The Long Hot Summer (7 page)

Our son Aaron had just acquired his first car, a rather battered old white Kingswood ute, and he was charged with the task of picking up the empty casket from the western suburbs. On the way back up the mountains the engine overheated and he had to pull in to a service station for some water. An attendant came over to help him, took one look at the coffin in the back of the ute and fled. Aaron thought this was highly amusing.

We covered the kitchen table with newspapers and invited people to come and participate. I made a huge pot of Mum's
favourite Irish stew and we filled the fridge with beer and wine. One by one friends came and each made a contribution to the decorating of the coffin. Aaron's closest friend from school, Jake, is a talented artist and he adored Muriel. He painted her portrait on the lid and perfectly captured her spirit. Another friend painted a cluster of yellow roses, Mum's favourite flowers, along the edge of the lid. Jenny Kee, known for her love of Australian flora, came by and painted a large bunch of bright red waratahs. We dipped little Eamonn's hands in red and blue paint and imprinted them along the side of the box. We tore pages from Mum's famous notebook – quotes and sayings from various journalists – and pasted them onto the wood.

As the evening wore on and we drank more wine, our inspiration escalated. Mum loved the chickens we kept in a coop in the back yard. I scooped them from their perches in the dark and they were subjected to having their feet dipped in paint. The side of the coffin became a colourful montage of chicken footprints, and there were also footprints on the back verandah where they walked after having been so rudely woken from their slumbers.

The following morning Aaron did the same trip in reverse, taking the garishly decorated casket back to the funeral parlour where Mum's body was lying. He took down her best outfit so she could be dressed, placed in the casket and brought back home for the last time. It was suggested by the ladies in white that they should bring her in the hearse rather than making the return journey in the back of Aaron's ute. They were probably right.

That last night we gathered again, eating, drinking and telling funny Muriel stories while she lay in state on the kitchen table. Most of the stories revolved around her capacity for outrageous
behaviour. Aaron recalled only a month before when David and I were away for the weekend and he had decided to have a party at the house. Mum went to bed early as usual, then woke up and joined the party after midnight, dressed in her nightie. She sat up drinking with a gang of teenage boys for hours until she finally fell asleep on the sofa and they all carried her back to her bed. Typical. It felt good knowing she was there inside the box on the kitchen table with all these stories being told around her and about her. Everyone was laughing. Although we were terribly sad, we were also happy. Our memories of her were happy ones. It certainly helped.

The morning of the funeral, Miriam and I opened the coffin and applied a little make-up to Mum's face. We invited people for 11 a.m. and the plan was to leave for the cemetery at 1.30 p.m. We had organised champagne and lots of sandwiches. It was to be a party.

People gathered on the back lawn and drank champagne. David was the MC and we all spoke: David, Miriam, both my brothers, close friends and neighbours. My brother Jon reminded us what a beautiful and elegant young woman Muriel had been when he first knew her. Jim McClelland reminisced about their shared political beliefs. It was informal and spontaneous and it all felt just right.

After the sandwiches, we opened the lid of the casket so that those who wanted to could see Muriel and say goodbye. Quite a few family and friends had said they didn't wish to see her in death, but somehow now they all did. They filed past her coffin and kissed her goodbye. There wasn't a dry eye in the house.

The hearse arrived and we hastily replaced the lid and the pallbearers marched her coffin around the garden she had loved
so much, up and down the winding pathways and between the roses. She chose well to die in spring when the garden was at its peak. As they carried her out the front gate (I had removed the cow manure by this time), the entire party let out a thunderous cheer.

At the cemetery the mood was more sombre and sober. We placed her last half-empty bottle of Scotch and half-finished packet of cigarettes on the coffin as it was lowered gently into the ground. An Aboriginal friend told David that it is customary in their culture for the deceased to be associated with a favourite animal or bird which is symbolic at the moment of interment. Mum had always loved the noisy currawongs that came up from the valley every autumn and sheltered in our garden. So we called out ‘currawong, currawong' as a parting gesture. When we looked up into the gum trees at the back of the cemetery there were currawongs everywhere, watching.

Mum was a Celt and fiercely proud of her heritage. We built a traditional cairn of stones over her grave. She also loved the symbolism of the Celtic cross and we had one made for her from sandstone with her name, Muriel Flora Moody, and date of birth and death inscribed. Under her name we have carved the words ‘Up the Revolution'.

Our seventh grandchild, Isabella Rosa, with her Italian ancestry on her mother's side and her sweep of burnished red hair from her Celtic side, has all sorts of medical problems. She was conceived by our youngest son Ethan and his partner Lynne on the eve of their departure for France on an extended working holiday. The only hitch was that they had no idea Lynne was pregnant as they set off with the expectation of exploring Europe in between stretches of working wherever they could find employment, as well as doing some basic renovation to our little village house.

Lynne felt ill from the day they first set foot on French soil and after six weeks of blaming her symptoms on jetlag, a virus and even the local water, she tentatively bought a home pregnancy testing kit at the local pharmacy. The result was positive.

It was not a good pregnancy because Lynne was either vomiting or felt nauseous for most of it. She gained weight, but not nearly as much as the local midwife she consulted every four weeks would have liked. The French medical system is very
thorough and she underwent all the routine tests. One of them, taken in her fifteenth week, indicated that she was in the ‘medium to high risk' category for a baby with a chromosomal disorder. An amniocentesis was recommended but given their age (both in their early twenties) and positive attitude towards the pregnancy, they decided to decline. In any event, even if a complication was confirmed, it would be too traumatic to do anything about it this far into the pregnancy. So they waited it out with great optimism.

At seven months, they cut short their European adventure, after bravely exploring regions of Holland, France and Spain despite Lynne's permanently queasy stomach, and returned to Australia to prepare for the birth.

Ethan and Lynne have always been a very mature couple despite their tender years. They have been together since they were seventeen and travelled north to the Lismore region to undertake their tertiary studies at an age when most young people are still living at home, expecting their Mum to cook their dinner and do their washing.

Indeed I used to worry about their sober and responsible attitude to life, thinking they had grown old well before their time without ever having been outrageous, irresponsible kids. One chilly winter evening when they were first living together I called around to see them and was startled to find them cuddled up knitting a blanket – out of cast-off scraps of wool they had been given by Lynne's Sicilian grandmother – Lynne at one end, Ethan at the other. I went home and said to David, ‘I'm really worried about those two. They're like an old married couple. They should be out having fun, not sitting at home knitting. They're more settled than we are.'

Or ever have been, I probably should have added.

They were always good at managing money and saving. From the beginning, our family nickname for Lynne has been ‘budget woman' for her uncanny ability to save even on a student income. Unlike our other children who, from time to time in their student years, got into financial scrapes and called out for some urgent parental assistance, Ethan and Lynne have always managed brilliantly under their own steam. It was this resourcefulness that enabled them to save enough to fly to France and to travel as much as they did during their foreshortened stay in spite of the fact that Lynne had been too unwell to work after they arrived.

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.