by Mary Moody
Miriam had a steady boyfriend when she left home to go to university to study arts/law and then communications, but after that relationship broke up she fell in love with Rick, and in the last year of her degree she gave birth to Eamonn, my first grandchild. I was delighted, but also somewhat surprised when they announced the pregnancy. To both David and me, Miriam always appeared such a focused career girl, an academic overachiever who would probably end up in some high-powered city job, delaying partnership and parenthood until her late thirties. Not so. Miriam and Rick moved back to the Mountains – then to Bathurst – and over the next decade had three more beautiful boys, Samuel, Theo and Augustus. Eventually they moved to Adelaide, so that Miriam could follow her passion for natural childbirth by enrolling in the three-year Bachelor of Midwifery degree offered by Flinders University. She’s a fine example of how her generation embraces change without fear: from law to communications to midwifery – I sometimes wonder what she will do next!
Aaron left school before the HSC and worked as a trainee landscaper – inspired, I suspect, by my passion for gardens and plants. At the time he had a steady girlfriend and several of his friends had decided to do university degrees in Lismore, so he enrolled in a TAFE horticulture course to formalise his qualifications. For various reasons Aaron’s friends gradually dropped out of their studies and returned to the Mountains. He was lonely and, I now realise, quite depressed but he stuck it out. When he returned home he reconnected with Lorna, a girl from his high school days. They set up house together and Aaron continued to work and study. Like Aaron, Lorna was a very hard worker, grounded and responsible, and a lot less wild than his previous girlfriends. Once again I was surprised when they announced that Lorna was pregnant. She looked a little shocked too – it was unplanned – but Aaron was over the moon. Hamish was born not long after Miriam’s second child, Sam, so suddenly we had three lovely little boys in the family. Two years later – it was the year I spent six months living alone in France – Aaron and Lorna produced their second child, our first grand-daughter, Ella Mary.
Ethan, our youngest by five years, grew up even more quickly than his older siblings. He left school early and studied music in Sydney for a year, then became involved in a relationship with Lynne, who was keen to study horticulture and the environment. They moved in together, somehow surviving on a very modest income, and formed a tight-knit team from the beginning. They travelled north to study and lived frugally, even managing to save for an ancient car on their student allowances. After graduating, they moved back to the Mountains and – wanting to inspire them and to broaden their horizons – I suggested that they save up and go to stay in the little village house that David and I had bought in south-west France. Save they did. They moved back into our house, worked three or four jobs at a time, and within six months had cobbled together their airfares and spending money. I was delighted, believing this would open a door to the world for them. Even though I was thrilled with my grandchildren, part of me was a little sad that Miriam and Aaron would almost certainly be tied down for many years to come with the responsibilities of parenting when their friends of a similar age were forging ahead in their careers and travelling the world. So I really wanted Ethan and Lynne to travel and to enjoy their youth to the full.
They headed off to France and I went off to lead one of my trekking tours. I was staying in a small hotel high in the Indian Himalayas when a call came through from Miriam with the news that Ethan and Lynne were expecting a child. To say I was stunned would be an understatement. When I managed to get through to them they told me Lynne had been feeling unwell since they first arrived in France, and that eventually she had tests which revealed her pregancy. They were both quite happy, though naturally a little surprised by the prospect, and unfortunately it meant that they would have to come home several months early because the airlines won’t allow anyone over thirty-two weeks pregnant to travel on an international flight.
Lynne often felt unwell during her pregnancy but, despite that, she and Ethan had a fantastic time in Frayssinet, where they were embraced by the local community. Then they flew home – Lynne barely looked pregnant at all – and seven weeks later tiny Isabella was born. She was the smallest baby I had ever seen – terrifyingly small – with a thatch of red hair and translucent skin. She was exquisite, but something about her seemed not quite right. In France they had been warned that various prenatal test results indicated that their unborn child was at risk of a ‘chromosomal disorder’, but the paediatrician in the delivery room declared that she was ‘small but perfectly formed and normal’. The whole family adored her from the first moment. It turned out that Isabella did indeed have problems, which only emerged gradually, becoming more serious with time. However Ethan and Lynne bravely went on to have second child – this time a large and healthy boy. They named him Caius, the first name of Julius Caesar, quite a moniker for our youngest grandchild to grow into.
In 2005, a few months after The Long Hot Summer was published, Ethan and his family came to live with us at the farm while they were saving for a house of their own. The plan was that they would build on the five-acre block at the back of the farm, which is separated from the main part of the property by the old Sydney road. We loved the idea that they would be living nearby. It meant that we could help with the children, while Ethan and Lynne could help keep an eye on the farm when we were away travelling for work.
The local council had other ideas. Our farm had once been in the Evans Shire which, like so many regional councils across the state, was amalgamated with a larger council nearby (Bathurst City) to form a super council. The rationale was that that the administrative costs would be greatly reduced. After the amalgamation there was a moratorium on subdivisions in our region and, in principle, I agree it was necessary. It’s disheartening to see productive farmland being carved up into lifestyle building blocks. However, our vacant block was certainly not productive, being covered with scrub, weeds and noxious pine tree seedlings from surrounding state forests. It needed a lot of environmental management, and Ethan and Lynne would have been just the couple to restore it brilliantly, with their horticultural and environmental bush management qualifications. When it became clear that the council was not about to make any exceptions, they continued to save with a view to buying a house back in the Blue Mountains when they could afford it, and in the meantime they lived with us.
By this time, Isabella had been diagnosed with a range of quite severe disabilities, and was in need of constant care and attention, day and night. David and I had become accustomed to living alone as a couple, and we knew we would have to adjust to having a young family in the house, especially given Isabella’s problems and the recent strains on our marriage. David was worried that it might be stressful to have so many people suddenly living under the same roof, but I thought it would be good for us all. I have always enjoyed the atmosphere of a lively house full of people, and having children around is very grounding.
Child locks were fitted to the kitchen cupboards and the pantry shelves were rearranged so that only unbreakable items were on the lower shelves. Like many men after they reach middle age, David isn’t relaxed about change. I was aware of him muttering and mumbling because he ‘couldn’t find anything’ in the pantry, and struggling to unlatch the childproof locks on the cupboards. In recent years he had taken over the laundry, doing my washing as well as his own. Suddenly the laundry was filled with buckets and basins for soaking – both Isabella and Caius were in nappies and Isabella’s feeding pump sometimes popped apart, leaking the pungent formula onto sheets and towels – and there was a mountain of washing to be done every day. The family room was filled with children’s toys and various large pieces of equipment used for Isabella’s daily occupational therapy and physiotherapy. Everything was very neatly stowed away and not scattered underfoot, but having a two-year-old bouncing around in his pyjamas during David’s precious television news time was a bit unsettling for him at first.
But I just loved it. Even though I was working in my office most of the day, I could come out and spend some time with Isabella or Caius to free up their mother if she needed to do something else. Lynne is a super-organised, efficient young woman; she couldn’t have survived the difficulties of caring for a disabled child and a toddler at the same time without being on top of everything. We took turns in planning menus and cooking. Lynne is very strict about Caius’s diet – much as I was with my children when they were kids.
As well as travelling back to the Blue Mountains for his job, Ethan did a tremendous amount of work around the farm. Like all the farms around us we have been suffering from the drought – years of it – and our water supply from the spring had become fragile. Ethan encouraged us to abandon the idea of keeping stock while water reserves were so low, and he redesigned and rebuilt the fencing so that when the day finally comes that we are once again able to put animals out to graze, they won’t be able to walk through the wetland or trample and despoil the creek or the dams that flow into it. He also eradicated the broom and blackberry that had started to proliferate in various paddocks and set aside an area for natural bush regeneration. The trees that have seeded on that hillside are now well over three metres tall.
Living in an extended family requires tolerance and compromise. For twenty-six years while the children were growing up, my mother, Muriel, lived with us at Leura, and it required a lot of give and take from all of us to make it work. Having our young family at the farm reminded me of how carefully the situation had to be managed. It was harmonious most of the time, but there were some hair-trigger moments. Ethan needed to get up extremely early to shower for work. David was also in the habit of rising early, to make his ritual three cups of coffee that allow him to ‘ease into’ the day. Our water pressure at the farm is pretty dodgy, reliant on a pump to send water into the kitchen and bathroom. Some mornings David inadvertently had the taps flowing in the kitchen during Ethan’s shower, leaving the poor boy shivering under a pathetic cold drizzle. Words were spoken. Yet this living arrangement, so common in previous generations when young married couples often stayed with their parents until they found their feet financially, ultimately became very agreeable and cosy.
David loves small children, but doesn’t have a natural aptitude with them. This interlude enabled him to develop a delightful relationship with his youngest grandson. One of David’s chores is to care for our flocks of geese, ducks and chicken, which involves releasing the geese to graze every morning, feeding and watering the remaining birds and collecting the eggs. In the evening the eggs are collected, water freshened, and geese rounded up for the night. Caius took to helping his grandfather with this task, and the sight of the two of them striding purposefully down to the poultry yard together every morning, each holding a walking stick, did my heart good.
Having Isabella in the house somehow seemed to mellow David. It’s impossible to ignore her presence in any room – not that she’s particularly demanding. It’s just that she needs a lot of interaction and affection, and I realised that David was paying more attention to her than I had ever seen him give our own children. Not in a practical sense, but in terms of making eye contact with her, talking to her and keeping her company in the back room while the rest of us were busy with other things. We became very, very attached to both the children and accustomed to the house being full of life and noise and action. We would have been happy, I’m sure, to continue living this way indefinitely, but after nearly two years, Isabella’s deteriorating health forced her family to move back to Blackheath, where they were closer to the hospital where she receives treatment.
7
Beautiful Isabella, with her alabaster skin and long red hair, is a joy and a great worry to her parents. Isabella’s journey has been a rocky one, probably from the moment of conception. There is no obvious explanation for why she failed to thrive in utero, no illness, no accident, no set of circumstances that would cause placenta and baby to remain so tiny. In her young life she seems to have spent almost as much time in hospital as she has at home, hooked up to a feeding pump that delivers vitamin-enriched formula directly into her stomach via a valve in the side of her small, thin body. The fact that she survived is, I suppose, a miracle in itself, due to the advances of modern medicine – which make life possible for infants who in previous generations would certainly have died – and to the devotion of her parents.
Having Isabella in our family has quite radically changed the way I feel about fundamental life and death issues. If you had asked me a decade ago what I thought about a child who couldn’t walk, talk or sit upright for more than a couple of moments, who couldn’t chew or swallow food, and who had hearing and vision problems and therefore wasn’t capable of functioning in any way like a normal, healthy child, I would have said that particular child would be better off dead. I certainly don’t feel that way now.
Isabella’s parents are fiercely independent and have coped with the care of their disabled child without asking for or expecting much help, even from their immediate families. From the moment it became obvious, around the age of about six months, that Isabella’s problems were much more complex than just a failure to thrive, they have assumed the mantle of responsibility and done so in an amazingly positive, good-natured and accepting manner. They have never complained about their lot even though since her birth seven years ago they have not enjoyed a peaceful night’s sleep, and have the constant worry of a child whose future appears very uncertain. I have enormous admiration for them both.
Medically, Isabella’s condition falls into the category of ‘global developmental delays’. This is just another way of saying she has a whole cluster of different problems, some connected and some that stand alone. It took more than a year before the various government departments that support families with disabled children would offer any assistance because there had been no definitive diagnosis. In spite of testing for a wide range of disorders and syndromes, there simply wasn’t a convenient label they could put on Isabella, and therefore she fell through the cracks in terms of qualifying for support.
Eventually it was acknowledged that she wasn’t simply suffering from delayed development and that there were many more serious symptoms that would require ongoing treatment for the rest of her life. She needed the care of so many different specialists – starting with paediatricians and gastroenterologists, and including dieticians, neurologists, speech pathologists, physiotherapists and occupational therapists. The list goes on.
Isabella cannot ingest food normally, so finding the best sustenance for her has been a nightmare. She is fed through a tube, and her digestive system can’t tolerate rich formulas, so there is a constant process of finetuning going on in the hope that she will continue growing despite the fact that the liquid pumped into her tummy is better suited to nourishing a newborn than a seven-year-old. She has grown, certainly, but she is much, much smaller than she should be for her age. Her legs, in particular, are very short and finding clothes that fit her is always a problem.
During the period leading up to the age of four Isabella made steady, if extremely slow, progress. She could sit for more than an hour at a time, was interested in everything around her, and had started rolling around and getting up onto all fours. We all felt certain that she was on the verge of learning to crawl. She was having intensive physiotherapy, including spending increasingly lengthy periods in a standing frame that had been designed and built specifically for her size and her needs. There is a lovely aspect to all this and it’s about volunteering. Groups of retired men – men who often have been carpenters or builders during their careers – give their time to build customised equipment for disabled children. They create special seats with trays so that the children can be well supported while playing with toys that are designed to stimulate their senses. They adapt beds and cots and wheelchairs to make them more suitable for the needs of a particular child. They construct standing frames which force the child to carry their ow
n weight on their legs and feet while preventing them from toppling over.
Isabella spent hours in her special standing frame and, while we questioned that she would ever walk, we knew that this daily exercise was strengthening her legs and helping them to grow. Then something devastating happened. Isabella started to have seizures. At first they were like little flutterings of the eye, but gradually they increased in intensity and frequency, and she was diagnosed with epilepsy. This was the beginning of a downward spiral. As the seizures became worse Isabella started to lose her hard-fought-for milestones. The length of time she could sit unaided diminished, and she started falling over. Once she had been quite capable of lowering herself gently to the ground when she felt too tired to keep sitting up, but now she just flopped down. She required a protective helmet to prevent her from damaging her skull as she fell.
Isabella also suffers from a disorder called cyclic vomiting, which means that every few weeks her system rebels, and she simply can’t hold her food down for three or four days, or even longer. This results in extended stays in hospital because she can easily become dehydrated and unable to absorb the medication which protects her against seizures, thus putting her at risk of having a major ‘event’. Lynne stays all day and night with her during these hospital visits, in a small fold-down bed provided by the hospital. She gets up early in the morning and dashes back to their house in Blackheath to organise Caius while Ethan is getting ready for work. Caius goes to pre-school two days a week, but if he’s having an at-home day he goes back to the children’s ward with his mother and they keep Isabella company until his father has returned from work. Lynne drives him home, staying to have dinner because the hospital does not provide meals for parents, and then, no matter how tired she may be, she drives back to the hospital to spend the night with her daughter. Some nights Ethan sleeps at the hospital instead to give Lynne a break and some time alone with Caius. It’s an exhausting juggling act.