Dov and Lev each had a walker. Sometimes they could toddle around in them, looking almost as though they were really walking, despite the bolts, straps and wheels. Almost.
A bicycle seat was lodged between their legs, to prevent them from falling vertically and in case their thin legs needed to rest. Two padded steel levers encircled their waists, and another two went around their chests.The levers were tied together with a buckle. On each side were two large wheels that came up to their waists, and in front and behind were four smaller wheels, like those on a training bicycle, to protect them in case they fell backwards or forward.
But there was also a white Pat Rafter-esque tennis elastic that confused the picture further. Looped around both forearms, the elastic prevented their muscles going from low to high tone when they tried to walk. Some might have said that Dov and Lev in their walkers wasn’t a pretty sight. But to me the picture looked different. Seeing how much the boys loved their walkers had transformed these ugly steel machines into something quite beautiful.
Lev’s walker was a bright shiny cherry red. On the day Denise visited, it was impossible to see past the machine to a walking boy. All Lev’s weight was on the bicycle seat. He flopped his body awkwardly backwards, his head resting on the steel supporting pole behind him. His mouth agape, he was drooling.
I had known Denise for nearly twenty years; we’d become friends at a time when a solid joint and some Monty Python were all we needed to have fun. The good old days. Now we were closing the gap on middle age, and rather than being surrounded by music, candles, wine and drugs, we stood in the kitchen surrounded by half-eaten Thomas the Tank Engine bowls of banana yoghurt and listened to the Wiggles.
Denise looked down at Lev and brightly asked, ‘How are the boys doing?’
Suddenly I saw Lev through her eyes: a disabled, speechless child in a large, yes, wheelchair-like machine. He was not moving. I looked over at her boyfriend. What was he feeling? Pity?
I didn’t know how to respond. My head was filled with a rush of sorrow for missed milestones and failed goals, and a kind of social shame that was hard to identify. I wanted to say how hard it was, how I longed to be able to report something tangible—‘They’re sitting’, ‘They said their first word’—but all I had was the intuition, the faith that something big would happen. I responded with, ‘Bright-eyed and bushy-tailed.’ Trite. I silently cringed and the moment was gone. I knew I would be awake that night thinking about and regretting the hollowness of my words.
The following Friday Dror still wasn’t home. I knew he was busy talking medicine, as an email had arrived the night before telling me to up Dov and Lev’s DITPA by two milligrams. They had recently had their monthly blood tests and Dror, as usual, had driven the vials of blood to the FedEx office so they could be couriered to Chicago and analysed for hormonal changes. The results had come back and we happily discovered that DITPA had successfully reduced the T3 in their blood. What no one yet knew, and could not test, was whether the T3 was going to the right place in the brain or just being delivered somewhere useless.
‘Can I take off my seatbelt now?’ I opened the car door and Jasmine, dressed head to toe in her current favourite colour, lilac, slid out. She hitched up the sparkly tights my mum had bought her before jumping over the big roots of the fig tree outside my parents’ house. Jasmine’s eyes were twinkling in anticipation of seeing her grandmother, Genie.
The two of us were having an early dinner with my family. Emile, Caroline and their two older sons, four-year-old Milo and two-year-old Zach, were going to be there. Their youngest boy, Cy, just a baby, was asleep at home with the babysitter.
Dov and Lev had gone to bed at home as well, Rachel staying on to babysit. Emile had suggested I bring them along to Mum’s; he was determined to maintain contact and regretful that he hadn’t managed a visit for a couple of weeks. He wanted a relationship with Dov and Lev, and had even bought a guitar to keep at our house so that when he came over he could play them songs. They loved to hear him play and sing and also to attempt strumming the strings themselves. Mum still struggled to find her groove with Dov and Lev, although she was starting to read them stories more often when she came to our house. She had also discovered they enjoyed playing with her heavy silver jewellery and she would put her bracelet on their wrists so they could feel the weight. They would move their arms up and down, enjoying the pressure as the bracelet slid and turned. Dad had also slowly discovered small routines that connected him with the boys. He pulled funny faces that prompted smiles and whistled tunes from his childhood.
A pang of guilt hit. Should I have brought one with me and left the other at home? That would be unfair. Should I have brought both boys with Rachel? But I wanted it to be just my family. Could I manage Dov, Lev and Jasmine alone?
Dov and Lev were a year older than Zach; if he was up, they should be too. Should, should, should. I reassured myself that they were exhausted at the end of their day’s schedule and taking them to dinner wouldn’t be in their interests.
‘Genie!’ Jasmine jumped into my mother’s arms.
Mum quickly adjusted her dangerous belt buckle and moved her thick silver bracelet up her arm so they wouldn’t interfere with the hug. We sat in the sitting room making ourselves comfortable in the deep armchairs, soft velvet in neutral warm chocolate and cream shades, evidence of my mother’s good taste.
After Jasmine got off her lap, Mum offered, ‘Darling, a blood-orange juice or I have watermelon or flavoured vitamin water?’
Zach was playing in the centre of the room with a make-believe doctor’s kit, taking our temperatures and doling out pretend medicine.
Emile joked that he wanted Zach to be a doctor and was giving him subliminal messages to accomplish the task. He would say the word ‘doctor’, then hug and kiss Zachy, hypothesising that the positive associations would work subconsciously when he was older. Eventually this would lead to Zach enrolling in medical school. Emile’s ambitious and somewhat neurotic Woody Allen tendencies were making us laugh as usual. He then turned to Milo. ‘Hey kiddo, what do you want to be?’
Air rushed out of my lungs. I had never, until that moment, considered how this simple question, famously asked by generations of parents and older relatives, would be denied to me and Dror, or rather, to Dov and Lev.
Would we ever be able to ask them that? Would they ever grow up to ‘be’ anything? When they were small babies I’d emailed my family, joking about their futures. Dov, I’d predicted, would be an accountant, as he was serious and methodical in his approach to bottle-feeding. Lev would be a poet because his outbursts of beetroot-faced screaming would fast fade into a gummy smile. He was in touch with his feelings.
Sitting in the living room, surrounded by laughter, in what should have been a lovely moment—a family dreaming of their children’s futures—hope was absent for me. I turned my ahead away, fingernails to my teeth, and embraced my self-pity for just a moment before pulling myself back to the room. Gratitude, Ondine. Gratitude.
‘Noodles!’ I called out.
‘What?’ Jasmine looked up from her game, her eyes the colour of moss.
I looked at her, so beautiful, maple-syrup sweetness emanating from every pore of her perfect body. A desperate wave of love and fear washed over me: Keep her safe, keep her healthy, please God, please.
‘What do you want to be when you grow up?’ I had to shout over Zachy’s head as he stuck a pretend stethoscope roughly in my ear.
‘You know, Mummy,’ she said, walking over to me. ‘I want to be a vet.’
‘An elephant vet?’ I teased her.
‘Mummmmy!’ she said as I grabbed her by the waist and gave her a hug, stealing a quick kiss on the nape of her neck, my favourite spot, before she wiggled away.
Then I remembered my elephant: giant, gentle, wrinkled, with leathery skin and fine long hairs. My very own Mr Snuffleupagus. The image had come to me when I had reflected on recent social gatherings. Dov and Lev’s problems were lik
e the ‘elephant in the room’: enormous, unavoidable, and yet everyone ignored it, including me.
I recalled how I’d stayed silent while Louise had talked about how great it was when children grow out of the toddler stage and finally become a little more independent. She had looked to me for agreement and I’d complied. Could I remind friends that, unlike theirs, my two younger children were not becoming, and might never become, independent? Would this make them feel uncomfortable? Must I allow normal conversation to progress and deny my feelings? Could I point to the elephant or did I have to ignore it for the sake of harmony?
Aware of Mr Snuffleupagus beside me, I decided to change tack, to share more information about my experiences and see what came of it.
The following week I arranged to meet up with Lisa. Time to be honest, I decided. When she asks you how you are, just tell it like it is. For once. I almost felt sorry for Lisa, as though she were about to become a victim of my crime. She sat across the table drinking her usual soy dandelion tea and innocently talking about her day.
‘I had to drop Amanda’s lunch at school, so embarrassing. I can’t believe Stuart forgot to pack it. Again! This week’s just been manic. At least Patrick finally got over his ear infection. Oh my God, he was up all night on Saturday. And then Amanda’s friend’s birthday party first thing Sunday . . .’
I listened with interest, though my life felt so different to hers. Still, our history together was long. I loved her and wanted the connection. It was unusual for us to meet one on one these days, as we were constrained by the rhythms of our young children. My conversations with her were often disjointed and unfinished. This wasn’t unusual for mothers; I had experienced it myself with Jasmine. Never a full sentence. But now I was in such a state of heightened sensitivity, the distracted exchanges were hard to bear.
‘How have you been?’ she asked after a few minutes.
Enjoying her full attention, I chose to open up. ‘So . . .’ I started nervously. Long pause. She waited.
‘I guess I’m pretty stressed. Dror and Dad are overseas again . . . meeting doctors.’
‘Oh, really?’ she asked.
Yes, bloody hell, really! I thought angrily, assuming she would remember that. Hold on. Had I told her? No. She couldn’t have known. Deep breath.
‘Yeah,’ I continued. ‘I don’t know how to feel, I mean, I hope they find something, some treatment for Dov and Lev, but it’s pretty unlikely that will happen. Certainly in time, anyway.’ I paused. The fear. The absolute terror. How to describe it to her?
‘The boys are getting older and it’s kind of a race against the clock,’ I tried, but it was too much for me. I looked away. My throat had constricted and I suddenly felt uncomfortable. ‘Dror gets so excited about all the medical stuff,’ I said, my tone more upbeat, ‘but I just don’t know what to think.’ Had I given her enough clues? Opened the vault just a fraction?
I hoped she would reassure me, understand me, but perhaps my voice had been too calm. I hadn’t cried. Hadn’t showed any sign of weakness or need for support.
Silence. She took a sip of her tea.
‘I don’t know what to say,’ she said. Her voice was kind, but she averted her eyes, and put her hair into a ponytail. I knew this was her ‘tell’, like in poker, a sign that she was uncomfortable.
Had the tables been turned, what would I have said? I didn’t, couldn’t know.
Sharing my innermost feelings was like reaching deep into my body, past the muscle and bones to the very centre. What I pulled out was so fragile, so delicate, and so easily squashed. Like a ripe blackberry. When I was younger, talking about my vegetarianism, my love for animals, I had felt something similar; sharing my innermost feelings only to be hurt that I hadn’t been understood. I would experience remorse for having shared, swearing never to do it again.
This was the same. I felt misunderstood by my friends and couldn’t understand why they didn’t, couldn’t read between my lines. But still, I had to keep trying; otherwise I would continue the family tradition, my emotions forever locked in the vault.
A few days later I waded once again into the shark-infested waters of sharing feelings, hoping that the generous glass of red wine I was sipping would loosen my tongue.
Victim number two of my emotional awkwardness was Louise. We were sharing holiday ideas and she told me she’d heard Club Med was a great family option. ‘Everyone at my firm says the kids just entertain themselves in the pool and the kids’ club is meant to be amazing. The parents can just relax,’ she said.
Relax? With Dov and Lev? Impossible. Couldn’t she see that? It was my elephant. This time I would be honest.
‘That wouldn’t work for us,’ I said. ‘Dov and Lev can’t swim independently. Dror and I need to hold them all the time in the pool. They couldn’t go to a kids’ club anyway; the staff wouldn’t know what to do with them.’
‘Oh really?’ she said, looking at me in confusion. She hadn’t understood.
What I should have said, perhaps, was that even the thought of Club Med frightened me. A highly unusual reaction to a holiday resort, I knew, but it was the same with every situation where I knew strangers would be faced with Dov and Lev. No one would understand them. Get them. Know them like I did.
With other children it was different.You learned about them through their outward signals. In early Christian theology this was called hypostases. Our inner essence, or ouisia, is expressed through these various hypostases. For children, this could mean reading them through the blankie they carried around, the clothes they chose to wear, their facial expressions, mannerisms, and of course what and how they chose to express through their language. Jasmine, for example, carried her soft toy bunny, ‘Bubby’, wherever she went, was obsessed with her striped black leggings and pink glittery shoes, adored puzzles and drawing, and liked to discuss fairies and mermaids. This gave her kindergarten teachers ample clues into her personality and topics of conversation if they wanted to engage with her.
Dov and Lev had their ouisia, and I could see it clearly. But they had few hypostases to help others know them. So, I projected, Dov and Lev could be ignored, abandoned, or even exploited, ridiculed, hurt . . . the list went on. All in the course of an afternoon’s playtime at Club Med. It saddened me terribly.
When I spoke to Louise, my voice should have broken. But it didn’t. I stayed strong. Always the actress. Can’t do this, I thought. Must wrangle back my emotions and return them to the vault. ‘So, did you get the speaker you wanted for your next event?’ I said, changing the topic.
Driving home afterwards, I felt the familiar pangs of disappointment and fought against my impulse to vow, to scratch in blood a promise on my arm like a tattoo, never to share another heartfelt thought with another human being.
‘They just can’t understand,’ Dror said gently as we got ready for bed.
‘I know . . .’ And it was true, I did know. But I so longed for it to be different.
What would I have done had the tables been turned? I wondered again. I wasn’t sure, I was in too deep to step out of myself. I had no ability to empathise with anyone else any more. I knew that. And yet I remembered how much my friends and I used to have in common. How much they cared about me; how they’d cried when I left for Israel, how they’d hugged me warmly when I got back, had invited and continued to invite me to places. And yet they didn’t understand. Couldn’t follow the trails of crumbs I was leaving, small signs of my pain, through the forest like Hansel and Gretel.
I had changed. Maybe my friendships were doomed.
I read in Changed by a Child by Barbara Gill, a book of interviews with mothers of special-needs children: For most of us the beginning is a traumatic and wrenching experience. Our insides are torn by such shock, grief, fear and sense of loss that it feels like death. Our very identity comes under assault as on every side our assumptions and expectations are turned on their heads.
This wasn’t something most people experienced. I needed to find wo
men I could relate to, share my deepest fears with, speak the same language—that of broken dreams, standing frames, dribble bibs, heartbreak and desperate hope.
I had searched for a support group for over a year, calling disability organisations, signing up to mailing lists, my email inbox filled with their updates and alerts: autism awareness parents’ night; submissions on a new disability policy; workshop for ADHD and behavioural problems; respite services for western Sydney . . . I scanned them all for signs of a community I could join, somewhere I would be seen and embraced.
Eventually I found a group for mothers of special-needs children in my area. But it was focused on autism, a condition so different to Dov and Lev’s, and I didn’t fit in.
‘I need other women who have gone through the same kinds of things,’ I told Dror.
‘Well, you know you can contact the other two families with kids who have MCT8,’ he said. ‘You could Skype the family in Toronto. I told you how nice they were when your dad and I met them on the last trip.’
‘No, no. I can’t. I just can’t,’ I stuttered.
I imagined having a mentor, a confident, compassionate lover-of-life kind of woman who could inspire me and alleviate my long list of fears. She would have an older child with developmental disabilities who was happy and thriving, and she would have found a way to maintain good friends and participate fully in society.
I knew that my anxiety about the future came partly from a fear of the unknown; how did families live with older disabled children? But it was also knotted with my sadness. No one ever told me that grief felt so like fear, C.S. Lewis wrote.
I also had many questions. Where did they put their wheelchair? What kind of car did they have? How did they lift their child in and out of bed, baths and chairs? What kinds of communication devices did they use if their child had no or limited speech? How did their other children interact with their disabled sibling? What activities did they do on the weekends? Had they kept their old friends or made new ones? Did their child go to a mainstream school or a special-needs school? Were they happy? Would they be okay? Would I be okay?
The Miracle of Love Page 21