by Mary Moody
Now, of course, we are thankful for their maturity and their ability to cope with whatever life throws at them. For they have accepted not only that their first-born is profoundly disabled, but that she will probably require their care and devotion for the rest of her life.
There isn’t a definitive diagnosis for what ails Isabella, although the pointers are towards some sort of rare chromosomal disorder compounded by a multitude of problems that may or may not be associated. She was tiny when she was born in January 2002. Only 2050 grams, or 4 pounds 10 ounces. The birth went quite smoothly, with our daughter Miriam by Lynne’s side as her ‘labour supporter’. It’s one of the things I treasure about my large and affectionate family. Our children are all there for each other and there is a continuity in their relationships which often revolves around the joyous occasion of birth. When Ethan was born in the front room at Leura, Miriam was by my side the entire time, mopping my brow with a wet washer and watching in awe the long and often arduous process of birth. After me, Miriam was the first person to hold Ethan and they bonded like glue from that first moment. They still adore each other.
When Miriam had her first son, a homebirth, while she was a final year university student in Canberra, Ethan insisted on taking time off school to come to the birth. She desperately wanted him to be there. He was only fourteen and the midwife said afterwards that he was the most ‘together’ young man she had ever seen helping at a birth. He came to the birth of Miriam’s next two sons and was sadly disappointed that he and Lynne were in France when her fourth baby boy was born in Bathurst.
Now here they were together again, this time for the birth of Ethan’s first child.
Lynne laboured well until it was almost time for the second pushing stage of labour. She was connected to a CTG machine which suddenly indicated that the baby was becoming distressed. It was decided to prepare Lynne for a caesarean section and while the midwifery staff were getting organised Lynne, being comforted by a very frightened Ethan and Miriam, suddenly felt an overwhelming urge to push. With a little encouragement from Miriam, she did just that and within minutes Isabella was born, tiny but to all intents and purposes perfect. Indeed, the paediatrician on duty pronounced her ‘perfectly formed and quite normal’ in spite of her diminutive size. However, Miriam was concerned even then that something was not quite right. The placenta, when delivered, was also very small. It appeared as though Isabella had not been nourished adequately during the pregnancy. Something was amiss.
Lynne was a devoted mother from day one. She had been told to ‘feed and feed’ Isabella to try and compensate for her low birth weight. Night and day, every hour, she put that tiny baby to the breast and although Isabella didn’t have a strong sucking reflex she tugged at the nipple sufficiently for the milk supply to let down and trickle down her throat. She gained weight, slowly but steadily, and became more responsive as the weeks went by. But not nearly as responsive as she should have been.
When I saw Isabella during those early months she was always contented. Sweet-natured and not at all demanding. Her red hair formed a bright halo around her circular beaming face and she seemed like a delicate little doll rather than a robust newborn baby. She didn’t cry but made strange mewing sounds and as she grew she started growling. We nicknamed her ‘tigerbaby’.
The first indications of a problem were muscular. She just didn’t seem to be using her arms and legs or holding her head up strongly like a normal baby. She was floppy and made no effort to support her weight when held up with her feet on your lap. Within the family, we started to be concerned but decided that discovering if there were problems with their daughter was a journey that Ethan and Lynne must make in their own time – that there was no purpose in us nagging them about her slow development when surely the community nurses and the paediatrician overseeing her would quickly detect that things were not progressing as they should. But it was not to be a quick response.
Part of the problem was, I am sure, that it would take Ethan and Lynne quite a while to acknowledge that Isabella had permanent disabilities. For a long time they clung to the idea that her ‘delayed development’ was the result of her low birth weight and that she would somehow miraculously catch up with her peers, the same way premature babies do over a period of some years. Gradually, however, it became obvious to all of us that Isabella was very different. Unique, in fact. From six months onwards her differences were acknowledged and totally accepted by her young parents and the search was on for answers, a diagnosis. The never-ending testing had begun.
The first and most crucial problem to solve was Isabella’s inability to feed properly. For six months her diet had been the best food for all newborn babies – breast milk – but now she was failing to thrive, starting to go backwards. Lynne tried patiently for weeks and weeks to introduce solid foods but Isabella seemed incapable of swallowing. She rolled the food around her mouth and pushed it out. She gagged if forced. To try and boost her growth, a nasogastric tube was inserted into her nostril, although Lynne also continued to breastfeed. I went to the hospital on the day they were to insert the tube for the first time. I wanted to be supportive. Ethan and Lynne held tiny Isabella as still as possible on the examination table while the nurse pushed the tube down her tiny oesophagus. I held down her protesting little feet. Ethan and Lynne were calm despite the traumatic nature of the procedure and I was a quivering wreck, tears cascading down my cheeks at the distress of our tiny baby. If I had known then what Isabella would endure over the next two years, I would have been even more distraught.
Isabella’s muscles have never worked properly, inside or outside. Her digestive system doesn’t function efficiently. Her bowels are also sluggish and require constant suppositories and enemas to keep them functioning. She requires feeding around the clock – after twelve months the nasal tube was replaced by a stoma, which means her formula is delivered directly into her stomach in small doses every hour or so. She can only tolerate the simplest formula and even on that regime her body regularly becomes overloaded and protests by rejecting the food. Sometimes she vomits solidly for days at a time.
She requires physiotherapy on a daily basis. Until she was two years old her disabilities were not properly recognised, because there was no definitive diagnosis. Without a ‘name’ to pin to a disability, it’s difficult to get financial support from the wide range of services within the community health system. Now, thankfully, the entire local medical profession has swung behind the young couple and Isabella is under the constant care of a dietician, a physiotherapist, a speech pathologist, an occupational therapist, as well as myriad paediatricians with specialities that range from neurological to gastroenterological. Ethan and Lynne are entitled to home help for several hours a week and assistance to take Isabella for regular hydrotherapy at a heated indoor pool. Isabella also attends a regular day care centre twice a week and has her own carer who manages her complicated feeding regime and provides the much-needed stimulation.
As if Isabella’s problems were not enough, she has also been diagnosed now as being deaf – up to 90 per cent total hearing loss. And vision-impaired.
As with all tragedies, there are positives. First and foremost is Ethan and Lynne’s unflinching ability to cope with every aspect of Isabella’s care. Not only have they totally accepted her condition, they have embraced it. Instead of wallowing in self-pity and asking themselves ‘How could this happen to us?’ or ‘Why our baby?’ they have claimed their daughter as the most special and delightful of all children. They dote on her and lavish her with attention and concern for her development. They make caring for Isabella look easy when we all know it is far from that. The sleepless nights, the constant demands, the worry when her bowels decide to stop working and she slips into pain and distress. The knowledge that she may never walk and talk like other children, that she will never reach her genetic potential. They take it in their stride like the mature young couple they have always been. Perhaps they were that way for a reason.
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br /> The other positive is Isabella herself. Despite her myriad disabilities, she is the most engaging little person. Smiling widely, she now has a full complement of teeth and she waves her hands in excitement when you catch her eye or make physical contact. She is enormously responsive to human interaction and everyone in her orbit is drawn to her. In a way, her whole being is charismatic and wherever she goes you will find people leaning over her pram and talking to her, or stroking her face. It’s impossible to come into a room where Isabella is and not want to make contact with her. She is totally irresistible. When the family gathers, Isabella is put in the centre of the family room floor, usually hooked up to her feeding tube and surrounded by bright, tactile toys. Within minutes the other children join her on her purple rug, lying with their faces on the floor talking to her. Nobody tells them to, they just do it.
Lynne and Ethan have also sought the advice of alternative medical practitioners to help with Isabella, especially with her ongoing feeding problems. She has been seen by naturopaths and more recently a local herbalist who uses iridology (examination of the eyes) to aid in diagnosis. Lynne made an appointment with Kaye without realising that I had consulted her myself, nearly twenty-five years ago, with Ethan when he was a baby. Ethan was a fussy feeder and during his first six months he was often unsettled and colicky. Kaye’s treatment helped enormously. Under her guidance I modified my diet and she also prescribed Bach flower remedies to calm Ethan down. It worked. Having not seen Kaye for years, we met accidentally in Leura one day.
‘I’ve just met your granddaughter Isabella,’ were her first words to me.
‘Isn’t she beautiful,’ I replied with pride.
‘She’s an amazing child,’ Kaye replied. ‘I looked into her eyes and couldn’t believe what I saw. There’s a lot going on in there. Much more than any of us realise. She’s a very special little person.’
Kaye was confirming what we instinctively knew to be the truth. Isabella has come into our family as the most precious gift of all. She is like a shining light and will always, always be surrounded by love.
10
During the period in late 2002 when I was wrestling with the writing of Last Tango there was something important I neglected to tell David. Neglected isn’t the right word. It was something else, like the sexual attack in the village house, that I had deliberately decided not to tell him. Keeping such important information to myself naturally created a vast schism between us.
When I fell in love with the man from Toulouse, David sensed it immediately. Even before it was a reality – when it was little more than a long-distance email and phone infatuation – he picked up on my signals and observed my moods and behaviour to confirm in his own mind that troubled times were ahead. After the affair ended we spent weeks and months in painful discussion, agonising about the rift in our relationship. Once trust has been betrayed it is almost impossible to regain. David admitted that one of the main problems, from his perspective, was the probability that my infidelity would lead to further affairs. That I wouldn’t stop at one.
At the time I railed against this notion. The affair had happened only because I had fallen in love. It wasn’t a shallow sexual adventure, it was a deeply heartfelt relationship that had been difficult to sever and extremely painful, not only for David but also for me and the man involved.
But it wasn’t that simple. That I had fallen in love was certainly the truth, but the affair had also triggered in me a sexual charge that I found difficult to ignore. The fact that David and I had always enjoyed a full and satisfying sex life didn’t seem to make any difference. I was experiencing mid-life sexual curiosity and I couldn’t switch it off or bury it. It was now part of me and it meant that I looked at the world and at myself through different eyes. The ‘me’ that I had felt so confident in and secure with for the past thirty years had somehow vanished and been replaced by a new and different me. A more sexually overt me. Perhaps it was because I had been in the same monogamous relationship since I was twenty-one, and that before falling in love and getting together with David I had been relatively inexperienced. I had never really sown my wild oats and now, I feared, time was running out.
The change in me was patently obvious. I shed a lot of weight and started exercising to improve my muscle tone. I changed my hairstyle and the way I dressed. While these physical manifestations didn’t happen overnight, they were clearly obvious to my friends and family. It wasn’t consciously calculated. I didn’t sit down and formulate a makeover plan for myself, a blueprint for how I wanted to look. I simply became much more aware of my appearance, and I expect this is why I started worrying about lines and wrinkles and other external signs of ageing. None of these superficial concerns had ever been an issue for me until now and, while intellectually I could see what was happening, I didn’t have the ability or the desire to prevent the changes from happening. It was too exciting.
It was an eventful year. In January, Ethan and Lynne gave birth to Isabella Rosa. In May, I went to France and the UK to lead a garden tour and I started my clandestine relationship with the man from Toulouse. At the end of May, David joined me for several weeks holiday following the Cannes Film Festival. He went back to Australia, leaving me to work on the book. I continued the affair, totally swept away by the excitement of it. David then confronted me the moment I arrived back home in Australia in late July. In September, I was back in France on my own, ostensibly to continue working on the book but also to lead the first of the regional village walking tours I had planned the year before. While obviously not all that thrilled that I was in France without him, given what had just happened, David somehow trusted me enough to believe that I was working hard. Which I certainly was.
The problem is that when in France I feel energised in a way that I haven’t felt for years. I socialise much more intensively, burning the candle at both ends night after night. In Australia, I concentrate on my immediate family and a small but much-loved group of friends. In France, I have a wide and varied coterie of new friends and acquaintances, and even though by September the busy summer season has finished, the social life is constant and stimulating. Naturally, there are a lot of men around – both married and unmarried – and I enjoy their reaction to the new me. Being an Australian is also a bit of a novelty in this region. Australian women tend to be more open and expressive than their English or French counterparts; less hidebound by culture, tradition or class, and often more garrulous. I revel in the company of my lively friends, especially when gathered around a table of good food and wine. I tell the most outrageous jokes and enjoy the shocked reaction that comes from risqué tales being told by a woman.
Among my large and varied circle of friends is a man I have known since I first came to this region in 2000. Intelligent, articulate and single. Our paths cross socially from time to time although he lives quite a distance from our village. I always found him attractive and interesting, but I had never contemplated a sexual relationship with him. Nearly ten years younger than me, he has been living alone for three years, having separated from and then finally broken up with his long-standing French girlfriend. His work takes him overseas several times a year, so he isn’t always around at the same time as I am. This eventful year, however, he’s around constantly and, knowing he lives alone, I invite him over for dinner several times. On the surface it’s all quite harmless.
He’s quite a reserved person and although our conversations bounce energetically around all manner of topics, from politics to poetry and music, from religion and ethics to sex, he is quite reticent on a personal level. Intellectually he’s out there, but emotionally it’s as though he has a protective wall built around himself. I find it quite appealing and ponder if there is a way of breaking down the wall. Discovering what’s on the other side.
One evening after a dinner at my house followed by several hours of animated conversation, he suddenly realises how late it is and gets up to leave. The residual mess from our meal is scattered on the table an
d kitchen bench and I’m feeling rather woozy from all those hours of drinking wine. As he bends to give me the customary polite farewell kiss on each cheek, I put my arms around his neck and kiss him squarely on the mouth. I hadn’t been sitting there thinking about it while we were talking – I would have been a nervous wreck if I’d been anticipating and planning such a bold attempt at seduction. It’s a spontaneous impulse. Unpremeditated, impetuous and completely reckless. Instead of drawing away from me, he steps forward and puts his arms around me, our bodies touching for the first time. I feel a rush of warmth and retreat, drawing a few deep breaths to steady myself.
‘I think I’d better go home,’ he says.
‘Yes, you should,’ I reply, probably too quickly.
Without turning back, he walks out into the cool of the evening and heads straight for his car. I close the door immediately without standing and waving him off as I would normally do.
What was that? I think to myself. You must be mad. You really are losing your marbles. Without clearing up the dinner debris, I retreat to my bed but lie awake for what seems like hours, trying to process the events of the evening. Trying to make sense of my actions and his response to them. But I can’t make sense of it. It is all totally beyond me.
11
Given the lateness of the previous night’s events and my trepidation about talking to the man I had kissed so clumsily, I hesitate until well after nine the next morning before telephoning him. He sounds bright and chirpy when he answers the phone and I launch immediately into a babble of apologies and explanation.
