This piece won the a National Literary Award from the Fellowship of Australian Writers in 2005. It was the Jennifer Burbidge Short Story Award. An abbreviated version was later published in Melbourne’s, Sydney’s and Canberra’s Child in 2006.
Our family just returned from an extraordinary 12-day holiday. We got away from it all: no dishes, laundry, answering machines, school lunches, bickering. Okay, there was a TV, but we didn’t watch it as much as you’d expect. We played cards, built precarious Lego contraptions, played tricks on the staff and had late-night snacks of popcorn and milkshakes. It’s true that there wasn’t a beach or a swimming pool; however, we did have an excellent view of the helipad from our room. As for the food, well, it was better than KFC, though certainly not French cuisine. We’re hoping our next holiday will be somewhere rather more ordinary, like Broome or Bright, and not Central Melbourne, at the Royal Children’s Hospital.
There’s a lot to hate about hospitals, especially the paediatric variety. Machines beeping, needles poking, children crying, normalcy disappearing; the catalogue of complaints could fill a hefty medical chart. But somewhere amidst the dark tunnel of our visit emerged some goodness. Now that we’re back in the thick of our out-of-hospital lives, I find myself digging around for clues to what the good was all about.
This hospital holiday was not a just a short fling; we have an on-going relationship with the place. For the first 30 years of my life I was totally ignorant of all things medical. My three sisters all became nurses; I studied politics. My mom volunteered at a hospital; I steered clear. Apart from a few sports-related injuries, I avoided white coats and waiting rooms all-together. I was quite content to stay in that exclusive class of healthy people, an elite group who pass by hospitals without entering, who drop gold coins in buckets labelled with unpronounceable medical conditions—giving partly out of generosity, partly as a superstitious offering to the gods of good health.
Then I married my sweet, healthy boyfriend, Darryl. Five years later we had a baby, Aidan. He was seven weeks premature: strong blue eyes, no hair, a curly toe and cystic fibrosis. Nearly three years later his brother, Oliver, entered our lives: a head-full of black hair, piano-player fingers and cystic fibrosis. Four years later, our last son, Ellis, arrived with two curly toes, a quiet nature and good health. But by then, our co-dependent relationship with the medical world was already well-established.
We learned a lot in our crash-course in genetics and clinical medicine after Aidan’s birth. Cystic fibrosis (CF) is the most common genetic condition among Caucasians. About a million Australians are carriers of the gene, most without knowing it. It takes two genes—one from each parent—to tango with CF, so most people never do. And never realise how close they came to facing this complex condition.
But about every 2,500 births there’s one baby born with a slightly wonky gene out on chromosome number seven. That gene leads to a failure of the cells to deal properly with chloride, which in turn leads to thickened secretions throughout the body. This can make digestion tricky, but manageable with enzymes. However, the thick mucus is very problematic in the lungs, leading to infections and permanent damage; and, often, to broken-down lungs by early adulthood. The gene was identified in 1989; since then, there have been some front-page medical breakthroughs—most ultimately leading nowhere very exciting—but no cure.
Unlike many serious health conditions, CF allows us some chance to minimise its impact. But it requires a commitment to a rigorous home routine. Chest physiotherapy has been a once or twice-daily feature of life since our babies first came home from the hospital. Right now we’re doing a total of seven sessions on a nebulisers a day in our house, though the tally’s not always that high. The kids swallow a trail of tablets—probably about 25-30 a day for each child—whenever they eat. Despite all of this, every family would agree that these interventions are worth the work: they give us months and years which we might otherwise miss.
For many families living with CF the hospital ward becomes a second home, the IV pole a constant companion, nurses good friends, and doctors known on a first-name basis. But we’ve been fortunate thus far, missing all but the occasional hospital slumber party. For us, the ward remains an unfamiliar place, a strange and spooky place that we visit only once every few years.
A few weeks ago both Aidan, aged 9, and Oliver, 7, were unexpectedly admitted for two weeks of IV antibiotics. The rest of the family packed up to be with them. We’re lucky to have some great friends, real our-house-is-yours kind of friends, who live around the corner from the hospital. Darryl and I decided to rotate round-the-clock between the ward and their house, with 3-year-old Ellis often in tow.
Before leaving home I blindly carry out all of the normal pre-holiday routines: pack the bags, including toys, games and special blankies; find a neighbour to feed our chickens and collect the eggs; water the plants; closethe curtains; double-lock the doors; coax the kids into the car; and drive to the hospital.
We know this place, the Children’s, even though we haven’t spent a lot of time as in-patients. We’re here often for appointments; for x-rays, blood tests and scans; and for McDonald’s. The ticket-man at the parking lot knows us; in my rush to leave, I always forget to pay the ticket inside, but he’s kind and patient and pretends not to mind. The Children’s has always seemed a bit like a prudent great-aunt, ever-present, clucking over our shoulder, reminding us that one day we’ll need to come and stay with her—and when we do, there will be nothing but strict routine and plenty of endives and Brussels sprouts to eat. We know she cares about our well-being, but we don’t really enjoy her company.
The oddness of the hospital floods back when we arrive on the ward. The boys are tagged with bracelets, an act that for some reason I always find painful. It’s symbolic of a change of ownership and authority, a reminder of the loss of freedom and control. Someone else will decide mealtimes and med-times, when we must leave the ward and when we can stay. That bracelet is a contract, an agreement to follow the rules, to do what’s required, even when we’d really rather not.
It’s not only freedom, but privacy which vanishes on the ward. We share a room with two other children and their parents; they are replaced every few days, but we stay. No private conversations or unseen tears—everything is known to everyone. This time we remember to bring blue tack for hanging “Get Well” cards on the walls and windows. We sloppily expand across our end of the room; the shoes and grubby socks scattered on the floor, like home, elicits a comforting familiarity for me.
There are distressing times. Putting in the long-line IVs is daunting, but the kids have learned a bravery which reduces me to tears. Aidan nibbles on his lip, squeezes my arm and focuses on the Shrek video playing above him in the procedure room. Oliver dreads the finger pricks required for monitoring the drug levels in his blood. The nurses develop a tender routine with him, allowing him to control the process with a 1-2-3 countdown.
Thankfully, the staff turns out to not resemble a prudent great-aunt at all. Professional, yes; rigid, no. Three years ago Christmas was spent at the Children’s with then 4-year-old Oliver admitted for a week. He only arrived in the ward, from ICU, on Christmas Eve at about 10pm. By seven o’clock the next morning the end of his bed was weighed down by a Santa-sack nearly the size of him. It was overflowing with Thomas the Tank Engine, Bob the Builder, a grunting toy chainsaw and other well-chosen gifts. We gave Oliver a scooter and Aidan a skateboard; the nurses pretended not to notice while they drag-raced up and down the corridor, IV pole in tow.
Although the major worry with cystic fibrosis is the lungs, it can affect a number of organs. At times it feels like we’re floating on a leaky boat—just when we patch up one hole, another pops out somewhere else. This was a bit the case six months ago when Aidan was having severe intermittent abdominal pain. He spent a week on the ward and then returned four times in the following week in agony. When the pain disappeared on the Friday morning, the staff scrambled to reschedule his CT scan a few hours earlier so Aidan could escape in time to compete in a District Cross-Country race that afternoon. They believed it was safe (it was) and knew he needed to run after his hellish fortnight. Against all odds, he ran like a madman and finished 10th out of 90, qualifying for the Zone race. And reminding me not to underestimate the strength of one’s will—to heal, to battle, to defeat the odds.
During our recent visit, we are touched by the kitchen staff’s thoughtfulness as they do battle to get Aidan’s cherished bacon consistently delivered for breakfast; important for a boy who needs to keep on the kilos. Doctors and nurses alike are startled by the brown, plastic poo Oliver lays on the floor by his bed with a sheepish grin, hoping for a response. They laugh and usher in the Clown Doctors who are armed with even better practical jokes. The physios break-up the monotony of twice-daily sessions by allowing the boys to do blistering runs on the treadmill. With our fingers crossed, Aidan asks permission to play in his cricket match on the Saturday morning. He bowls three overs with his right arm, the IV wrapped-up in his left.
You see, the medical staff understand our long-term relationship with the hospital, they know our kids will be members of this community their entire lives. If it’s going to be a place of healing, it can’t frighten or terrorise them. It can’t steal their hopes and their dreams.
Obviously, it’s not only the staff that plays a role in the kids’ healing. Darryl and I are an integral part of the process everyday, outside of the hospital and in. But life at the Children’s is different for us too; I notice my perspective changing. While on the ward my phone is off, my laptop sits untouched for two weeks, even the Economist goes unread. Instead, Aidan and I spend hours battling an impossibly difficult nine-piece bug puzzle and finish our first-ever Sudoku. Oliver and I watch Mythbusters cuddled up on his bed. Darryl and all three boys assemble an impressive 1:10 scale, 1,000 piece Lego Ferrari. We escape somewhere most afternoons: nearby parks, the zoo, a local pizza place. We all slow down, nothing to do but heal.
Sickness is present; it clings—uninvited—to the hospital walls. Our room overlooks the helipad. The helicopters come and go, ferrying those in serious need. The arrival of a helicopter reminds me to be grateful. I kiss my boys and Darryl more often, more affectionately.
Friends go way beyond the call of duty, leaving us humbled and touched. One cares for our house and animals: relaying answering machine messages, fetching forgotten items, watering the plants, leaving a homemade lasagne, salad and milk in the fridge for our first night home. Others visit, offering gifts for the boys and a kid-free coffee break for me. One day we stop by home and are surprised to find on our veranda a striking Azalea bush in a massive terracotta pot; a thoughtful gesture from school parents. Our hosts at our adopted home wash and fold our laundry everyday. Several friends pay to have our house cleaned before we leave the hospital. The acts of love flood us, like streams of light replacing the darkness.
Finally, it’s our turn to check-out. Aidan is relieved but Oliver cries, with sadness, when I tell him we’re going home the next day. He has loved the treats and the attention. I’ve been so ready to leave, so anxious to get out, and yet, there’s a tiny part of me that understands Oliver’s tears. There’s something to be said for a place that helps a family slow down, delight in each other and appreciate the blessing of friends.
Hopefully our next holiday really will be in Broome or Bright, but maybe we’ll be able to bring along some of the lessons we learned during our stay at the Children’s.