I had met Michelle, the mother of a boy with special needs, a few times through Dov and Lev’s therapy centre and decided to email her and ask to meet up. Maybe I could create my own network of support.
After leaving Jasmine with Mum for a sleepover, I met Michelle at a restaurant. As we talked, I couldn’t help comparing our situations. She had no other children and I felt both fortunate to have experienced the joys of motherhood with a ‘regular’ child but also envious that she could focus all her energy on her one child with disabilities without the guilt of splitting her time three ways. Her son was the same age as my boys and, although his problems came from a different source, the main symptoms were the same: he was floppy and not talking.
As she spoke, I could see she was full of pain, but her own wounds were hidden under a beautiful, elegant façade. We sat on the balcony of a busy restaurant talking about special-needs equipment, disability services, even the hurtful experiences in our struggling friendships with our long-time girlfriends. She had gone through such a similar journey and I found myself smiling happily, relieved that someone understood, and repeating ‘I know!’ enthusiastically throughout our conversation. My elephant was lit up with fairy lights as I sat with Michelle; hers was too. It was a real elephant party.
TWENTY-SIX
I returned to the tomes of Judaism I’d struggled to understand and learned that a soul, or Neshama, chooses its body and its family before it is born. Each soul’s mission on earth is designed to fix spiritual problems, strengthen traits and teach lessons that will progress it towards fulfilling its ultimate purpose. There are no accidents. A soul chooses the family that will provide it with these opportunities, good or bad, to learn what it needs.
I wanted to understand, to really work it all out, despite the fact that I had been cautioned against it that very week in the Sunday paper’s horoscope: Some things you can’t work out, so stop trying. Some thoughts are too hard to handle. Some things make no sense and will continue to confuse you despite your efforts to understand them.
But I didn’t care. Walking the dogs to the park, I started to think.
My mission in life, until now, had seemed very clear. Help animals. So my confusion, bafflement felt justified. Why had Dov and Lev’s souls chosen me? Why was my fate, my soul’s mission, intertwined with theirs?
Before Dov and Lev, my life puzzle, although only partly completed, was looking good. The Jasmine and Dror puzzle pieces fitted into mine perfectly, as did the Voiceless piece. Many puzzle pieces lay waiting to be added: plans to take my family to volunteer in Africa, a host of adventures in countries still to be explored, living in the countryside with rescued farm animals.
Now the puzzle was scattered on the floor, just as Bill had described it in that trendy Bondi bar.
When I arrived home, Dov was sitting in his high chair playing with his toy cars, intently watching his left hand moving a car back and forth. Rachel was preparing Lev for his midday sleep. I leaned down and kissed Dov on the bridge of his nose, the sloping skin a perfect fit for my sideways lips. His face broke into a honey-sweet smile and he wiggled expectantly. I unlatched his table and picked him up, squeezing his chest to mine.
‘You and I are a perfect fit. You are my matching puzzle piece.’ I could feel his warm breath by my ear. ‘Mummy loves Dovy Dov,’ I whispered in his ear.
‘Aaah,’ he sighed. He had heard me.
I cut the horoscope out of the paper. This would be my reminder that I didn’t have all the answers. Okay, I had no answers at all. Not one.
The following week we celebrated Jasmine’s sixth birthday.
‘How did you fit all that cake in your tummy?’ I said as I grinned down at Jasmine, who now came up to my ribs.
‘I can’t believe I’m actually six!’ Jasmine had started peppering all her sentences with the word ‘actually’ and it made me smile.
I returned to the question at hand. ‘How many pieces did you eat, exactly?’
‘Mmmm . . . three?’ she said, turning on her pretend sweet smile.
‘Where did they go? Where?’ I reached down and bared her flat little stomach. ‘I don’t know where they could be.’ I prodded at her belly.
She looked down, pondering in earnest. ‘I don’t know . . .’ she wondered out loud. ‘I used to fit in your tummy.’
‘Can you believe it?’ I replied, lifting up my shirt. She was one of four people who ever saw my wrinkled flabby tummy, as it still embarrassed me deeply; Dov, Lev and Dror were the others.
‘Mummy?’ she said softly, breaking up our game.
‘Yes?’ I wondered what little question would come; it could be ‘What do mermaids eat?’, ‘How does a bee flap its wings so fast?’ or ‘How does the light from the moon get all the way to the earth?’
‘Yes, Jasminnie?’ I prompted.
‘Can I have a sister? But, Mummy, this time, can they actually walk and talk?’
I was speechless.
‘Another brother is okay as well, but I think I want a sister,’ she continued.
‘Oh,’ I said, knowing I had to choose my words carefully. ‘It would be nice for you to have a sister to play with, right Jasminnie?’ I wanted to acknowledge her feelings. And buy some time to think.
‘Yes, it would be nice,’ she said, and with that skipped off downstairs, seemingly unfazed by the momentous topic she’d just broached.
She had good timing. With my new pockets of time and slower pace of life I had allowed myself to entertain thoughts of another child. I thought perhaps a larger family, another sibling, would be good for Jasmine as well as Dov and Lev. But I had never planned to have so many children.
When I was young, I’d imagined I would have one child, a girl. I saw the two of us together everywhere, sharing secrets, travel, adventures . . . A husband hadn’t even been in the picture! It was just me and my daughter. The thought of two children didn’t appeal. Unless, I later rationalised, one was adopted.
For many years both Dror and I had been set on adopting a child, and we had gone so far as to send the paperwork expressing our interest to the Department of Family Affairs. After Dov and Lev were born, I scratched adoption, as well as another pregnancy, from any future to-do list. Three was certainly enough children; neither Dror nor I wanted to contribute to the world’s overpopulation, and I had dreams to fulfil, apart from being a mum.
Would another child fit into my new life puzzle? Or would the pieces be incompatible and not fit together? I decided to check my options and made an appointment with a geneticist.
The day of the geneticist appointment arrived. Later that afternoon we had an IFSP meeting scheduled with one member of the kindergarten staff and four therapists to discuss the boys’ progress. I hoped the doctor wouldn’t run late.
Dror and I sat in the waiting room while I ran through my list of pros and cons for another child. Another sibling could be of great future benefit to Dov and Lev who, worst-case scenario, would need all the family help they could get.
Relying on the government system was something out of a horror film: disabled adults left in old people’s homes because supported accommodation was unavailable. Long waiting lists for too few services, and barely any financial support. The disability support system was reported as broken—fragmented, underfunded, unfair and inefficient. Bill Moss, a former executive affected by a muscle-wasting disease, wrote how, once disabled, he became aware of the discrimination, the exclusion, the rejection, the sheer bloody-mindedness of wealthy societies like Australia which could easily make simple changes that would enable many millions of people with various disabilities to participate in normal, ordinary everyday life—but won’t.
The NSW Ombudsman interviewed three hundred families, reporting that the disability service system was not responsive enough to meet family needs: There are extensive and prohibitive waiting lists for therapy; and it is difficult to get respite and in-home support when they need it. We heard that it can be difficult to access services and support
even when a family is experiencing a crisis, such as carer injury.
The more I accessed the disability networks, the further I descended into panic. I had already spoken to my father about setting up a trust fund for Dov and Lev. Despite the fact that we were in the top socioeconomic bracket, money, or rather Dov and Lev’s future dependence on it, made me highly anxious. As I knew from my grandfather, who had lost most of his money in the stock market, as well as many of my dad’s friends and contemporaries in the 1987 crash, and more recently the global financial crisis, money could be fickle. Dov and Lev needed money in order to be assured a decent quality of life—and they needed a lot of it.
It would be an enormous burden on Jasmine to have the responsibility of two dependent siblings when Dror and I were dead. I didn’t like thinking so far ahead, but this was a decision that couldn’t be put off for too much longer. I had just turned thirty-six. As much as I hated people saying that Jasmine was like an only child, I had to agree that it was hard for her to play with Dov and Lev. As she got older, wouldn’t it be nice if she had a companion, a sister for her to call, have coffee with, hold her hand when she was in labour? Who she could talk to when decisions had to be made about Dov and Lev’s living arrangements, the care they needed once Dror and I were no longer around?
But the cons were a force to be reckoned with. First, it was hard to ignore my own selfish desire to keep my body for myself and not dedicate it once again to baby-baking. It had taken three years to be able to lie comfortably on my stomach again. My pelvis was finally back in position and the joy of sleeping with my hands tucked under my belly was not something to be given up lightly.
Second, I worried about my emotional state. As it was, I was constantly feeling guilty about not being with my children enough. As much time as I spent with them, a little voice in my head said: It’s too little. You are a bad mother. You shouldn’t be checking your emails/going for a walk/speaking on the phone/writing in your journal. Bad mother, bad mother.
Coupled with that was the constant feeling I wasn’t doing enough therapy with Dov and Lev. ‘Have you been working on their kneeling in the last few weeks?’ Debbie would ask. ‘Kneeling? Oh no, I thought we were doing creeping!’ I would peer up at the goals clearly updated on the whiteboard.Whoops.
A baby on my breast and hip; would my time with Dov and Lev fall away, leaving me even more anxious and guilt-ridden? Or, most importantly, would Dov and Lev’s rate of development decrease because I was focusing on another baby rather than on them?
I settled on the rational facts. The cons would certainly come immediately: grunting through another pregnancy and birth; more chaos in the house; sleepless nights once again; less attention for Dov, Lev, Jasmine and Dror. Just as they’d come back on my radar, Ketem and Tigger would once again be forgotten.
The pros would arrive later: a friend for Jasmine and an extra sibling to take responsibility for Dov and Lev. I hoped, of course, that I would fall in love with the new baby as well and she or he would bring me great joy. Despite his environmental concerns, Dror thought another child was a good idea, feeling that in some way it could balance our family.
The doctor was an hour late. We updated the geneticist about Dov and Lev’s progress then Dror left in order to get to the IFSP meeting on time. The geneticist informed me that IVF wasn’t the only choice made by couples in the same situation as us—parents of children with rare genetic disorders. Often they would conceive naturally and take their chances. If, at eleven weeks, when the genetic test could be done, it was found that the embryo had the defect, they could abort. I’d never considered this, never thought I would consider having an abortion.
But I was late for the IFSP and didn’t have time to think about it as I power-walked through the hospital doors, hailed a cab and directed the driver to the local council office the Waverley Council Family and Community Support worker had kindly organised. I walked into the room and saw Dror surrounded by eight smiling women. Each had their report ready to pass around and discuss. They were halfway through the speech therapy presentation. See, I thought, even discussing another child causes me to be inexcusably late for something crucial to Dov and Lev.
Terry, our new speech therapist, was talking about the ‘yes’ and ‘no’ cards we’d just started using. She, too, believed in teaching the boys alternative communication, and with her gentle encouragement I had finally succumbed to the idea that they couldn’t learn to talk until their little mouths could close voluntarily to make consonant sounds. As well as ‘yes’ and ‘no’, we had built up a plethora of picture cards that were laminated onto sheets and bound with a steel ring.
I still struggled to use the cards, focusing more on the boys’ eyes and expressions to understand their desires. We were all supposed to hold up the cards while asking things like ‘Do you want a drink?’, and Dov and Lev were supposed to indicate their answer by looking at or reaching out to the card. One problem.
They didn’t seem to understand. Why hadn’t they understood?
‘This goal may take one to two years to reach,’ said Terry.
One to two years? How was that possible? It was only ‘yes’ and ‘no’. Two cards. Clear concepts.Weren’t Dov and Lev bright? Why couldn’t they grasp this?
The meeting continued. I next heard reports from the kindergarten about how well they were doing socially and how each boy had his own particular character and likes.
‘Dov is interested in construction and loves walking with support,’ said the teacher, Rebecca. ‘Every chance he gets he wants to walk—although it’s sometimes tough on the staff ’s backs.’
We talked about getting a walker for the kindy but the issue of accessibility to the playground seemed insurmountable. More discussion would have to take place and funding applications to build ramps put in. Oh joy.
‘Lev is definitely arty,’ Rebecca continued.‘He loves painting and he is also much more social. Dov likes certain people, he’s picky, but Lev loves everyone.’
I felt pleased Dov and Lev’s kindergarten teachers knew them so well and that despite the physical nature of their care—all the feeding, changing and putting in equipment—they could see through their outer disabilities to the beauty of their souls. They were similar but different. Dov would stop to listen to the sounds of birds, but Lev loved the piano. Trucks and trains excited Dov, while toy giraffes and horses made Lev smile. Dov was stubborn and cheeky, and Lev a people pleaser. Dov could hang out and watch the world; Lev needed activities, entertainment, toys to play with.
As I listened I tried to imagine bringing a baby to an IFSP meeting. It would never work. Didn’t doctors say ninety percent of our brain development occurred by the time we were five? If so, Dov and Lev were at a critical stage, the window was closing. I couldn’t let them down.
TWENTY-SEVEN
The card was already worn around the edges. It had haunted me for months, waiting in my wallet like a sharp bindii in the grass, ready to prick my skin. I had angrily pushed it aside to dig for coins at the front of a coffee line. elizabeth worth, principal, it said in capital letters. Under the airy logo was Centennial School.
My hands were clammy and I noticed the foot of my crossed leg tapping the air frantically. I sat at my desk and dialled the number of the ‘special’ school, rereading the tagline, ‘An individual journey in education’. It sounded fair enough. Dov and Lev were individuals and a journey sounded like an exciting prospect.
‘Hello?’ my voice quavered. ‘I want to make an appointment with the principal, ummm, Elizabeth Worth, to talk about my twin children’s attendance at your school.’
‘Do they have special needs or a certain disability?’ the person asked bluntly.
‘Yes, they do.’ My heart sank. ‘They have a rare genetic disorder that affects their development; it’s kind of like . . . Um, well, I guess it’s similar to cerebral palsy in the way it affects them.’
‘Are they verbal or mobile?’ she persisted.
‘Oh,�
� I said, shocked at the directness of the question. ‘They’re not.’
‘Okay, all done,’ she said, the tone of her voice happier now. Satisfied, I supposed, that my children were disabled enough to warrant a meeting.
‘Next Tuesday at 1 pm, you’re in,’ she said.
I didn’t want to be ‘in’ at all. Rather, I yearned for ‘out’. Get me out of here; get us all the hell out of here. I realised I had stopped breathing and inhaled deeply. I could do this; it was just an exploration, not a destination. I could always home-school them. The thought calmed my nerves. Yes, maybe I’d keep them at home.
I had decided to force myself to visit all the schools. After all, I’d been told we had to make a decision eighteen months before they were school-aged in case the school had to make adjustments for accessibility.
Dror was always by my side but often didn’t understand my experience. When I was nervous, anxious and sad, he felt fine. He was like a Zen monk, nothing seemed to faze the guy. I admired it but was saddened by the difference, as it isolated me further. For him it was a matter of deciding rationally which setting would be best for Dov and Lev: local public school, mainstream private school, special unit in a mainstream public school, or special school.
‘Are you nervous?’ I asked as we walked towards the front gate.
‘No, why, are you?’ he said, looking at me with genuine surprise.
I glared at him.
‘I’m not sending them to a special school,’ I said, sure that such a piece would not fit my puzzle. ‘Just so you know, it isn’t happening.’
The Miracle of Love Page 22