‘Come, let’s sit down and talk,’ she said, motioning to the couch. ‘I’m not angry. It’s just . . . I keep trying to get together; I don’t understand why you keep saying no.’
‘It’s been hard . . .’ I started again, but stopped. What should I say?
‘I care about you, I really do,’ she said. There. That’s what I needed.
‘I’m freaking out about Dov and Lev,’ I said, my voice wobbling, ‘what’s going to happen.’ I took a deep breath. ‘I’m in constant anxiety.’
‘You seem so strong all the time, so together,’ she said gently.
I was surprised; it was hard to believe I was such a good actress.
‘Well, I’m not. I have to be, I mean, to be there for Jasmine, look after Dov and Lev, run the therapy program, but that’s all a façade . . .’ My voice cracked again. I took a sip of my tea and tried to gather myself. ‘If you could just give me the benefit of the doubt . . . I’m really struggling to cope.’
‘I didn’t know,’ Lisa said slowly. ‘I’m really sorry. I just want to be your friend. Tell me, how are they doing?’
The dreaded question. I must have grimaced.
‘Honestly,’ she continued, her voice slightly harder, ‘I never know whether to ask you or not. When I do, it seems to stress you out, and I don’t want to make your life harder.’
‘No, I want you to ask,’ I said. ‘I really do. It’s just hard to answer, but I want to, okay . . .’
I took a chocolate chip cookie from the plate on the coffee table. Energy.
‘The boys are good . . .’ I said, seeing their sweet little faces, bright with smiles. A ferocious love swept through my body. But then I saw their dysfunctional hands, trails of drool, pointed dystonic feet . . . They were still struggling to sit independently, unable to crawl or roll, just wiggling their bodies forward, like caterpillars, on the play mat . . .
‘. . . But not good. That’s the problem. I never know what to say. I keep having these hopes that . . .’ My voice trailed off and I took another sip of tea, washing down the cookie stuck in my throat. ‘I hope and then keep being disappointed. I feel like nobody is interested in hearing all the details. Like the communication board. I tried to tell you but didn’t feel like you wanted to hear . . .’ I seemed to be whining.
Lisa’s eyes were wet and full of compassion. ‘I’m sorry. I’ll try harder to ask and listen more,’ she said. ‘Often I just don’t know how to respond. I don’t want to say the wrong thing. So I just keep silent and think that it should be enough to simply hear you.’ She had a point. But still, I needed more.
‘I need a response,’ I said, my voice stronger now. ‘Otherwise I imagine what you’re thinking and get really self-conscious. I worry that if I really shared what was going on all the time it would be an endless whine and nobody would want to hang out with me any more.’
‘No, I want to hear. I promise you. I do,’ she said.
I led the conversation onto another topic and we finished our tea. I looked at her and noticed a change, as if she had morphed from a cold obligation into a warm consolation. I felt like hugging her. I felt good.
‘I will try to be more honest,’ I said as we embraced each other goodbye, and I meant it.
The following day I woke up with a smile on my face. The strategy for Voiceless was complete and new staff were about to start. Dad and I had discussed hiring a CEO in the near future, to take the load off us both.We agreed that we would continue to be fully engaged, but on the macro rather than micro level. I just couldn’t see myself back in the office on a daily basis; I did not want to sacrifice time with Jasmine, or the needs of Dov and Lev, and I had come to rely on my solitary time to write, practise yoga, walk the dogs and clear my head. Dad was preoccupied with the medical research, and he had many other investments and causes to attend to.
Ketem jumped onto the bed and lay down beside me, her white paw on my shoulder, soft breath and long whiskers on my cheek.
I was looking forward to a trip to Byron Bay. My parents had paid for a few days at a boutique retreat as a birthday present. A short flight up the coast then three days alone. Alone, alone! I would sing the word from a green hilltop carpeted with wildflowers while dancing in a state of ecstasy to the sound of my own music. Only three weeks to go . . .
That evening, the kids asleep and Dror working downstairs in the office, I slouched in front of the TV with takeaway. As I took out my knitting, my phone beeped. Mum. She had been expressing her feelings to me more and more over the past few months. Her own journey of psychotherapy was softening her pointy Mr Rush corners into smooth arcs. She had taken to penning long emotive cards. The last one had come in an envelope at my birthday dinner, accompanying the Byron gift.
I am so proud of you, darling, she had written. You are the most amazing mother to Dov, Lev and Jasmine and wife to Dror. I am full of admiration for your strength . . .
It had brought tears to my eyes, and our hands had met over the white tablecloth, squeezed between the rock salt and crusty bread.
A few days later and the thought of our planned trip to Panama, soon after I returned from Byron, was slowly fraying my nerves. Panama. So random: Panama hats, Panama Canal. What else did Panama have to offer? I had rarely heard of the country and here it was, right in my face.
Dror and Dad had flown to Los Angeles to meet some researchers working on adult stem cells. They had decided to pursue the mesanchymal stem cells, the kind derived from cord blood. The cells could be injected into the boys’ veins, the idea being that they would reduce brain inflammation and help healthy new neurons to grow. Someone had mentioned a stem-cell clinic in Panama. Dror had taken note and started to investigate. I hadn’t taken it seriously. Until now.
‘What I’m thinking is,’ said Dror, ‘combined with the DITPA that is mimicking T3 and getting across the blood–brain barrier . . .’ I was finding it hard to concentrate. ‘By the way,’ he continued, ‘did you know that since we have increased the dosage to eight milligrams we are nearly at the optimal level? So the stem cells could send chemical signals to their brains to regrow affected cells, which would stimulate . . .’
‘Don’t tell me,’ I interrupted him. I had become accustomed to cutting him off mid-medical lecture. I hated medicine and still hated doctors for failing me, for failing my children.
‘Dror, sorry. It’s okay, I just can’t hear about the medical stuff now. It’s too much.’ I felt my brain curl up into a spiky ball like an echidna. ‘I trust you: if you think it’s worthwhile, that’s all I need to know.’
‘I think stem-cell treatment may help a little,’ he said cautiously. ‘That’s the most we could expect, just a little.’
We both knew that even a tiny bit of help could change Dov and Lev’s lives. If their hands worked a little better, they could feed themselves, a major step towards independence. If their backs were a little stronger, they could sit and play independently. If their chest and mouth muscles were a little sturdier, maybe they could coordinate the air movement and mouth positions enough to start talking or just babbling. A little was a whole lot. A little was the world.
TWENTY-NINE
Three weeks later, I found myself in Byron Bay, sitting cross-legged on soft green grass shaded by a large tree. In front of me was an old farm fence, and beyond that, sloping hills dotted with eucalypts and black cows as still as sculptures. Mountains framed the horizon. The sky was blue and clear with a cool wind blowing, rustling the leaves gently.
I had arrived at the tree after a long walk around the property. As I walked my mouth twitched and my eyes burned. I knew emotion was coming up but I wasn’t clear as to what it was all about. I was hoping to relax, not feel sorry for myself. Finally I’d found a place to sit out of view of the guesthouse.
I started to cry: shoulder-shuddering sobbing. I hid my face shamefully behind the guest map of the property, although there wasn’t a soul around. What was this about? The word ‘Panama’ circled in my head.
My crying eventually subsided and I noticed a magpie staring at me from a leafless branch on the other side of the fence. The beauty of nature always calmed me, put things back into perspective, reminded me how small I was in the scheme of things. The magpie lifted its glossy black wings and glided down to the fence post in front of me. Beautiful. It turned its head to the side and peered at me from one black eye. I had once learned that some birds can’t see you directly so they turn to the side to get a proper look. She flew towards my head and whooshed to the left. ‘It’s okay, birdy,’ I said out loud, swallowing my salty tears. ‘I’m just minding my own business.’
She flew from the far fence post to the tree behind me.
Whooosh. I jumped. She had whizzed past my face and, perching in a branch above me, now cawed aggressively. Hey. That’s not sensitivity. That’s mean. Bloody bird.
‘I’m not moving, bird, this is my space too,’ I said out loud. She peered at me from her left side.
Slowly, I descended back down into sadness and cried afresh.
Shit. Another fly-by warning. She had come at me from behind, narrowly missing my head.
‘Okay, you win.’ I got up, feeling wobbly, and walked back to the guesthouse and an empty day bed.
I sat down on the weathered cushion.
Suddenly I realised it’d been twelve months exactly since I’d been swimming in Thailand, convulsing with fear and sadness. Here I am again, sobbing away alone, I thought. What have I achieved?
I had tried so hard to work things out, make sense of why my children had been inflicted with such profound disability.
I had searched, begged and pleaded with God (or anyone else in charge) for an epiphany.
My head was ravaged by confusion. I’d filled up five pretty floral journals with my dark ugly thoughts. Socrates said that the life that is unexamined is not worth living. But I was sick of this.
I took my diary from my bag and rummaged for a pen.
Right. Let’s get to the bottom of this. Despite all my navel-gazing in the past year, what in fact had I accomplished since Thailand?
Let’s make a list. Quantify. Evaluate. Analyse. Draw a graph.
Well, today I am crying alone, no difference there.
Crying, crying, crying. Crying had become my life. I could hardly believe that before all this happened I had struggled to release my emotions. That as a child I hadn’t been able to scream to the trees as my dad had encouraged; that in my adult life I had once been able to count on one hand all the times I had wept. Well, I’d certainly learned to cry. I’d give myself that. I wasn’t great at expressing the feelings buried in the compost bin that was my head, but I knew how to have a good cry.
But tears couldn’t be noted as an achievement on this list; they’d been a constant feature since Dov and Lev had come along, sadness permeating the very marrow of my bones. That would be a straight line on the graph. I needed a sloping upgrade, a sign of progress.
Fear. Well, I was still scared of the future. Terrified. Exactly as I had been a year ago. Another straight line.
Hope. Today I held on to a desperate hope that Dov and Lev would eventually learn to walk and talk. Same as last year? Same, same.
But, hold on. Was the desperation a little less desperate? Yes. Maybe a little.
I abandoned my diary and spoke my fears aloud, just as I’d done in the warm Thai waters. No one heard me except the old magpie, who was now sitting in an adjacent tree.
‘I am soooo very very very scared of taking Dov and Lev to Panama,’ I told the bird. Maybe she would be a good listener after all. ‘Scared that I won’t be able to physically manage all the lifting and carrying. Lately my arms seem to be getting weaker rather than stronger. Scared that I won’t sleep on the plane and be close to breaking point. But most importantly . . .’ I sobbed for another minute, a sign that I was getting to the crux of the matter. ‘Scared of the treatment.’
What if something went wrong?
I would rather die.
What if it didn’t work?
Dov and Lev were edging closer to five, the magic number where the window of brain development would close, and this seemed the last hope.
If this did not help, what was left? More work on the damned pointy finger; more scooping Dov and Lev up from the floor like ragdolls; more placing them into sitting positions and watching them fall; more dribble bibs; more bulk nappy orders with pictures of babies on the boxes; more horrible steel equipment that looked like it was made to torture, not help, people.
How would they ever get from this to walking and talking?
Did my graph have a chance of an upward curve?
In the last twelve months I had struggled with God and faith and started praying like I was on death row; I’d fallen in love with writing and got to know my limitations, emotional and physical, as I greeted my hamstrings kindly and tried to touch my toes. Those were accomplishments, however small.
Dov and Lev had improved slightly in their physical strength and coordination and had grown into handsome little boys perfectly able to communicate their needs and emotions.
Jasmine had started school and grown more beautiful, smart, thoughtful and kind. These gifts and blessings were nothing to sneeze at.
My parents had started to emerge from their grief. Sorrow still overshadowed the joy they might have felt in Dov and Lev but I was relieved to see them grow a little stronger.
Friends had become used to talking about the unmentionable, or perhaps I had grown accustomed to bringing it up more often, breaking that taboo of disability. I had learned to ignore their awkward comments, to remind myself they cared and to have compassion for their limitations. I hadn’t found a support group but had made a new friend who, when times were rough, could be counted on to understand my pain.
Yes, I could see many upward lines on my graph. Valuable things had been achieved.
Three days alone. Alone, alone! But I didn’t feel like singing on a mountaintop. In fact, I realised that the last time I’d travelled solo was twenty-five years ago. My love for animals, combined with my parents’ workaholic tendencies, had inspired them to send me off to a horse-riding camp for ten days. I was eleven years old and the country girls laughed at me and my inept riding as my horse shied at the jumps and cantered in a chaotic fashion. I lay in the top bunk bed, curled miserably in a ball as they whispered secrets below me. I ate alone in the dining room as they plaited each other’s hair and giggled at the pubescent boys. Being alone, I realised, wasn’t necessarily the key to inner peace.
I walked the winding paths between my room and the communal dining room of the Byron retreat, hoping for invisibility. But I passed other women chatting merrily and felt embarrassed at my aloneness and hyper-aware of the tears waiting to well up. The passionate desire for me-time disappeared and was replaced by depression and homesickness.
Home. It wasn’t a place; never had been. Now I knew—home was my family.
The second morning of my retreat I woke early to do yoga. The teacher counselled us to ‘sit with our pain’. She meant the pain of stretching hamstrings but I interpreted it otherwise. How apt. The next day it rained. But I found sheltered spots to contemplate my sadness, had a massage and saw the naturopath.
‘Your adrenal glands are overwrought and on the verge of collapse,’ she warned dramatically. ‘No more coffee.’ I left with vials of supplements and a hefty bill. After a guilty coffee, I rushed to my kinesiology appointment. I had picked kinesiology out of the spa brochure as it offered to balance the energies of the mind and body through muscle feedback. Sounded good.
The kinesiologist asked many questions. I found myself choking back tears as I told her about Dov and Lev. That hadn’t happened in a while. Recently I’d found myself talking to strangers about Dov and Lev completely dry-eyed. Revolutionary.
I told her I wanted to live without the constant anxiety I felt about the future, to be able to surrender to whatever happened. To increase my faith that things were as t
hey were meant to be. That my life puzzle would slowly re-form and it would look good.
‘I’m worn out by the worry,’ I said.
She replied that for the process to work, we needed to set a goal for the session. I struggled to think of one, it all seemed too big, too much to put in a sentence.
‘What about something like . . .’ She wrote down her suggestion and read it to me slowly: ‘To live each day calm and relaxed, trusting the process of life.’
‘Yes,’ I said. ‘I like that.’
I lay down on the table.
My left arm lay by my side on the treatment table and her hand was under my wrist. She pressed just above my wrist and asked, ‘Are you ready to tell the truth?’ and then, ‘Is there anything preventing you from telling the truth?’
My arm moved slightly.
‘Feel the difference?’ she asked sweetly, looking into my eyes. ‘Your arm resists when I ask your body “Are you ready to tell the truth?” and when I ask it “Is there anything preventing you from telling the truth?” it loses its power.
‘When it is a circuit breaker your arm goes loose.’ She lifted my arm to demonstrate.
Hadn’t she picked up my arm? What was going on? What was a circuit breaker?
‘I’m going to ask your body now if it is sabotaging your goal. Usually we all have sabotage mechanisms.’
My arm didn’t move. Were her fingers holding it down? I couldn’t tell.
‘Yes!’ she said excitedly. ‘There is a sabotage.’
‘Oh, so when it doesn’t move that’s “yes”?’ I asked, confused, because I’d thought it was the other way.
‘Should I explain it to you again?’ she said, looking put out.
‘Sorry, yes, please . . .’
‘When your muscles stay firm that means “yes” and when they relax that means “no”.’
‘You would think it would be the opposite,’ I suggested cautiously.
‘No. When your body agrees with something it stays strong and when it disagrees it is weak.’
The Miracle of Love Page 24