by Susan Biggar
‘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.
Darryl, Ellis and Oliver are driving in front of me in a truck we’ve borrowed from some generous friends. In fact, so generous that half of what’s packed in it once belonged to them: furniture, crockery, pots and pans, even a juicer and fruit-drying machine. Darryl’s brother Grant has also donated the remnants of his former Sydney apartment, including beds, blankets and two fabulous ocean kayaks. All are essentials for our thrilling new beach house venture—if we ever make it there, the way Darryl’s driving that truck. Eventually, via a message through Ellis, I demand to drive in front. If they’re going to end up in a ditch I refuse to watch it happen.
‘We’re here! We’re at our bach!’ Oliver’s running around flapping his arms as though trying to get airborne. Meanwhile, Ellis is still obsessed with the new toy, disappearing into the shadows a few houses away, radio pressed tightly to his lips.
‘Mum, can you still hear me now?’ And, about five steps further, ‘What about now? Can you still hear me?’ Unfortunately, Aidan is missing the excitement as he’s in New Zealand visiting Raewyn for the week.
In our typically ambitious manner we’ve decided to christen our house late on a Friday night, leaving home about seven and arriving after nine o’clock. Before I have located the key in the dark and opened the front door we hit the first snag.
‘I’ve turned on the mains power and the gas for the stove, but I can’t find the tap for the water,’ Darryl reports. We search outside in the dark for thirty minutes before giving up. Lack of water for the nightly cup of tea is bad enough, but even worse is the unprecedented popularity of the now unflushable toilet. Then we discover problem number two.
‘Susan, where are the sheets and duvets?’ Darryl calls out from the back of the truck.
‘Uh, the last time I saw them they were on the front porch.’
‘Here?’
‘No, at home. Didn’t you pick them up?’
‘No. I thought you were dealing with that pile of stuff.’
‘At least we have plenty of mattresses,’ calls out Oliver helpfully, scrambling over six single beds to pop his head out of the truck. Eventually we find two child-size duvets and a couple of towels. Ellis and Oliver burrow in close to each other on one mattress while Darryl and I do the same on another.
In the morning, our new neighbours kindly locate the water tap and some friends arrive to help us unpack. By the end of the weekend the boxes have been emptied, a triple bunk bed built from scratch and the beginnings of a cubby house organised.
Our bach is an old cottage, renovated a decade earlier to include huge windows and just enough space to pack six kids and four adults into its three bedrooms. It sits on a road paved with bricks which, in summer, will be lined with street cricket matches. The beach is long and softly curving with uninterrupted views south and only a three-minute walk from the house, even when cautiously picking one’s way, barefoot.
This becomes our escape from the realities of day-to-day life. The most thorny decisions are between the surfboard and the boogie board, fishing rod or crab net and Speed Scrabble or ‘Scum’ after dinner. The kids roam the dunes, build forts, wander shoeless in years-old ripped pants, blackberry stained hands and a permanent grin on their faces. We use the outdoor shower all year, delighted by the sheer pleasure of showering under the open sky, even in the rain.
Of course, some realities we can’t afford to escape. Rather than trying to block CF from the bach, we make space for it, hoping to manage its demands rather than letting it manage us. We do physio and now nebulisers, knocking them out of the way early in the day, though not without the occasional foot-dragging. This time it’s Oliver.
‘I don’t understand why we have to do nebs every day now. I’m not even sick.’
The kids have recently started using a relatively new drug that is taken twice a day via a nebuliser for about fifteen minutes.
‘Because they help you get any gunk out of your lungs. If it stays in there it becomes infected. I know you’re not sick, but it’s to keep you from getting sick.’
The ‘new drug’ is called hypertonic saline and is just like it sounds—super salty water. The ocean is about 3% salt but the kids inhale 6%. In fact, it was thanks to the sea that hypertonic was discovered as a treatment for CF. A respiratory physician in Sydney noticed that his patients who surfed reported feeling much better and more able to cough after a surf. Research found that adding salt into the CF lung actually increases the airway surface liquid, allowing the little hair-like organisms called cilia (whose job it is to sweep the lungs clean) to more easily clear mucus and other foreign bodies from the lungs.
This isn’t the first time the ocean has been credited with helping people with CF. We recall Dr Cropp from California and his story of the crusty old sailor who lived into his seventies. Researchers have long pondered the potential benefits of a salty environment. We had hoped the sea would make a difference for our kids physically (in addition to what it might do for all of us mentally) and it does. Aidan’s sinus problems, at times debilitating, clear up after several days of dunking and somersaults in the salty waves. Thick coughs seem to move on more quickly when helped by the ocean. We shop around for second-hand wetsuits for everyone, encouraging family swims even in midwinter. When the weather is good we plan family triathlons, ocean kayaking and snorkelling, tipping ourselves into bed each night, worn out but elated.
Within a very short time the bach has become our own healing place.
16
RUNNING MATTERS
‘What are you doing, Oliver?’ I ask, watching him on his third trip out the back door in ten minutes, the fly-screen slamming noisily behind him each time.
‘Nothing.’
It is school holidays and until half an hour ago he was suffering from a shocking case of boredom. It was the kind of boredom that begins with a quiet whinny of ‘I’m bored’, rapidly ascending to high-pitched wailing and despair as the tedium sets in. The problem is that Oliver devours books faster than I eat my breakfast and, sadly for him, he has finished all of his library books and the library isn’t open until this afterno
on. For thirty minutes or so he writhed on the couch, desperate for a book, a game, a playmate, anything to distract him from the blanket of nothingness smothering him. But then, several minutes later he abruptly jumped up and took off down the hall to his bedroom.
And now he is focused. Carrying several large hardback books and a microscope, he bumps the fly-screen open again, heading for the back shed. Delighted to have the moaning and gnashing of teeth left behind, I don’t press him for answers. However, three hours later when he fails to appear for lunch, I investigate.
‘What’s up, honey?’ I ask, poking my head in through the door of the shed. Inside he has set up an entire miniature laboratory, complete with a rudimentary lab bench and homemade Petri dishes.
‘I’m working,’ comes the reply.
‘Oh. Would you like to take a break from your work to have some lunch?’
‘Maybe. I guess so. I haven’t made much progress yet.’
‘Oh, really?’
‘I’m trying to find the cure for CF, but I haven’t done it yet.’
‘That’s a great idea but it’s a big challenge. At least you still have the afternoon, so you can keep trying.’
‘Uh, huh. I will.’
True to his word, Oliver not only works the rest of that afternoon, but he continues for at least two hours a day throughout the following week of the holidays. Several weeks later he finally decides to dismantle his lab, accepting defeat.
At times Darryl and I feel comfortable with the progress of the very smart people who are trying to find a cure. But at other times we find ourselves twitchy and fretful about the future, particularly since reading Gawande’s article in The New Yorker. As Gawande pointed out, differences in quality of care can account for differences in life expectancy of more than fourteen years. That’s a big chunk of living to miss out on because of being at the ‘wrong’ hospital. And, at this point anyway, none of us know which hospital is the best place to be.