologist asked if I had read the medical paper she had emailed to Dror. I felt ashamed but then angry. No, I hadn’t read it.Why would I? No way they would be diagnosed with this.
‘So, um, I was wondering . . .’ I bumbled ‘. . . maybe they will get stronger with time? Isn’t that possible in your experience?’
‘No,’ she said, the word puncturing my heart like a scalpel. ‘It’s not possible.’ She grabbed Lev’s arm. ‘See? They mostly have hypotonia, low muscle tone, but they also have hypertonia, which is spastic.’
‘Sorry,’ I said, my voice like the yelp of a stray cat that had been kicked. ‘What’s dystonia, exactly?’
She took Lev’s arm again. ‘See? The muscles move the wrong way.’ Another stab. I considered her statement. Often when Lev or Dov tried to reach for something, their hands would turn outward rather than inward. I did the movement, rotating my right wrist clockwise. It felt uncomfortable and unnatural. I dug deep for some courage.
‘But don’t you ever see children who recover from it?’
‘No. It’s a problem with the brain signals, not their muscles,’ she said.
I couldn’t hold in my feelings any longer. ‘Why wouldn’t you give parents any hope? It could really help a family, don’t you think?’
‘You don’t like me, do you?’ she said.
‘No, I don’t,’ I replied, in a rare moment of honesty. ‘But don’t take it personally.’ Somehow I managed an endearing laugh.
TEN
The test for BH4 came back negative and we were so relieved.
Along with my elation, I was furious at the neurologist, her excited anticipation about finding such a terrible diagnosis and her seeming lack of compassion for us. Dror cautioned me against letting my anger get out of control; vilifying her wouldn’t help me or the boys, we needed her expertise. But the fury took hold; in my inner world, she had acquired the supernatural power to destroy our lives with a single word: positive.
As I raged, Dror experienced his grief physically. He tried to run, only to find his legs weighted like concrete blocks. Each day he would set forth in his running shorts with hope and enthusiasm, only to find himself barely able to move. Finally, one day, dragging his heavy legs out into the hills of Beit Shemesh, he broke down and cried. When he got home we hugged each other for a long time. I remembered the days when his hugs would be strong enough to lift me off my feet and I had felt the exhilaration of contradiction: freedom and safety. We sat down in the morning sun that flooded the step outside our front door and I put my hand on his thigh. The taut mass of muscle was not only designed for running but had been created by running, ever since he was a boy. How much pain he must be feeling for his body to shut down like this. ‘It will be okay?’ I asked. I still needed him. Desperately. ‘It’s going to be okay? Right?’
‘Yes,’ he said, his voice weary. ‘I hope so.’
The doctor’s words about Dov and Lev not walking or talking were on auto-repeat in my head and I could think of little else. I shirked meaningful contact with Lisa and my other friends, and even struggled to communicate my feelings with Dror. Anger. Anger. I fantasised about sending a letter to the doctor once Dov and Lev were older and all her predictions had been proven wrong. It would be a slap in her face and I couldn’t wait.
In December my mother and father flew to the States for their annual holiday at the plush health ranch in Arizona. ‘Mum’s not feeling so great,’ Dad told me.
‘I’m not really able to comfort her now, Dad,’ I said. ‘I’m struggling myself.’ A ball had lodged in my throat. I tried to clear it, shake off the emotion. I didn’t want my voice to crack, to cry.
‘I know. She doesn’t want to be a burden to you. She didn’t even want me to tell you.’
‘Really?’ That was unusual. Secrets between Mum, Dad, me and Emile were unknown. If one of us knew something about one of the others, we all did.
‘Well, let me try and talk to her.’
‘Okay, hold on . . .’
‘Mum?’
‘Darling, so lovely to hear your voice. How is everyone?’ Her voice sounded muted.
‘All fine, Mum. How are you? Everything okay?’ I waited hopefully for her usual stream-of-consciousness list of activities, opinions and concerns.
‘Don’t worry, darling. I’ll be okay. Last thing I want is to add to your worries now. Just having a hard time, that’s all.’ I didn’t like the sound of that. She sounded different.
‘Okay, Mum.’ I would have to respect her wishes and stay out of this. ‘Well, look after yourself, have a good break, maybe you just need some down time, it’s been a hectic year, lots of travel and the gallery . . . If you need anything . . .’
‘Don’t worry, darling. Here, Dad wants to tell you something.’
Unable to let go of their worries, my parents shared their thoughts with the friends they had come to know over the years they’d been making the pilgrimage to breathe the clear desert air in Arizona. One of the regulars was a wealthy retired businessman who had turned his attention to philanthropy. He was a major donor to the largest paediatric hospital in the States. He promised to use his contacts to help.
Thank God, I thought when Dad told me over the phone. With his influence, we could bring in the big guns. Surely they could fix it. Suddenly I loved Americans.
Emails were exchanged and, back in Australia, my father secured a direct line to the head of a large US paediatric hospital. I was so pleased that Dad was officially on the case. He was a bulldog: stubborn, strong and powerful.
Soon Dror and Dad spoke daily. Endless conversations that I avoided, punctuated with hateful words like ‘brain development’, ‘grey matter’ and ‘permanent damage’.
But I reminded myself how lucky I was that the two beloved men in my life were taking full responsibility for all things medical. And they were getting on like a house on fire, although at slightly different speeds. My father’s dark mood, which had resurfaced since the troubles with Dov and Lev had begun, lifted ever so slightly now that he had a complex, challenging task to tackle. His goal was to compile a set of comprehensive profiles of Dov and Lev, complete with copies of MRIs, EEGs, blood results and doctors’ assessments, which could be easily couriered worldwide to leading paediatric experts.
‘Has Dror got the translation done yet?’ he asked every time I spoke to him. The doctors’ letters and other test results had to be translated from Hebrew to English, and Dror was looking for someone with the expertise to do it, and quickly. Dad was waiting to send off the files; every day without them he saw as a waste. I wanted Dror to move faster as well, and gently prodded him when I could. But I was loath to push harder. I wasn’t able to read anything in Hebrew and couldn’t tell one doctor’s report from another, so I was no help to Dror, who had a filing box overflowing with medical files. The last thing we needed was a fight.
‘I don’t know, Dad!’ I grizzled. ‘Ask Dror yourself.’ My conversations with Dad were purely medical these days and I was struggling with that.
Dad and Dror talked ten times a week.
‘Call your parents,’ Dror reminded me constantly. ‘They want to know how you are.’
But I didn’t. Couldn’t. I had nothing to say. Like Jack Kerouac said, I had nothing to offer except my own confusion.
Finally, Dror put together a comprehensive English profile on the boys, complete with DVD footage of their movement (or lack thereof ). I contributed a timeline of their development from zero to fourteen months.
I rang Emile—he was the only family member I could face talking to about the fears and doubts racing in my head.
‘Dad says you’ve hardly been calling,’ he said.
‘I just don’t have the strength to talk about it constantly
with anyone, especially Mum. Can you call her and say you’ve spoken to me?’
‘Yes, sure.You know she’s not doing great. Nobody wants to worry you but I think you should know she’s been in bed for days. Cancelled everything. Didn’t even give her speech at the opening last week. Literally bedridden.’
‘What’s wrong with her?’ I asked, shocked. This didn’t sound like her. Cancelled an opening speech? She would never do that.
‘Well, she’s taken the whole thing with Dov and Lev very hard,’ he said deliberately.
‘But she doesn’t even seem to think of them so much,’ I said. As soon as the words were out of my mouth, I knew how absurd they were. Just because she hadn’t shared her own inner hell didn’t mean she wasn’t experiencing it. How stupid I was.
‘She comes across as much more worried about how Jasmine is coping,’ I said, wondering how Emile saw it, what his perspective was.
‘No, that’s not true. It’s affected her very much. I’m worried; we all are, Dad especially.’
Shit.
‘Should I call?’
‘I don’t think she’s talking to anyone.’
‘Seriously?’
‘Look. You have enough to worry about. I’m just telling you because you should know. There’s nothing you need to do. Okay? I’m here. I’ll let you know anything more if needed.’ His reassurance felt good. I just couldn’t cope with another worry.
ELEVEN
An old school friend of my mother’s, Barbara, who had travelled from London, came to visit us. Mum had told her about Dov and Lev and their problems.
Lev reclined on my lap, sucking his dummy, and she stared at him.
‘Who does he look like?’ she asked.
‘Everyone says Dror. They’re like pale Drors.’ I tried to smile.
‘Are you looking at my hair?’ Barbara asked Lev as she touched her red curls. ‘Kids always love my hair.’
I didn’t want to tell her that Lev always gazed at the tops of people’s heads, scared that it was a sign of brain injury. ‘What does my aura look like today?’ I would sometimes jokingly ask him as he stared at my hairline. ‘Pink? Purple? Blue?’ And Lev would stare until I kissed his button nose softly, then his eyes would refocus on my face.
Barbara explained that, despite living in England, she was involved in an Israeli early-intervention organisation, the Schwartz Center. It developed and provided services for people with developmental problems, she said, and was considered ‘state of the art’ internationally.
‘Would you like me to arrange for Dov and Lev to go there a couple of days a week?’ Her accent was a funny mix of my parents’ South African and the Queen’s English.
She explained there was a day-care centre for special-needs children and that each child had a tailored program.
Still nervous about labelling the boys as ‘special needs’, I smiled cautiously.
We would have to change their physio and hydrotherapy schedules, coordinate Jasmine’s day-care pick-up, and get them there and back in peak-hour traffic. That meant hours of honking horns trapped between drivers screaming out their car windows at each other.
‘That’s incredibly generous of you,’ I said, ‘but I don’t know if we can make it work. We’ll try.’
Dror and I met the staff at the Schwartz Center without the boys. A woman with an American accent showed us around. What a relief: an English-speaker. The empty kindergarten room looked normal: pictures on walls, buckets of toys, miniature chairs and tables.
The staff seemed professional and nice, and there were all kinds of therapies on offer. Maybe it would help Dov and Lev to be in a social environment, given they didn’t have the opportunity to play or even interact with other kids their age.
Their first day soon arrived.
‘Shalom Dov, Shalom Lev!’ They were warmly greeted by a staff member, who smiled into their faces. Dov and Lev’s eyes were wide but they made no response.
‘Do they understand Hebrew?’ she asked me.
‘Uhhh, yes, maybe . . . I’m not sure. But their Abba speaks to them in Hebrew so it’s okay.’
‘Beseder . . . Come with me.’ She led the way into the crowd of kids and staff.
We sat in a circle. It was loud with the shrill voices of the staff trying to get the children involved, excited and participating. It was time for the ‘good morning’ song. Jasmine had the same one at her kindergarten, but there the similarities between the two places ended. Some children were screaming hysterically, while others sat silently, eyes moving in opposing directions, looking into the cosmos. What did they see? I hoped it was something beautiful.
I sat cross-legged next to Efrat and Lev, with Dov comfortably wedged in my lap. His head lolled back on my chest, his breathing soft, trusting. I hunched over and squeezed him tight, his soft honey curls brushing my cheek. If only I could pull him back into my body. Protect him inside me. ‘Mummy loves Dovy Dov,’ I whispered in his ear. He let out a sigh. His way of telling me he loved me. ‘I know,’ I whispered back.
I raised my head and looked around me. I saw arms locked in spasticity, facial muscles frozen in expressions I couldn’t read, wet dribbling bibs with colours too bright, thick glasses and leg braces. I looked away. Did Dov and Lev belong with this group of children? I knew they didn’t fit into the playground scene: toddlers digging around in the sandpit, learning to climb the ladder to the slide, their mothers waiting below; stubby fingers pointing at birds in trees as they shouted, ‘Mummy!’ As much as Efrat and I tried to prop them up, Dov and Lev’s floppy bodies couldn’t even manage the baby swing.
This scene would become crystallised in my mind, like the room of the pale-faced developmental doctor I first saw with Efrat. Other scenes from this traumatic day would be buried deep. These were children—innocent, good, uniquely beautiful. But they brought all my fears into stark reality. Or my grief. I didn’t know. All I could think, over and over, was: My boys don’t belong here.
A woman gestured to me from the doorway. I leapt up and stepped over the bodies to the door, cradling Dov in my arms. I motioned to Efrat to stay with Lev. We were taken just two steps away to the safety of the physiotherapy room.
Mats were stacked in a large tower and shelves contained balls, ropes and other devices. After six months of physiotherapy this was more familiar ground. The woman invited me to observe one of their sessions and I settled in with my back against the wall, Dov cradled to my chest like a hot water bottle to a sore stomach. I was so relieved to be away from the circle that my tense shoulders melted into the cool white concrete behind me. A little girl was brought in and placed on her tummy on a bright turquoise mat. She looked about four years old, older than Jasmine, but she had the physical abilities of a baby. The male therapist started the session. I forced myself to watch: This may be your future, Ondine. Better take your head out of the sand and see what it looks like. The little girl didn’t have the strength to push herself off her belly and the therapist was encouraging her to move forward.
‘Yofi . . . Od Kzat. Boy alai,’ he said. ‘Rosh gavoha.’ I’d already learned many common Hebrew phrases that physiotherapists used so I could easily follow. The little girl struggled with her task. Dov and Lev won’t be like that at her age, I thought. She’s hardly better than they are now.
After making my thanks, I seized the opportunity to escape at morning tea. I couldn’t get out of there fast enough. We raced through the winding corridors of the centre, past the sensory room with its psychedelic lights and furry walls, through the courtyard and out to the front desk. When I saw the exit sign by the large automatic doors, I felt like screaming, ‘Touchdown!’
On the way home in the taxi my head was spinning. ‘I don’t know if I can do this,’ I confided to Efrat, controlling my wavering voice. ‘They were the youngest there and didn’t really fit in. Maybe we can wait another six months.’
‘I thought exactly the same thing,’ she said.
We looked at each other and smiled.<
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‘I am so glad we are going home!’ I started giggling.
‘Me too!’ She laughed as we squeezed Dov and Lev to our chests and kissed their necks.
We sat laughing in the back of the taxi and I imagined the driver thinking we were escapees from an asylum.
TWELVE
It was a cool winter’s night in January. I pulled the doona tight and curled over on my right side. I squeezed the pillow that was lodged between my knees, a habit I’d developed when my gigantic pregnant belly needed support so I could sleep. I retucked the second pillow between my neck and shoulder and reached for my golden foam earplugs. Outside my bedroom window cars in Tel Aviv were still honking angrily. After Jasmine was born and I’d become an on-and-off insomniac, I had become addicted to the cocooning feeling of muffled sound. Not that this prevented me from hearing my children cry or Tigger and Ketem scratching at the door to come in or go out.
Next to me, still in his clothes, was Dror—asleep as soon as his head touched the pillow. He didn’t need the countless pre-sleep tasks, such as a glass of water, a wee, moisturising, reading, another wee and pillow adjustments, which had become part of my night-time ritual.
Dear God . . . I said to myself, eyes closed. Perhaps I should be kneeling at my bedside, like the small boy in my old Little Golden Book. If only the story was true: God whispers to us in our hearts: ‘Do not fear, I am here and I love you, my dear. Close your eyes and sleep tight for tomorrow night will be bright. All is well, dear child.’
Maybe I, too, would wake and all would be bright.
Suddenly my arm felt numb and I turned over to my left side, realigned the pillow and refocused. Dear God . . . Then another internal voice stepped in. Who are you praying to? Is anyone listening to you? You sound ridiculous . . . there’s no one there.
The Miracle of Love Page 10