NINE
One of the doctors’ visits we made during this time was to a highly successful paediatrician who was in his sixties. His South African accent reminded me of home, of my childhood doctor and my parents and relatives. His wife, acting like a personal secretary, came in and out of the room. She cooed at Dov and Lev affectionately, then busied herself collecting and replacing manila folders on his desk. I felt safe.
‘I can’t see anything unusual in their tests,’ he said. ‘Undress them and let’s take a look.’ He measured and weighed them, and checked their reflexes. ‘Okay. Let’s see.’ He wrote some notes and handed us a slip of paper. ‘A list of vitamins to add to their food. Come back in three months and I expect to see a lot of improvement.’
‘And give them chicken soup, every day,’ the doctor’s wife added as she returned to the consulting room.
Improvement. A lot. Did he say that?
‘Maybe he thinks they’ll be fine?’ I asked Dror in the car.
‘I hope so,’ he said brightly, taking my hand.
Giving Dov and Lev chicken was hard. Whenever I heard the word ‘chicken’, I saw a feathered bird standing in its own excrement in a closed barn deprived of sunlight. I couldn’t bear to cook it and had to enlist people around us to find free-range chicken to make into soup. Jasmine was a vegetarian and defied the fear merchants with her boundless energy, rosy red lips and accelerated development. Feeding Dov and Lev meat was an ideological compromise. I didn’t care. Soon they would be fine and could become vegetarian.
The next specialist was a paediatric neurologist, head of the hospital department. We had waited a month for this appointment. Despite the cocktail of vitamins, including iron and fish oil, and daily chicken soup, there had been no improvement. Dov and Lev’s heads still flopped to the side. Their coos hadn’t turned into babble, their feet and legs were stiff, their hands were in fists, and still they couldn’t bring them together. They couldn’t roll. Couldn’t sit. Couldn’t hold their bottle. Couldn’t bring their hands to their mouths. My worry had grown. Bigger and bigger until it became all of me. I was them. And they, me.
This doctor was a pale-faced elderly man with soft grey hair and a quiet voice. Surely he would know what was going on, with all that experience? How hard could it be? Efrat had taken Jasmine for ice cream. We carried Dov and Lev down spiral stairs from his lounge room to the basement.
‘Come in,’ he said, leading us into a mahogany room with floor-to-ceiling books and framed certificates on the wall.
Dov sat on my lap, my hands supporting his shoulders. The pale doctor inspected him. He held a red ring out to Dov, who made no movement to take it.
Who wants a boring ring? I thought in Dov’s defence. He would often take toys that I gave to him. But he was in his off mode: vacant eyes and unresponsive body. The doctor rang a bell behind his right ear but Dov seemed not to hear it. I was sure he’d just ignored it; who turns to see a stupid bell?
‘Mmm . . .’ the doctor grunted and returned to his office chair.
Dror passed the results from the MRIs across the broad table and the doctor read the handwritten reports slowly, asking us questions about hereditary family diseases.
‘The white matter may be slightly underdeveloped . . . but it’s hard to say for sure,’ he said.
We were ushered to the outside waiting room as he continued to study the papers. We sat on a couch surrounded by toy boxes. Eventually the doctor came outside, kneeled and looked deeply into Dov and Lev’s eyes. ‘Well, it’s unlikely that it’s genetic.’
I didn’t know if that was good or bad.
‘Their faces would show signs of disease, if so. They look like normal handsome babies.’
I smiled.
‘Cerebral palsy,’ he said. ‘Do you know what that is?’
Another doctor had mentioned it, but then discarded the idea.
I knew it described a group of conditions that affect body movements and muscle coordination, and that are caused by damage to the brain—usually during foetal development, birth or infancy. It was the most obvious possibility with twins. But it usually occurs only in one twin through a lack of blood in utero, an umbilical cord around the neck or cessation of oxygen. None of those had occurred with my pregnancy or the birth.
‘Well, it can be anything from mild clumsiness to complete disability affecting movement, intellect, speech,’ he continued. ‘Book them in for another MRI in nine months so we have a comparison. Come back in six months and we’ll see where they are.’
Yay! I smiled as we started the car engine.
‘I can handle clumsiness,’ I said to Dror. ‘May not be good for the soccer team though,’ I added, smiling.
‘Clumsiness is good,’ he agreed.
My parents returned to Israel. It had been four months since their last visit. I hoped they would gush with enthusiasm about how Dov and Lev had developed. I needed reassurance and believed they would see things I hadn’t noticed. But they said little when they arrived, complimenting only Jasmine on her intelligence, beauty and kindness.
Yet another specialist had been recommended to us. Mum said she would look after Jasmine; Dad wanted to join me and Dror at the hospital.
‘Come, Jasminnie,’ my mum said, turning the large silver buckle of her thick leather belt to the back so she wouldn’t hurt Jasmine as she carried her. Jasmine put her hands up expectantly and Mum whisked her away with a whoosh of her black skirt. ‘We have to brush your hair first. Do you want to wear your new shoes?’ Mum whispered to her with a kiss. She had plans to take Jasmine to the opening of a new museum.
Again, I felt a rush of gratitude that Mum was with us, that Jasmine was so loved, and a weight of guilt slipped off my shoulders.
I knew that when I returned home later I’d find some new item in the apartment: a shoe rack by the front door perhaps, or toy baskets in the play area, or a new vase filled with fresh flowers. Mum expressed her anxiety by shopping, organising and making pretty. Life and all its dangerous emotions had to be sorted into compartments. This was her way.
‘It is certainly interesting that the face is so long,’ said the young doctor a little too enthusiastically.
‘The’? This was my baby boy, not a ‘the’. I scrutinised Lev’s face and looked over at Dror. They looked the same to me. Dad, just arrived from Australia, sat next to us, his face pale, unshaven and newly gaunt. It reminded me of the time before Voiceless when ‘depression’ was whispered among our family. I couldn’t blame him. He’d bounce back like he always did, I told myself, after Dov and Lev had been diagnosed and treated and had duly recovered.
‘Perhaps it’s a sign of a rare disease,’ the doctor suggested while he wrote a referral for a muscle biopsy.
I looked at my father but he sat expressionless, all his normal vitality lost. Then he summoned the energy to ask the doctor questions. He wanted to check the various diseases and conditions that Dov and Lev might have. But they had already been tested for all of them. Dror and I knew the answers—the whys and hows—but I recognised that my father needed to hear for himself. Slowly, one by one, he went through his list. This was the first step in what would eventually become his dedicated job, one that would dominate his life and forge an unlikely partnership with his son-in-law: finding a cure.
Over a nine-month period, Dov and Lev had seen four paediatricians, a developmental specialist, four paediatric neurologists, a geneticist, a paediatric endocrinologist and scores of nurses with scores of tests. I had held their struggling bodies as they’d been poked with needles for blood; I had wrapped my arms tight around them as they’d had electrodes placed on their heads and bodies for an EEG to assess chemical activity in their brains; I had watched their startled tearful eyes slowly close as they’d struggled with a mask full of general anaesthetic and had been put into a closed coffin-like machine; and I’d sung lullabies to them as they’d lain on their stomachs waiting for the large needle of a spinal tap.
I felt unseen and
disrespected as we were ushered from specialist to specialist. No attempt was made to include me, the mother, in the medical process—to explain to me what was happening, to reassure me. I yearned for a kind word of hope, craving any reassurance like a drug. I would have bought it, false or otherwise. Instead I was shocked by the doctors’ coldness. Was this purely academic for them?
‘It’s disgusting,’ I said to Dror on the way home from yet another appointment. ‘They just want to discover some new disease and name it after themselves. Isn’t that what happens?’
‘Yeah . . . it’s very prestigious. But that doesn’t mean they’re not good doctors,’ he said. ‘It may even make them better, as they are objective and unemotional. They’re looking only at the scientific evidence, and they have to disregard everything else. Really, it’s working in our favour.’
‘No, it’s not,’ I said angrily. ‘They don’t care about Dov and Lev; they don’t see them as people. They just care about who diagnoses them first. I hate them. Hate them!’ My jaw clenched and I could hear my teeth grind as I waited for his sympathy.
‘It doesn’t bother me, it’s not personal,’ he replied with a sigh. ‘You shouldn’t let it affect you.’
‘I wish you could deal with them by yourself,’ I said, feeling weak and guilty. I need to be there, holding their hands. Toughen up, Ondine. It wouldn’t be fair to send Dror by himself. The doctors would ask where the mother was, and besides, it was too much for one person alone. But I wished, nonetheless, that I didn’t have to do it.
Stupid stupid doctors, what the fuck do they know? I thought, lying in bed each night. Tears had started streaming from my eyes; I didn’t actually cry, but it still made my pillow uncomfortably wet.
My parents flew back to Sydney, leaving us to the last appointment on our list. There were no other leads after this. She was a paediatric neurologist and had an excellent reputation.
With Jasmine at day care, Dror, Efrat, Dov, Lev and I went to the hospital.We were ushered into a room by a man who looked younger than me. ‘Who is this guy? I thought we were seeing a woman,’ I whispered to Dror, who shrugged his shoulders.
‘Can I speak in English?’ I asked as we sat down.
‘Of course,’ he said, the thick accent distorting the words into ‘oof kus’.
The guy scribbled notes in Hebrew as I answered the usual one hundred and one questions about my pregnancy and birth experience, then I asked him, politely as possible, if he was the doctor. ‘No, no,’ he muttered, his eyes on his paper. ‘She will see you shortly.’
We were led back into the waiting room where a woman in her mid-forties with short, wavy red hair and soft freckles greeted us with a smile. Yay! I smiled back, a nice friendly woman. Now we’re getting somewhere. We followed her into a large communal space in the paediatric wing of the hospital. Three or four other staff soon joined us and we sat on the floor. Sunlight streamed through the row of dusty windows in the 1970s high-rise. ‘You can put them down here,’ she said, pointing to a colourful carpet in the centre. How progressive, I thought. No examination table. No prodding and poking.
Dov and Lev wiggled their thin nappy-clad bottoms. They looked around curiously, making a good deal of eye contact. Eye contact! I thought. Pride washed through me and I looked over at Dror and grinned.
‘See how clever they are!’ I wanted to shout. ‘These aren’t brain-damaged children. They know what’s going on.’ They managed to move together and started to put their hands to each other’s faces and mouths. Everyone laughed at how sweet and connected they were.
‘They interact very well together, don’t they?’ the doctor said.
For an hour she watched them, asked us questions and talked to her colleagues. Much of the discussion was in Hebrew and I couldn’t understand it. People started to slowly get up and I realised that we were at the end. But what was the conclusion? Had it been discussed in Hebrew? I couldn’t tell from Dror’s expression. I imagined it might be something like: ‘They seem perfectly fine.’ I saw myself gasping with relief and perhaps shedding a tear or two of gratitude.
‘Of course,’ she would have continued, ‘they are a little weak and behind, but that is something very common in identical twin pregnancies. We see it all the time, didn’t your obstetrician warn you? Silly him! I’m confident that after six months they will be in perfect shape.’ We would leave the hospital, vindicated, relieved and immediately go out for a beachside celebration of hummus and chips.
The reality was markedly different. I was sitting cross-legged on the floor, giving Dov his bottle, when the doctor abruptly stood up to take her leave.
‘Before you go . . .’ I said, stopping her in her tracks. ‘What do you think? Can you diagnose them?’
She turned to face me with a cheeky smile. ‘It’s so much more difficult talking to educated, intelligent parents . . . I have to answer harder questions.’ I felt flattered, believing she was now going to explain to me the inner workings of a child’s brain and body. I felt ready. Explain away.
‘Don’t expect Dov and Lev will ever walk,’ she said.
Is this a joke?
‘Don’t worry,’ she added. ‘There are a lot of mobility devices available, aren’t there?’ The rest of her team nodded.
I hadn’t breathed before the man opposite piped up,‘Yes, yes.’ He was short and balding, his name and qualifications unknown. ‘There is so much new technology to help children who can’t talk, communicate,’ he added with enthusiasm.
Walk and talk. Don’t expect. The words pierced my eardrum, entered my body and branded my heart with fire. I shuddered inside. I looked over at Dror. He couldn’t help me now. No one could.
Dror and I smiled and thanked the neurologist before she left the room ahead of the rest of the team.
Efrat, Dror and I busied ourselves with getting Dov and Lev in the pram, down to the parking lot, into their car seats and back home. I said little to Dror. Maybe we would talk about it later, maybe not. I didn’t care. There was really nothing to say. I certainly didn’t want to talk about it in front of Efrat; I was angrily conscious that she had heard every word in what should have been a private moment. I knew of course it wasn’t her fault, it was the doctor’s. She should have taken us into a private room to make her ridiculous prediction, away from the crowd. So angry. I squeezed Dror’s hand hard, my fingernails cutting into his callused skin. He winced.
Later, when we talked, Dror and I decided to disregard the doctor’s words. Like me, he wasn’t ready to give up on his soccer team. ‘Let’s find a different paediatric neurologist,’ I suggested, cringing at the thought of ever having to see her again. But Dror reminded me not to take it personally. ‘Not personal? Is there anything more personal than this?’ I retorted.
‘She shouldn’t have said that,’ he agreed. ‘After all, she doesn’t even know what’s wrong with them, so how could she make such a remark?’
Eventually I agreed we had to go back to her: we had seen everyone else and she had an outstanding reputation for diagnosing difficult cases.
We also decided that Jasmine needed to be told what was going on. ‘I don’t want a house full of unspoken sadness,’ I told Dror. Honest communication had to be a better way. But she was still only three, and we didn’t want to traumatise her. I would introduce the concept, casually, as part of our day. I had always tried to have an honest relationship with Jasmine, including her in my thought processes. If I hadn’t slept, for example, I would describe the sleepless night and apologise in advance if it made me grumpy or impatient. If something great had happened during the day, I would tell her all about it, and encourage her to do the same. So we could have an open honest mother–daughter relationship, the kind I had seen on TV and always coveted. I was looking forward to being able to talk to her honestly as she grew older. Surely she was picking up on my stress anyway. I didn’t want her to think any of it was her fault, as children often do.
Later that afternoon I picked up Jasmine from day care.
We walked slowly down the winding grey alleys that bypassed the noisy roads, pointing at stray cats with big green eyes darting between rubbish bins. Summer had finally departed and with it the squinting light and the rancid odours of urine and rotting vegetables from the market. It was safe to meander.
‘Lollipop?’ I suggested.
‘Yay!’ Jasmine jumped, her wavy mop of brown hair flying up and down. I rummaged in my bag and found one. Her face lit up. She quietly sucked as we stopped to watch an army of black ants climb a concrete wall. I brushed a soft curl away from her face before it became stuck on the lollipop.
‘Mummy’s a bit worried,’ I said.
‘You know how Dovy and Levy are not so strong?’ I continued carefully. Would this be a memory branded onto her young brain? One that would take years of therapy to erase?
‘So?’ she asked, busy sucking the sweet pink ball with all her might.
‘Well, Mummy and Abba are seeing lots of doctors,’ I said, wondering if my voice sounded confident. ‘They are trying to find out why, so we can make Dovy and Levy stronger. How does that make you feel, Jasminnie? You can tell me.’
‘Mummy?’ Jasmine asked, looking tenderly into my eyes. This was it. The moment she would remember.
‘Yes, sweetie-pie?’
‘Is my tongue pink yet?’ She poked out her long pink tongue.
‘Oh. Um.Yes.’
‘Good,’ she smiled.
‘Jasmine?’
‘Yes, Mummy?’
‘Did you hear what I said about your brothers?’
‘Yes, Mummy, I know. They’re floppy,’ she said, her voice indicating complete disinterest. ‘Look at that big ant,’ she pointed. ‘I wonder where he’s going in such a hurry.’
The red-headed neurologist called and told us to come in. She was excited about a possible diagnosis. She explained to Dror that it was a rare metabolic disorder relating to the production of tetrahydrobiopterins (BH4). It led to severe physical and intellectual disabilities. To diagnose the condition she would have to perform an LP test, which meant another appointment at the hospital so fluid could be taken from Dov and Lev’s spines.
The Miracle of Love Page 9