The Miracle of Love

by Ondine Sherman

  My arms stopped quivering and I found new strength.

  ‘Lying on your back, allow your knees to fall out towards the mat,’ the teacher said.

  My eyes started stinging and my throat constricted; I released the tears, safe in the darkness. A deep sadness wrapped my body like a blanket. There was so much sadness inside of me.

  Walking towards the car afterwards, I realised my arms were relaxed by my side, my shoulders free from tension. I wasn’t biting my cuticles, making a fist or repetitively pinching the rolls of fat on my stomach like I did at the end of training.

  I felt strangely quiet, whole and beautiful.

  TWENTY-TWO

  Without the diversion of Voiceless, I moved quickly through the stages of grief, from denial to anger.

  Thirsty for time alone, I had no interest in socialising. But I forced myself nonetheless: play dates and weekend brunches, faking it through conversations, tired of being disappointed that no one understood what I was going through; saying just enough; pretending to be the ‘old me’. I didn’t like the new me. Who would? She was a downer.

  Why me? I silently screamed in bed one night. I sat up suddenly, unable to breathe. Dror was playing his usual Wednesday night indoor soccer and I was alone in our bedroom. I looked at the monitor on my chest of drawers—no flashing red lights, the kids were all asleep.

  I’d been singled out: unplanned pregnancy; twins; genetically identical; rarest genetic disorder; no cure. Bang! Life irrevocably changed.

  Is this some kind of coded message from God, the universe? I thought. Hadn’t I been good enough? Kind, loving, fair? Had I lied too much as a teenager, been too uncaring to friends and family?

  I guess I didn’t see a life spent caring for disabled children as my destiny. Yes, I had always felt compassion for the underdog, but I had romantic aspirations: adopting orphans from Africa and living in a wildlife sanctuary rehabilitating baby elephants.

  I had never met a disabled person before and knew no one who had experienced these challenges. The closest I had been to disability was when I was six years old and used to watch an older boy run around the school playground, freaking out the other kids by taking his prosthetic leg on and off, laughing. I thought he was pretty strange but also amazing and brave.

  Where are all the disabled people in Sydney? I wondered. I never came across anyone, never, ever. I had no idea what their struggles were, what kinds of challenges they faced.

  Give me something, a sign to know that you exist, God, I pleaded.

  Nothing. Who was this ‘God’ character anyway, was there really a divine plan?

  I had pondered the God Question for more than a year already. Nothing made sense.

  If there isn’t a God then this is nothing more than a random accidental glitch in my genes, I thought; but that felt like such a depressing view of the world and it saddened me to my core. I wanted the world to make sense, life to have a greater purpose.

  I started to read late at night. One book led me to another. I read Freud’s belief that neurosis is the refusal to experience one’s own suffering, and the Buddha’s teachings that, in order to be free, one must accept, even embrace, suffering.

  I identified most with what C.S. Lewis wrote, grieving for his dead wife: Aren’t all these notes the senseless writings of a man who can’t accept the fact that there is nothing we can do with suffering except to suffer it?

  A 1973 German treatise on Judeo-Christianity called Suffering by Dorothy Sölle was stuffed into my mailbox one day. Had I ordered this? I couldn’t recall. Clearly I had become an Amazon addict. The book began as if the author had read the questions of my heart: To this day, people continue to ask questions that can neither be answered nor dismissed: Why must we suffer? Can pain possibly have any meaning? She delved further, asking: Should one learn from suffering, as antiquity and the Judeo-Christian tradition urge? Is that even possible? Does our culture deny the value of suffering? Her enquiries continued over several pages: Is a guarantee against suffering worth acquiring at all costs? Is it possible to integrate the manifold forms of pain into a lifelong process of learning? And why is it that some suffering strikes us blind and deaf and leaves us mutilated, while other suffering enriches our life?

  That was a long list of questions.

  Perhaps, I thought, this is why I didn’t know what to do once suffering hit me; I had no role models, no template apart from faking it with a smile. My mother dealt with her suffering by suppressing it. She had told me many times she couldn’t have coped any another way. ‘I put it in a room, closed the door and locked it.’ That’s what I had been doing. It felt natural.

  But intuitively I knew I couldn’t continue like this. Probably because my mother had so many fears and compulsions. Anyone would recognise that these were ways to control her anxiety. But if to close, lock, suppress and hide was unhealthy, what was the alternative? To express, cry, release, wail on friends’ shoulders, my snot in their hair, scaring Jasmine and too emotionally weak to help Dov and Lev with their therapies?

  I started a weekly evening class on Jewish history, but the lessons didn’t answer my questions: Why me? Will they be okay? The teachers seemed like normal, approachable people. I would approach them after class.

  Could Devorah or Shlomo really tell Dov and Lev’s future? I hoped the teachers could tell me if foretelling the future was considered possible in Judaism, or even a part of Jewish cultural history. If it was indeed legitimate, it would be cause for celebration, as they had both said Dov and Lev would be fine, they were not ‘special souls’ destined for a life of disability, they would walk and talk. I wanted, desperately, to believe this.

  But they told me that there were no longer prophets; that this period finished after the destruction of the First Temple.

  ‘Well,’ I said, deciding to come clean, ‘I saw two people in Israel and asked them about some problems I’m having. Is there any reason to believe what they said?’

  ‘These charlatans give people hope, not truth,’ they said, shaking their heads.

  I went to see another rabbinic guru speak at a synagogue. The rabbi talked about faith in God and afterwards people lined up to receive blessings. ‘For my children, who have developmental problems,’ I said when I got to the front of the queue, my voice wobbling. He suggested I buy his book about prayer, and his CD to play to Dov and Lev, both on sale at the counter. On the way out I picked up a flyer: The Holocaust and Why Bad Things Happen to Good People, a series of evening classes run by the Jewish Learning Institute. Now this sounded interesting.

  ‘Please come with me,’ I asked Dror. ‘Pretty please.’

  He had had his fill of religion and was placing his bets on science. ‘Okay,’ he grunted, distracted by a soccer match on TV. I knew he was doing this just for me.

  On the first evening we ended up in a basement room that held about eighty people, sitting in rows. Rabbi Milecki stood at the front. Then he began.

  ‘For the atheist, evil may be unfortunate but it cannot be any more disturbing than a kill in the African savannah where only the fittest survive. In a world without God, the law of the jungle prevails.

  ‘To the materialist, the question “Why did he die so young?” is easily answered. His genes were faulty. A virus invaded his body. The car was out of control. He happened to be in the wrong place at the wrong time.’ The rabbi stroked his beard.

  ‘It is the one who believes that God created controls and oversees the world who really has a problem. “How could God allow this to happen?” he cries.’

  Rabbi Milecki paused for a long time, the questions hanging in the air. I was so desperate to hear his response, to have my burning question answered, that I could hear my own heart beat. If there really is a God, is there a point to all of this suffering?

  ‘There are three foundation statements about God in the Torah: God is all-powerful. God is kind and loving. God knows everything. If you take away one of these statements it would be easy to explain why suff
ering falls on the innocent.’ He buried his hands in the pockets of his black suit pants.

  ‘Let me explain. If God knows everything and is kind but not powerful, he would know and care about the suffering but wouldn’t be able to do anything to stop it. If God is powerful and kind but doesn’t know everything, he would care about the innocent and be able to do something to help but he wouldn’t know who was suffering.

  ‘If God is powerful and all-knowing but is not kind, he would know about the suffering, be able to stop it but wouldn’t care enough to do so.’

  He paused, looking slowly around the room.

  ‘Senseless suffering is a contradiction of these three statements. How do we explain it?’

  The rabbi then pointed to a book, Why Bad Things Happen to Good People. Its author argued the case that God is kind, all-knowing but not powerful enough to stop all suffering.

  ‘This is not Judaism.’ His voice became louder, angry. ‘The three foundation statements are inarguable; they are the basis of a five-thousand-year-old faith and grounded in all religious texts, from the Torah to the Mishnah and the Talmud. We have to accept these three foundations as part of our belief in God.

  ‘Then how,’ he posited, ‘can we explain these unexplainable phenomena?’

  Yes, yes, get to the POINT!

  ‘Some may answer that suffering is a form of punishment for sins we didn’t know we’d committed.’ He started to pace up and down. ‘Others argue that what seems bad to us is in fact good in the scheme of things. Many believe that those who suffer in this world will be rewarded in the next. Others are convinced that although one’s body may be suffering, the soul is purifying.’

  So? And? What’s the answer? I couldn’t imagine what he could say to answer this seemingly unanswerable question.

  He paced up and down at the front of the room. ‘The real answer is . . .’

  I kicked Dror and raised my eyebrows.

  ‘There is no explanation,’ said the rabbi. ‘It is beyond our ability to comprehend God’s ways; our minds are finite and he is infinite. Sometimes things become clear to us in time and suffering does lead us to become the people we are supposed to be. However, sometimes this does not feel like the case.

  ‘You cannot say to the parents of a child who is dying of leukaemia or who has watched them being beaten and starved in concentration camps that their experience is making them a better person.’

  I nodded silently.

  ‘They are innocent and they are suffering. No explanation will be useful to them; in fact, to rationalise someone’s suffering by saying it is God’s intention or it is for their own good is a terrible thing and goes against the tenets of our religion. What Jewish law requires is empathy, not explanation.

  ‘What can we do with our suffering? We have every right to get angry with God; to, like Moses and Abraham, scream and shout at him to end our suffering. But at the end of the day, we must make choices in our own lives either to turn the pain into despair or to mould it into something worthwhile. This is, in fact, the only choice we have.’

  The class was over, and Dror and I walked outside onto the street. A car drove by, its headlights blinding me momentarily. I wrapped my scarf around my neck and looped my arm through Dror’s.

  ‘So there is no explanation,’ I said quietly. ‘That makes sense.’ And it did. So much more so than all the books I had read and everyone’s attempts at advice. I felt calm and whole. Suddenly I noticed I was breathing freely.

  TWENTY-THREE

  Dov and Lev were growing. Their limbs had become long and thin and their feet dangled over the bottom of their pram and further over the edge of the change table. Unlike other three-year-old boys, they were light and thin, with no muscle mass in their thighs or bottoms. Pants fell off their tiny waists. Still, their dimensions were large, and I happily bought shirts with tags saying 3yrs, knowing they would fit.

  Playgrounds and parks had now become a big challenge. Holding them up to equipment while balancing and supporting them had become harder. Sitting on the seesaw was dangerous, given that their hands couldn’t maintain a grip around a steel bar, especially two hands at the same time. Their bodies flopped over the bar and although I tried to get the balance right, they would inevitably knock their heads. I could lift them up onto the top of the slide, but I struggled to hold their weight up there, and helping them to slide down smoothly required a diagonal reaching that strained my back. At the bottom they smiled, thrilled by the movement. ‘One more time,’ I would say, feeling guilty.

  Often Dror or I tried to play soccer with them; holding their underarms and with bent backs, we swung their legs to kick the ball.

  ‘Eehuk,’ they said as they quickly inhaled air, grunting—their sound of complete happiness. Their faces beamed as the ball rolled away, while their soft dangly three-year-old legs kicked ferociously in space, wanting to run after it.

  Soon, however, my back would start aching and I couldn’t sustain the activity. As I turned them around, away from the ball, their legs and faces fell with disappointment. I felt guilty and useless as I sat down with them on my lap, cuddling them protectively to my body, fingers finding a ticklish spot to bring back their smiles, while they eventually returned to silently watching the world around them—my friends’ children and my nephews close in age running, climbing, playing, shouting, whizzing on bikes, scooters and skateboards . . .

  Why didn’t playgrounds have equipment for disabled children? In fact, there were so many areas of our community that I couldn’t access with Dov and Lev, and I was beginning to feel angry. Australia was a rich country and supposedly caring for the disadvantaged, but I didn’t see any signs of that wealth or concern. Dov and Lev were not included. If I had the energy, I could write a hundred letters of complaint. We had money, thankfully, and could afford the tens of thousands of dollars for equipment like walkers, standing frames, extra-supportive high chairs, leg braces and bath seats. With barely any government support, how did other families manage?

  It was also impossible to find toys that allowed children like Dov and Lev, with fine motor problems, to play. I would find myself staring with a heavy heart at shelves filled with hundreds of colourful objects, none of them suitable for my playful boys to use. The pegs on puzzle boards were too thin for them to grip; they needed thick solid objects to grasp. Other toys posed the opposite problem: too big for them to pick up with just one hand.

  I started to notice everything that was inaccessible for wheelchairs; I wanted to prepare myself for the ‘W’ word, which I still could not say out loud. But how could I prepare when footpaths on our street, local shops, my daughter’s school, planes and even the new garden at their local kindergarten were inaccessible?

  I had been on my break for three months when suddenly it was the Easter school holidays and Jasmine was sharing her time between my mum and me. She was still a happy, energetic and enthusiastic child, getting excellent reports from school, and socially adaptable. She also had a quiet, solitary side, relishing staying at home in her pyjamas and drawing for hours—scores of detailed images of happy dragon families, or underwater scenes of mermaids and fish. One picture made me particularly happy; it was of our family, with Dov and Lev smiling and standing in their walkers, big wheels on their sides. She seemed so well adjusted and I vowed to count my blessings each day at our extraordinary good fortune.

  ‘We’re going for a picnic at the river,’ said Louise one Monday evening after I’d actually picked up the phone.

  ‘A whole bunch of my friends have set up camp there . . . It’s a beautiful spot, family friendly, heaps of kids and a safe riverbank where they can run around. Do you want to come?’

  Run around. I cringed. How could she say that? But Jasmine would love it and I felt tired of my negativity, all my excuses, all my worries about the hardship of including Dov and Lev. Perhaps my time off had given me a boost: I heard myself agreeing.

  ‘Dror?’ I called in the direction of the office. ‘Do you w
ant to go on a picnic on the long weekend? With all the kids? By the Hawkesbury River?’

  No answer. I walked closer and heard his voice. On the phone.

  ‘No, I haven’t heard from him yet, I cc’d you on the email . . .’ Must be a conversation with my father.

  ‘It’s imperative to have him there,’ he continued, ‘the research looking into IPS modelling. No, not the engraftment. Right, he’s the one doing the disease models . . .’

  They were talking a different language, full of medical jargon. Dror was reading ferociously about adult stem cells and a library of hundreds of books, articles and papers from scientific journals had quickly grown in our home office. Bills were hidden underneath, left unpaid. Dror had stopped accepting that doctors knew everything and was attempting to become an expert himself. He learned everything there was to know about Dov and Lev’s condition, flew to conferences and tried to link their particular disorder with the latest developments in stem-cell research. He and my dad became thick as thieves, talking daily about possible researchers and potential avenues for exploration into cures.

  I didn’t understand most of it.Which was just the way I wanted it in fact. It was hard to pinpoint exactly why I was so reluctant; perhaps because I hated hearing Dov and Lev spoken about as medical cases and I was fearful of stepping onto a rollercoaster of hope. I knew Dror and Dad were discussing the upcoming conference in the US: twenty researchers flying into California to discuss the latest findings on the genetic condition. My father was now funding components of three different research programs. The conference agenda included the latest research into DITPA, MSC stem cells, drug screening, TETRAC/TRIAC, drugs for movement disorder, as well as gene therapy. All the researchers gave their time for free, with my father paying for airfares and accommodation. Another family was also flying to the US for the conference, their child one of the few in the world with the same condition. I closed the door and walked away.