The Upside of Down (27 page)

‘And these are your menus. Fill these out quickly so we can organise your meals for tonight. The dietician should stop by later with a list of extra things you guys can order. There's plenty of great stuff like chicken nuggets, chips, pizza, pretty much whatever you most like to eat.' This is better than Disneyland. I can see the kids wondering why they have waited so long to visit this house of dreams.

Soon after arriving, the boys are tagged with bracelets, an act I always find painful. The bracelet feels 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 can leave and when we must stay. It's a contract, that bracelet, an agreement to follow the rules, to do what's required, even when we'd really rather not. Privacy also vanishes on the ward. Ours is a room with four beds, shared with two other children and their parents and siblings—when we're all there we number over a dozen. No private conversations or unseen tears, everything is known to everyone.

The toughest task that first morning is putting in the IV ‘long lines'. We're here to crack the pseudomonas, overwhelming it with potent antibiotics, so we need the IV. The kids have learned a bravery which sustains them though it unsettles me. Aidan quietly nibbles on his lip, squeezes my arm and focuses on the
Shrek
video. To our surprise, Oliver copes fine with the IV insertion, though clearly digging deep to find the strength to overcome his fear. But unfortunately he develops an intense dread of the sporadic finger pricks. The nurses agree to a tender routine with him, so that he controls the process with a 3-2-1 countdown sometimes requiring a full fifteen minutes to reach ‘one'. I'm so frustrated by the process I'm ready to assault him, but they repeatedly return to ‘three' and start counting again. Nurses' training must involve torturous sessions of standing in ninety-minute queues or untying impossibly tiny knots to culture this level of patience.

The staff turns out not to resemble a cranky great-aunt at all. The women in the ward's kitchen go into daily hand-to-hand combat with the central food providers to make certain Aidan's cherished bacon is consistently delivered for breakfast, knowing it's importance for a boy who needs to keep on the kilos. The physiotherapists break up the monotony of twice daily sessions by allowing Aidan and Oliver to do blistering runs on the treadmill. And the medical team is not put off by our questions. Or other surprises.

‘Hi Aidan. Hi Oliver. How are you guys go—Uh oh, what's happened here? Um, okay, so I think I had better get someone in to clean up.' Sarath's staring at the floor, paralysed. Obviously neither medical school nor his own parenting has trained him to deal with defecation disasters. After pasting on innocent looks for thirty seconds, the boys detonate with laughter.

‘It's plastic!' Oliver squeals, beaming with pride at the success of his joke.

‘Wow, it really looks real,' says Sarath, taking a closer look and nudging the plastic poo gently with his foot. ‘That's the first time a patient's pulled that one on me.'

The howls of delight have woken Darryl and Ellis who were napping on the parent bed. Darryl, who's trying to maintain normal work hours but is here the rest of the time, looks exhausted. He pulls himself up, anxious to talk through some questions.

‘Hi, Sarath. Um, Susan and I have been wondering why the kids might have both developed pseudomonas at the same time. Do you think it's in our house?'

‘It's pretty much everywhere. It grows in stagnant water, so we often find it in drains, showers, in the saucers under pots.'

‘Yeah, I know. But why now, both of them?'

‘Look, it's hard to say. Maybe you visited somewhere.'

‘That's one thing we're wondering about. We were all in Sydney last month and we stayed in these apartments that had a dodgy swimming pool.'

‘What do you mean “dodgy”?'

‘It looked like it hadn't been used for a long time and there was a film on top of the water. We only realised it after we had all jumped in.'

Sarath pauses, maybe hesitant to assign blame too quickly. But Darryl's keen to narrow the scope of dangers lurking around our kids. We can sleep with the idea of pseudomonas in Sydney, imagining it creeping around in our kitchen sink is more worrying.

‘Maybe, yeah, it's certainly possible. But the important thing is that you got the kids to cough something up and we caught it early.'

The medical team is honest but upbeat. They tacitly acknowledge our long-term relationship with the hospital, knowing the kids will be members of this community their entire lives. If it's going to be a place of healing, it can't terrorise them or steal their optimism and their dreams.

By the second week cards are flooding in from family and friends in the US, New Zealand, England and France. We tape them on walls and windows. The kids have sloppily expanded across our end of the room; the shoes and smelly socks scattered on the floor, like home, elicits a comforting familiarity. Our roommates are uniformly friendly, though quietly stressed. They are replaced every few days but we stay.

Life at the hospital changes us. While on the ward my phone is off, the laptop sits untouched for two weeks, even the
Economist
goes unread. Instead, Aidan and I spend repeated mornings battling an impossibly difficult nine-piece bug puzzle and finish our first-ever
Sudoku
. Oliver and Darryl watch
Mythbusters
cuddled up on his bed. Ellis spends hours snuggled up with someone on one of his brothers' beds, watching TV, watching them, patient and happy with this privileged family time. We creep into the kitchen to make late-night milkshakes and popcorn. Our friend Madeline brings a gift of an impressive 1:10 scale, 1,000-piece Lego Ferrari. Darryl and the three boys are utterly absorbed by its assembly for three or four days, thinking and talking of nothing else—nurses and roommates alike are relieved when it's finally complete and the topic of discussion moves on.

We are slowing down, nothing to do but heal.

After the first week we begin escaping somewhere most afternoons: local parks, the zoo, or a nearby pizza place. Overlooking the helipad, there's always a great flurry of excitement with the room's occupants rushing to the window when the helicopters fly in and out. The arrival of the helicopters, carrying someone in serious distress, reminds me to be grateful. I kiss the boys and Darryl more often, more affectionately.

In the second week Aidan begs to be allowed out to play in his cricket match. After taking a few practice bowls in the ward and listening to Sarath recount his own story of breaking his nose in a cricket match, Aidan is temporarily released. We all cheer him on at the game, watching as he bowls two overs with his right arm, the IV taped up securely in his left.

Eventually, though, the hospital begins to drag us down. Waking, sleeping and eating in an environment of illness sucks dry my optimism. I begin questioning the fundamentals that we have built our family's life on, like: ‘With hard work we can keep CF at bay for a very long time' and ‘Hope and love can stand up to any trial'. What if we can't slow the progress of this illness? Will our family really be able to withstand the pressure? I pinch my eyes tightly, pressing back the tears, recoiling from the negative thoughts. Denial? Absolutely. While we're in the hospital it's the only remedy for the pain.

When it all starts to be too difficult, the days too boring, the worry too immense, our friends show up. Rod and Karen, hosts at our adopted home, wash and fold our laundry every day and pray for us. Karen keeps Ellis at home when he has got too much zoom for the ward or I have too little to cope with him. Liz cares for our house and chickens, relaying answering-machine messages, fetching forgotten items, watering the plants, leaving a homemade lasagne and fresh milk in the fridge in preparation for our return. One day we stop by home and are surprised to find a striking azalea bush in a massive terracotta pot on our veranda, a thoughtful gesture from a group of school parents. Several friends hire a cleaner to get our house back in order. Our friends' love is so practical, so willingly given that it feels tangible, concrete, as though I could hold it in my hand like a lump of gold. I am humbled by it.

Finally, it's our turn to check-out. After talking with Sarath, I rush back to our room to tell the kids.

‘Guess what, you guys? We're going home tomorrow.'

‘YES!' shouts Aidan, punching the sky with his fist. He's just nine years old but already achieves Rafael Nadal's testosterone levels.

I look over at Oliver and notice he's crying. ‘What's the matter, honey? Why are you upset?'

‘Well, it's just that … I don't know, but I don't really want this to end. I mean, I hate the IVs but the other things are nice.'

‘You mean watching so much TV and movies and eating dim sims every day?'

‘Yeah, that stuff. Also just doing puzzles and fun things with you and daddy. And all being together with nowhere we have to be.'

He is right. It has been a holiday from everyday life, from bickering over the scum on the toilet bowl and uneaten lunches, from focusing so hard on the mundane that we miss the magnificent. The last few days I've been desperate to leave, anxious to get home, yet there's a part of me that understands Oliver's tears. I don't know if it's because this hospital is therapeutic or just the sobering nature of illness, but something has caused us to stop, take notice, delight in each other and appreciate the blessing of friends.

***

Within weeks of returning home from the hospital Darryl and I find ourselves having repeated conversations about developing permanence and memories for our kids and time for us as a family. We brainstorm about how to change our lives so that we're living more fully today and making more space in our lives for enjoying our kids.

Meanwhile, in New Zealand an important piece of Darryl's family history is on the market. On our first trip to New Zealand just after marrying, Darryl had made a point of taking me to Waihi Beach to introduce me to the family's beach house—the ‘bach'—as if meeting a member of the family. He needed me to know where he had spent his summers, trawled for shellfish and waited for the perfect wave. Coming from California, I imagined huge floor-toceiling windows, a sleek kitchen and flashy deck lounges. But as Darryl had pulled the car up a narrow, overgrown driveway with potholes deep enough to park a small child, I began to wonder. The house turned out to be a poky red weatherboard L-shape, built around a rough concrete deck. The floors were 1960's linoleum, the kitchen enclosed and a tight-squeeze for two. There was a coffee brown couch and several slumpy chairs. The beds were bunks or hand-me-down doubles. Malibu was nowhere to be seen. Within a day I had adjusted to the one-star reality of the bach and was already drawn in by its power.

In the fifteen years that followed, in spite of our frequent moves, the bach (pronounced ‘batch') has been a constant presence, a physical anchor, a place for regrouping. But now things are about to change. Darryl's grandfather, who first bought the bach, has been dead thirty-five years. Six months ago his wife, the family matriarch, died. The grandchildren have had twelve children of their own and use of the house is becoming messy. Darryl's mum and her siblings reluctantly decide to sell it.

Sitting in Melbourne, trying to refocus our lives on our kids, the family bach is never far from our discussions. A variety of circumstances, including difficulties with the Immigration Department and a red-hot property market, have left us still renting a home after fifteen years of marriage, thus adding to our sense of instability. Eventually an idea comes to me one night while Darryl and I are lying on the trampoline, watching the flying foxes pass and the stars appear.

‘I know this will seem ridiculous, but maybe our unpredictable life justifies ridiculous sometimes.' Convincing him of the merit of my idea may not be easy; Darryl's generally sensible and restrained when it comes to money. And my suggestion means money with a capital M.

But I plunge in anyway, reminding him of the power of our family experiences in the little village in the South of France, where we retreated annually. We also discuss the physical benefits—becoming more widely accepted—of proximity to the sea for people with CF.

He's quiet for a few minutes. ‘You know, it's really tempting. I would love to create a place in the kids' lives like I had.'

‘The thing is, of course, if we do it we may not be able to buy a real house for a long time.' Now I'm sounding like the voice of reason.

‘That's true,' he says. We're both silent, weighing up a future crowded with landlords and rental inspections. ‘But if we wait, we'll probably never have another chance like this.'

‘And I hate to even say it but we just don't know what the future's going to hold for all of us. We need to live today.' Within an absurdly short time we graduate from ‘what if' to ‘why not'.

It's a late winter weekend when we pack everyone in the car and drive to one of our favourite beaches for the weekend. Inverloch is about ninety minutes southeast of Melbourne with both an inlet and a surf beach. We rent a room in a tiny motel. The next day, rather than pulling out our boogie boards, we buy a map and make friends with every estate agent in town. A few months, and forty-five house inspections later, we have the keys in our hands.

‘Ellis, can you please tell Daddy to slow down because he's making me nervous.' For several minutes I hear nothing but prolonged crackling and the muffled sounds of a three-yearold brain and awkward hands wrestling with the complexities of a two-way radio. Then he relays the answer.

‘Daddy says you shouldn't worry because the truck won't tip over. And we're having a lot of fun up here. How's it going back there, mum?'

‘Okay, I guess … But I'll be glad when we finally get there,' I mumble to myself, the only one who's listening.