At three years old, my boys are so sweet and lovable, but what about later?
‘Aaaghh,’ I sobbed, allowing myself to see the worst outcome: my adolescent boys silently drooling in wheelchairs, side by side.
I imagined faceless crowds pointing, staring, judging and pitying. After crying hard for a while, I felt angry and disappointed in myself that I could let my life and happiness be ruled by others. What had become of me? Shallow and vain, that’s what. Caring about what others thought. How pathetic.
Number two. I talked to the ocean about my grief over the loss of freedom to travel, a loss of adventure and spontaneity.Travel had brought me and Dror together. We were at our best when free, on the road. There were so many places I still wanted to go.
Travel, I’ll never travel again. My toes kicked up the sand angrily, making the water cloudy. What a First World problem, princess, a little voice in my head said. Geez. Travelling was a luxury for most people.
But I had fallen in love with Dror while travelling and it was still our ultimate expression of freedom. I’d always thought I would show my children the world, how people are essentially the same, no matter where they come from. They would see that cultures are unique, complex and rich. They would learn that dire poverty is everywhere and, just as my mother showed me, they must never forget how privileged they were.
‘Don’t be stupid,’ said the sea. ‘You couldn’t have travelled anyway with three kids. Who are you kidding?’
It’s true that I was blaming the disability for too much. Most of my travel plans would have been postponed until the children were older, but then again, friends of ours had taken their young children searching for pandas in the Chinese mountains and I had been jealous. I remembered that months earlier, sick of my whining about travel, Dror had suggested we leave the boys at home with a nanny and take Jasmine on shorter trips so she wouldn’t miss out. At the time the guilt at the thought of leaving Dov and Lev was so overpowering, I hadn’t even been able to entertain the idea.
My toes squelched in the sand. I felt momentarily self-conscious, talking out loud like an asylum inmate. I was doing what my mother had always told me not to do: opening the vault of dark emotions. Had she been right?
Number three. ‘I have no privacy, my home will never be my sanctuary,’ I whimpered. I was grateful to have a nanny and many therapists bringing extra hands, expertise and fresh energy. But the feeling of intrusion was painful.
The sea whispered back. ‘Isn’t a loving, happy, joyful house the most important thing?’
‘Yes,’ I said. ‘Yes, it is.’ I thought for a moment.
‘Talking about love,’ I said to the sea, ‘what about my friends, huh? I don’t think I’m going to keep them much longer. I’m so self-absorbed that I can’t be a good friend. Here I am in Thailand with Louise for her birthday and I can’t even have a laugh with her. No one is able to give me what I need . . . I don’t even know what that is. What do I need from my friends?’
More than a year had passed since we had returned to Sydney and still I didn’t know what to share, with whom and how much. Friends had tried to include us back into their social calendar.
‘Meet us for a harbour kayak on Sunday? The kids can swim off the boat,’ Louise had said.
How would Dov and Lev manage on a kayak? I’d thought, but didn’t say. They couldn’t even go in the water with floaties. Life jacket or not, if the boat tipped, they would drown.
‘Come with us next weekend, we’re going to pick apples with the kids, Jasmine would love it,’ Lisa had suggested.
My back would kill me at the end of a day holding Dov up to reach apple branches. Dror couldn’t manage both of them. But if we left them in the pram, it would be unfair. And Dov and Lev would be miserable.
‘A bunch of friends are meeting for a picnic at the park, there’ll be heaps of kids,’ Denise had said, inviting me to come along.
‘The boys can’t sit on the grass and play,’ I didn’t say. And to bring their seating equipment would be hard as the car park was a ten-minute uphill walk from the grass area.
I couldn’t share these thoughts with friends. Could barely get to grips with them myself. Yes, Jasmine deserved her own time, when she wasn’t restricted by her brothers’ inability to participate in ordinary social outings. But how could I leave Dov and Lev at home and be out having fun with her?
‘You’re right,’ I said to the sea, ‘my real friends will ride this wave with me. Stay with me despite the odds.’ On the other hand, I had a lot of work to do on myself to learn to be honest and let them into my struggles. How could they know what was in my head?
By issue number seven or eight I had run out of fears and tears. The sea had pulled me in and wrung me dry. Dusk descended and the water turned from blue to a cool black. I knew I needed more of this: more conversations with myself.
I prodded the skin under my eyes; it was puffy. I had never been an elegant crier. I started swimming parallel to the beach to give my swollen face time to deflate before I returned to my friends. Slowly I waded through the shallow water and onto the sand. In the dimming light, and without my glasses on, I could barely make out the shape of my sarong. With fingers wrinkled like raisins, I dried myself, carefully wrapping the fabric around my black one-piece bathers to hide my twin-stretched deflated-balloon belly.
My three bikini-clad friends were still by the pool and greeted me warmly, trying to hide their curiosity. ‘You’ve been swimming for aaaages. All okay?’
‘Sure. The water’s so beautiful I went for a long swim.’ I smiled. I didn’t feel like sharing. Not yet. Truth and honesty could come later; I was too exhausted now. I plonked myself down next to Louise. ‘Maybe I’ll have a drink after all.’
NINETEEN
I was back at the Voiceless office every day. My father and I discussed the bigger strategic decisions and I was left to sign off on everything that left the office: letters, newsletters, government submissions, sponsorship proposals, replies to the public, memos on new ideas, content for the website. I read ten daily news updates on factory-farming issues from non-government organisations, government and world media; free-range egg sales were up, welfare legislation had not passed in state parliament and beef production was being linked to climate change.
A journalist from the Australian contacted me. I had been nominated by Microsoft and News Limited as one of Australia’s top ten community leaders. There would be a ceremony at Parliament House, she said. Could I send her a photograph for the profiles in the paper the following week? I was flattered but worried about by being in the spotlight; post-Thailand I was frequently feeling shaky, teary, sensitive and vulnerable. Not a good look at a fancy cocktail party.
I wanted Voiceless to lead the charge for animal protection, to really make a difference to the millions of animals suffering daily due to greed, ignorance and apathy. Voiceless was only six years old and yet I felt a huge personal responsibility: I had the power to change the lives of these innocent creatures; I needed to do things smarter, faster and better.
My latest project to develop Voiceless into a force to be reckoned with had come out of conversations with my mother, who was herself an experienced board member and fundraiser for many arts organisations. We would develop a Voiceless council of influential people who loved animals, which we hoped would make government and industry groups take notice and become more accountable. My mother’s enthusiasm was her way of showing her support for my passion; she would chair the council. She had recently become a vegetarian and now engaged with the distressing cruelty issues she had previously been afraid to confront. It was good to have her involved and we worked well together. We made lists of potential members and, with Elaine’s help, packed our calendars with lunches and coffee meetings to woo them into the organisation.
The hot summer days saw me sweating in traffic between Jasmine’s school reading group and sessions with the physio and occupational and speech therapists, running Voiceless meetings, discu
ssing reports on the pig-farming industry, attending hospital appointments with Dov and Lev and arranging play dates for Jasmine . . . It never stopped. Mum picked Jasmine up from school twice a week, taking her to ballet and other activities. But I still struggled and failed to fit everything in. Like so many women I knew, no minute was wasted. Traffic lights and toilet stops were opportunities to catch up on the BlackBerry. Every morning Ketem looked up at me from her dog cushion next to my bed, one ear folded and eyes open wide in expectation: ‘Cuddle me, talk to me, walk me, be with me . . .’ I didn’t, I just couldn’t.
Dov and Lev were at a local day-care centre three days a week to give them social interaction with other children. The process had been quite challenging: working with the centre to ensure they had funding for an extra support person in class; borrowing equipment from a non-profit loan centre to help them sit and stand; explaining their specific needs to the centre staff—how to hold, carry, feed them; ensuring they were supported but also challenged; and coordinating times for their therapy appointments while also taking into account the needs of the other children.
They went on different days bar one. So every day someone had to be dropped at nine and picked up at two. This didn’t coordinate well with Jasmine, who was dropped at eight and fetched at three-thirty. Luckily we now had Rachel, who had replaced Efrat and could drive. I trusted Rachel implicitly with Lev and Dov’s wellbeing. Like Efrat, Rachel had grown to love them to pieces. She had their backs. And mine.
As the year drew to a close, my house seemed to grow increasingly full and noisy.
I arrived home, hung my bag on the coat hook and took off my shoes. I could hear Rachel’s loud booming laugh from the kitchen and the whistle of the kettle. She always made everyone feel at home. My view of Dov and Lev was blocked by several bodies.
‘Yes, one sugar, thanks,’ said Pete, the technician for Dov and Lev’s walkers, which seemed to require constant maintenance. Another screw had broken last week.That’s right, I remembered, Rachel had said Pete would come in one day this week. I should have made sure I was at home.
‘Catch the rugby last night?’ asked Rachel, always the sports fanatic—AFL, rugby, even horseracing, it didn’t matter. I clenched my teeth and felt my shoulders rise. Rachel took control of the house on the days she was there; she was loud, bossy but also extremely efficient. She scheduled and coordinated all Dov and Lev’s appointments, which meant I could spend less time on organisation and more on playing with them. Rachel also had great expectations of Dov and Lev. Never doubted them. I liked that.
She stood in the kitchen with three cups in the making. Debbie, the physiotherapist, stood by Dov, checking the position of his torso and adjusting belts and straps in the blue walker. Lev sat quietly in his high chair, wide-eyed, waiting.
‘Such an idiotic pass,’ Rachel exclaimed.
‘Couldn’t believe it, what was he thinking?’ Pete agreed, bending over the red walker, fiddling with the lever. ‘Oh, see here, the screw needs to be kept tight.’
‘The tea’s on the table,’ said Rachel. ‘Twining’s English Breakfast, only the best for you, Pete.’ She winked.
They hadn’t yet noticed me, standing quietly by the front door, my breathing shallow. I toyed with the idea of slipping out.
‘Lev, try it now,’ Debbie said, lifting Lev up out of his high chair and putting him into the contraption, lowering the metal arms around his chest and waist.
‘See how his knees are slightly bent,’ said Rachel, leaning over Lev.
‘But his bottom is forward,’ said Debbie, moving to shove it back into place at the back of the bicycle seat.
The action made me cringe slightly, but I reminded myself that Lev and Dov didn’t seem to mind the manhandling, especially from Debbie, whom they trusted implicitly. In fact, Dov and Lev were accustomed to being fitted into objects—adult fingers prodding their bodies as standers, chairs, walkers, AFOs, bodysuits were endlessly adjusted.
‘Yes, push it back,’ said Rachel before straightening up. ‘Here, Pete, tea is on the table, Tim Tam to go with it? Or are you still on your diet?’
‘Well, the diet . . .’ Pete started.
‘It’s Mummy!’ Debbie said enthusiastically, finally spotting me by the front door.
I negotiated my way through the crowd and gave Dov and Lev kisses on the backs of their bent floppy necks, relishing the sight of the corners of their mouths tightening into a smile.
‘How’s the sitting practice going?’ Debbie asked over Pete’s head. But Pete, adjusting the height of Dov’s walker, had started describing the ins and outs of his eating program while Debbie returned Lev to his high chair.
‘Sorry?’ I said to Debbie. ‘What was that?’
A mobile phone rang. Rachel picked it up and started making dinner arrangements with her partner.
‘The independent sitting, two hours a day . . . how’s it going?’ Debbie shouted.
‘Um . . . not so great,’ I said guiltily, grabbing a Tim Tam for a sugar hit.
I was having a hard time putting them into a sitting position only to watch their backs arch and see them fall back, banging their heads on the play mat, their little lips pouting, eyes filling with tears. I hated sitting practice and avoided it. Would Debbie understand? I paused for a moment to decide if I should say something. The noise and commotion was too great.
‘Pop them down to sit whenever you do something like having a cup of tea,’ Debbie persisted, still shouting over Pete’s head. Rachel’s phone conversation had grown louder.
‘They need to learn that they can’t be supported all the time.’
Who has time for tea? I thought.
‘Okay, I’ll try harder,’ I said, my phone beeping with a message. I looked down at my BlackBerry. Another detailed message about Mum’s day, the activities she was planning with Jasmine and always a so sorry darling that she hadn’t popped in to see the boys, hopefully tomorrow, the weekend, next week . . .
That’s okay Mum, speak soon, xx. My fingers skipped over the keys of the BlackBerry. I understood the anxiety seeing Dov and Lev brought up for her and, although it saddened me, I accepted her limitations. We all have them. Still, I hoped one day soon she would feel the pure joy that I did in their company. Oh, how she was missing out. That was what kept me going. They made me smile and laugh ten times a day and their sweetness kissed my soul.
‘Have you been practising pointing?’ Prue, the OT, enquired the following afternoon.
‘Not sooo much . . .’ I trailed off, thinking of the times I had tried and watched their scrunched fingers curling in the wrong direction. Painful to watch.
‘Remember, the better they point, the easier they can identify pictures on their communication boards, express themselves, choose what they want, show what they understand,’ said Prue. ‘Pointing is also very necessary for pressing buttons on some of the latest electronic communication devices.’
Communication devices. I just wanted my kids to talk.
I was drowning in communication. SMSs from friends came regularly, words flashing on the screen: It’s been ages; Call me; This weekend?; Let’s swim; What about a picnic?; Join us; Haven’t heard from you; How are you? I texted back: Will try; Speak later; Maybe next week. In the evenings Dror discussed his new ideas on ecological research and clean-energy business ventures, wanting to know my opinion. ‘Play mermaids with me, Mummy?’ Jasmine asked after dinner. ‘Tickle time? Let’s draw together. Mummy, Mummy?’ Dov and Lev beckoned me with their eyes: Be with me; Cuddle me; Pick me up; Play with me. Ketem sat by the door waiting to go out.
Voiceless’s red-carpet event arrived. We gave awards, prizes, recognition to the countless animal advocates who were making a difference. Two hundred people clapped as former NSW Premier Bob Carr announced our report into animal law and a new exposé into the cruelties of Australia’s pork industry. They listened intently as I talked about our plans for the coming year.
At the end of the evening a tall thin woman
with deep laugh lines told me, ‘You and Brian have made such a big difference.’
A well-dressed man touched my elbow. ‘Great admirer of your work.’
‘Voiceless is so inspiring,’ said a teenage girl, eyes glistening, standing next to her beaming mother.
‘Thank you . . . So sweet . . . It’s a group effort . . .’ I heard myself say. Countless other women circled me, holding champagne glasses smudged with lipstick. ‘You should be so proud,’ they all said.
Such lovely people. And I was proud. But in truth all I wanted to do was hide in a mountain cave. Alone. I saw a dark mossy entrance, a loincloth. I could eat insects.
TWENTY
It was almost Christmas and the Voiceless office had closed for two weeks. Sydneysiders had started holiday celebrations with cocktail parties, beer and barbecues. Cicadas began singing in our garden. Summer humidity hung in the air and curled my hair. We planned to spend the school holidays in Israel, keeping our ties to the country strong, maintaining friendships and family connections and ensuring Jasmine’s Hebrew didn’t fade. We booked a holiday apartment in Neve Tzedek, knowing friends and relatives were waiting to see our children again. I hoped they would comment on Dov and Lev’s progress. But as our departure date approached, my doubts grew.
‘How will we bring all the equipment?’ I asked Dror one evening as I climbed into bed. The boys relied on their special seats and standing frames to play independently. Otherwise they were stuck lying on their backs or limp in their prams, which they hated, or propped on someone’s lap.
‘How will we keep their therapies going? How will they manage on the flight?’
I was getting panicky.
Dror was silent for a long time.
‘Maybe we should leave them here,’ he said. I wasn’t surprised. He’d started telling me with increasing frequency that our lives needed to be sustainable, that we needed to find a balance between our needs and the boys’ needs. There was no reason to feel guilty, he argued; by living full lives we would be better able to care for Dov and Lev.
The Miracle of Love Page 17