‘Of course. We’ll make it,’ he said.
I loved him a little harder.
EIGHT
Once Dror arrived home we went into overdrive, finding specialists in paediatrics, neurology and genetics, and booking appointments for reams of tests.
‘Keep calm and carry on’ was a British wartime directive that had since become fashionable, appearing on coffee cups, tea towels and posters. And so I did just that. I sat serenely in cafés with friends. I ate sushi and drank red wine from the Galilee. I watched American TV and laughed at the jokes. I returned to my childhood state: a bottleneck of emotions. In the playground, pushing Jasmine on the swing, I chatted to other mothers, casually comparing notes—competing, as you do. I avoided taking Dov and Lev for walks in the pram in case someone commented on them or asked questions. When asked how they were, I said, ‘Great, thank you. How are yours?’
Only afterwards did I discover how much Dror was suffering as well. ‘In agony,’ he would later describe it. But at the time we were partners in battle. Doing what was needed. No time to talk. Nothing to say. Fighting shoulder to shoulder, together, against a faceless enemy. It was wartime, and only action, not talk, could save us.
As the medical appointments kept coming, the local community, who had been so fascinated by my pregnancy, tried to help. They would tell me how their niece, nephew, cousin, uncle had also been slow in developing. I relayed this information back to my mother. ‘The hairdresser up the road said her cousin also had floppy muscles, but she got stronger and caught up later, started walking when she was three,’ I told her brightly. ‘No, Mum, they’re not rolling yet. No, their necks haven’t improved very much. Yes, Mum, Jasmine is doing well. She’s fine. Oh, Mum, and the neighbour down the road told me that her cousin couldn’t talk until she was four and now she doesn’t stop. What, Mum? Efrat picked Jasmine up today, we had that follow-up appointment with the neurologist. Jasmine’s great, Mum, I told you.’
I knew Mum was panicking. She was struggling to ask about Dov and Lev. Forcing herself to talk about them. Her panic made me panic. And that was the last thing I needed. I had locked my suffering in the vault, just as I had learned from her as a child, in a manila folder labelled Open at your own risk. Bottling up emotion had always worked for me and I didn’t see a need to change.
Every cell of my being believed, knew that in time we would have a similar story to our neighbours’. I imagined laughing with Dror years later when our sons were regular able-bodied twins, ‘Remember when we thought there was something wrong with Dov and Lev?’ Then we would pat each other’s shoulders and sigh compassionately. Maybe this whole debacle would even bring us closer: ‘You were so strong,’ Dror would say to me; and I to him, ‘You were my rock!’ over some soppy theme music on the beach at sunset. Then we would embrace while Dov, Lev and Jasmine chased each other along the waterline.
After all, didn’t mother’s intuition trump all? Hadn’t I personally experienced how squashed they had been inside my tummy? With no room to exercise their muscles? This was why their bodies were weak. They hadn’t had enough room to become strong.
‘You wouldn’t find these kinds of crazy melodramatic doctors in Australia!’ I complained over dinner one night in a bustling Tel Aviv tapas bar, where we were dining with our neighbours, Debbie and Simon.
Contrasting it with the laidback Aussie mentality of ‘She’ll be right, mate’, I pontificated over some sautéed mushrooms how Israelis seemed particularly anxious and pessimistic and expected the worst. Most likely it was due to a mixture of continual wars with their neighbours, suicide bombings and post-Holocaust syndrome.
I took another sip of my drink. ‘Or too much friggin’ heat and black coffee, maybe that’s the problem.’
That night I went home, sad that no one knew me well in Israel. Suddenly I missed my friends. Dror fell asleep in his clothes. Instead of drowning my worries with reality shows on cable TV, waiting to give the boys their 11.30 pm bottle, I decided to email Lisa, Denise and Louise, my closest girlfriends. Lisa, a friend since university, was a stay-at-home mum. Her eldest, Amanda, was close to Jasmine’s age, and Patrick was only a few months older than Dov and Lev. She was a tall, quiet, earth-mother type with long, curly dark hair. Denise was an old school friend—short, blonde, alternative, outgoing and vibrant. She had a collection of rainbow scarves that she wore every day. She worked in event management, and had moved in with a charming chef she had just met. Louise had emigrated from the UK as a child and still had a strong English accent that made her sound like an authority on any subject. She was tall, olive-skinned and super-organised. A full-time corporate lawyer, she had a son, Jacob, who was slightly younger than Jasmine.
They would be angry that I hadn’t replied to their emails, or perhaps just wondering what had caused my silence.
Dov and Lev are having development problems, I wrote. I’m sick with worry and freaking out. Waiting for test results, and really hoping that they will be okay. I read it back and thought it too grim, deleting the sentence about worry. I remembered to ask how they were too; I didn’t want to be self-centred.
Later, concern flooded in and my mobile vibrated with calls and messages. Everyone said they were so sorry; sending love; don’t worry; hoping for the best. But if I was drowning, their messages were a lifeboat made of feathers. What did I want? Someone to fly to Israel and hug me? Cry for me? Cry with me? Their tears might have given me permission to shed my own. But my friends all had their own busy lives: work, toddlers, mortgages, problems . . . I understood. But I couldn’t bring myself to phone them back. To do so meant considering their feelings and owning up to my own. Complex. Exhausting. To call was to worry about how I sounded—strong, weak, needy—and how they responded—uncomfortable, awkward, caring, careless. And then there was how I responded to their response. I wasn’t capable of thinking of anyone’s feelings except my own. This state of self-absorption would last for a long time. Email seemed the best way to handle it. Later I would copy and paste a carefully edited message into four different emails.
Weeks turned into months and winter grew closer. We celebrated Dov and Lev’s first birthday in the park close to our house. Dror’s mother, Anita, came over from Los Angeles. How hard are you trying to appear positive? I wondered. We didn’t talk about it, which was fine with me. Maybe she had no words either. The party was at the same spot, next to the ice-cream shop, where we had celebrated Jasmine’s second birthday sixteen months before. Jasmine’s life had been transformed since then, and I would watch her closely for signs of unrest, anxiety, anger, something. But she seemed the same carefree child as ever. I was supremely grateful.
I held my camera gingerly, wondering which scenes to immortalise.
The other kids didn’t know how to play with Dov and Lev, who couldn’t lick or hold the ice creams we had bought. Long skeins of dribble hung from their faces as they were passed from person to person. Dror’s aunt put out her hands to take Lev. Her fingernails were painted with tiny pink flowers and adorned with silver sequins, a new Israeli craze. I handed him over. She cooed and tickled but he stared blankly at her animated face. I cringed with embarrassment, trying to help her, singing to make him smile. But he didn’t. This was his ‘shutdown’ pose—overwhelmed, unfocused, mouth slack, body soft and compliant—telling us, perhaps: ‘I’m playing dead, tell me when it’s all over.’ They reminded me of battery-operated toys; at times they could be so active and alive, and at others they were in stand-by mode, turned off to everyone and everything. Where was their switch, and how could I turn it back to ON?
At home, with me, they were switched on and we connected easily. Eyes focused, watching me, smiling at my silly games. Their eyes would widen like owls’ when I put a cardboard box over our three heads, slowly putting our miniature cave on and taking it off, repeating ‘light, dark’.
Once, before bathtime, when Dov was naked and on the way into the water, he kicked his legs forcefully and beat his arms, squawking li
ke a magpie as I held him. I screamed at Dror to come and look at his excitement, how he knew it was bath-time. That had to be a good sign. I was always looking for signs. With sparkly eyes and mouths open in enormous gummy grins, they would wake in the morning, delighted to see me. ‘Mummy,’ I would repeat again and again, touching their thin lips and bringing their fingers onto mine to feel the vibration of ‘M’.
My bond with them was strong as steel. Never would I have imagined that my all-encompassing love for Winnie could have been surpassed by my feelings for a child. And then Jasmine came and my love for her was like Winnie on steroids.And now, that crazy powerful love had grown again, tripled in size. It felt awesome. But different. My love for Jasmine seemed so uncomplicated in comparison. With Jasmine I was a doting mother, but with Dov and Lev a she-wolf. With a snarling growl I guarded them vigilantly from the faceless enemy that had cast a shadow over our lives.
Meanwhile, Dror and I kept up our busy schedule of medical appointments, averaging one per week.
My parents phoned often. I didn’t know what to tell them so I rarely returned their calls, opting for short text messages assuring them Dror and I were handling it all okay. I was always waiting for the next test result, the one that would say everything would be okay. But they knew better than to wait. We’ve booked our flight, Dad emailed. And soon they arrived.
‘We’re here to help,’ Mum declared, racing around the mountain of silver luggage on her airport trolley to smother Jasmine with kisses.
With my mother at her disposal, Jasmine seemed even more oblivious to the whirlwind around her. Hand in hand, they made excursions to art galleries and ballet shows, went shopping and indulged in sweet treats.When Dror, Efrat, Dov, Lev and I returned from doctors’ appointments, nappy bags spilling bottles and bibs, and our hearts full of fear, Jasmine smiled with delight. ‘Look, Mummy,’ she said, pointing at her hairclip with pink polka-dot ribbons. ‘And look, Mummy,’ as she wiggled her feet in new red patent-leather shoes embroidered with pink flowers. ‘We went to ice cream too, and guess what my new favourite flavour is?’
‘Halva? Pistachio?’ I joked, swooping her off the floor and hugging her tight.
‘No! Rainbow!’ she beamed.
I was grateful that my mother could shelter her from my anxiety and grateful, too, that she was pouring herself into Jasmine’s heart, like a jug of the purest, sweetest love.
The medical system is different in Israel. There is no central GP coordinating or making referrals. We made appointments with everyone we heard of who might be able to help, seeking second, third and fourth opinions with paediatricians, neurologists, geneticists. Our medical file grew from a folder into a box. Blood tests, waiting for results, taking results from one to another, writing notes, new names, new tests. We sat with specialist after specialist. I waited for someone to confirm what I knew. I was certain. This was just a glitch, a delay. But when the end of the appointment came and no reassurances were made, I found excuses.
I had recurring dreams in which Dov and Lev were talking and running. Everyone did. My father-in-law,Yaakov, visited and told me he’d had a hyper-real daytime vision of them chasing him along the beach. He said the last time he’d had a vision like that, it had come true. Dror, Efrat . . . they also dreamed of Dov and Lev, able-bodied and fine. I didn’t care if Freud believed dreams were merely the fulfilment of our wishes, devoid of any psychic content. Surely, with this many people dreaming the same thing, there must be some kind of universal consciousness being communicated. Surely our collective dreams wouldn’t lie.
‘You’ve seen lots of kids with these kinds of problems—floppy and stuff, right?’ I gingerly asked Meital, their twice-weekly physiotherapist. ‘Some of them end up walking, being okay, right? It’s possible, in your experience?’
We faced one another, each with a child in our arms on the multicoloured play mat in my living room. It was made up of large foam puzzle pieces.
Dov sat between my legs; I had one leg bent and the other stretched out to give him more stability. I held him gently by the shoulder, keeping him from falling forward. A brightly coloured rattle was placed right in front of him. He would have had to move his hand to the centre of his body to retrieve it. We were encouraging Dov and Lev to reach to their midline, the invisible line running down the centre of their bodies, dividing the areas under control of the left and right brain.The next step—to cross it. Crossing the midline was a vital developmental milestone, usually achieved when a baby started to crawl. Dov and Lev had never done this and our objective was to teach them how. It meant literally moving the right arm to the left side of the body or vice versa. We were also intent on them opening their tight little fingers to grasp a rattle. Dov’s hand inched closer but could not make it to the centre, stopping just short. The stupid midline, why was this damn thing so hard to reach? I scooped him up spontaneously and gave him a kiss.
‘Sorry,’ I said to Meital, quickly putting him back in position while waiting for her to answer.
I had come to expect all Israeli women to be warm, effusive, affectionate and dramatic. Certainly all the women at Jasmine’s kindergarten fitted that bill: running at the children with bear hugs, squeezing cheeks and using ‘chamuda’ or ‘darling’ at the start of each sentence. Meital, with her long, wavy brown hair, dark Mediterranean skin and thick accent, was more Anglo in character than most. She expressed herself cautiously and focused on the physical task at hand rather than explaining, or educating or reassuring me.
‘Children need a huge amount of strength as well as coordination and a combination of gross and fine motor skills to be able to walk.’ She smiled kindly, gauging my response. ‘Let’s see if we can get them sitting . . . or if they start crawling, that would be a great sign.’
Fuck you, I thought.
My parents left after three weeks. They had to get back to their lives and in many ways I was relieved to focus solely on the tasks at hand. It had been hard to reassure them, and I could sense their anxiety rising, my mother’s pitch heightening a little when she spoke of Dov and Lev, and my father’s eyes glazing over when he lay on the couch in the mid-afternoon and fell silent.
I had to return to my computer, too, to address the unanswered emails. Each week I attempted to keep up with Voiceless’s activities and provide feedback, only to fall further behind. Correspondence from friends and family also went unanswered.
When had Lisa last emailed? I couldn’t recall. Oh no, there were two messages I hadn’t responded to: the first wishing Dov and Lev happy birthday and attaching a picture of Patrick at his second birthday party. Dov and Lev appeared so pale compared to this healthy, robust boy, a blue birthday hat on his head, playing catch with his dad in the park. How I wished Dov and Lev could hold a ball. Just hold. But they couldn’t even bring their hands together.
Be happy for her. Be happy. Look at her beautiful child. I was happy. But so unhappy in myself that expressing happiness for someone else felt false. No one would accept this self-absorption, best friend or not. No one could understand this pain.
Sorry I haven’t had a chance to call yet, I wrote back.
Be positive.
The boys are happy and sweet. No, be honest, you owe her that.
Seen four specialists including a team of neurologist/metabolic/ geneticists.
Maybe a sense of humour? An exclamation mark is needed.
All their suggested diagnoses contradict one another!
More honesty.
I don’t need to tell you how hard this has been—I’m sure you can imagine.
Could she imagine? Could anyone? I didn’t know. On the one hand, I hoped so. I was lonely—the existential kind of loneliness when one is surrounded by people yet still alone. Dror, my parents, Efrat . . . they were all there, but this was a solo journey. Dror and I were still fighting shoulder to shoulder rather than face to face. Perhaps you can’t defeat an enemy, faceless or otherwise, any other way.
To have a friend willing to get
inside my head and identify, empathise, would be nice. But then I would have to open up.To share. My dark world of pain had no room for anyone else. And in any case, I was still that little girl who couldn’t scream in the park. My vault was shut.
Don’t want to be a Debbie Downer. End the email on a positive note.
I just hope they keep getting better and we can put the whole experience behind us soon. Lots of love, speak soon.
My mother’s calls went unanswered, or I left messages, short and abrupt. Again, I knew she wanted me to talk to her. She was worried. Fretting. But I couldn’t think of a single word to say.
On one occasion when she rang I reluctantly picked up the phone. ‘Hi, Mum, how are you?’
‘Such a busy week, oi!’ she said. ‘The opening went well, hundreds of people packed into the gallery, fascinating speech by the minister on the convergence between culture and . . .’ She was talking at a million miles an hour, her usual sign of discomfort.
‘But enough about me. Tell me how you are, darling. What’s happening with the boys?’
‘Well, it’s been hard . . .’ I began.
I probably should have started crying then, given her an opening to support me. But my throat was tight and my eyes dry.
‘We’re now waiting for the test results,’ I continued. ‘They said they’ll come in another few days.’
‘Good luck, darling,’ she said.
‘Oh, thanks, Mum,’ I said, knowing I had missed my chance of a real connection.
‘And how is my sweet Jasminnie? I’m missing her so much.’
‘She’s fine. All well. But I better get going, not the best time to talk as—’ ‘Do you think Jasmine will talk to me on the phone?’
‘She’s not with me right now, maybe tomorrow, okay?’ My tone was tinged with anger. But unjustifiably so. I hadn’t given her a chance, or any clue that I needed her support. But I did. I just couldn’t say so.
The Miracle of Love Page 8