The Upside of Down (26 page)

‘There's a red shirt. It's Tom.' Another boy from our school, Tom is an excellent runner. ‘Hey, there's a second red shirt in that front pack. Who's that?' asks another mum.

The toilet is beginning to whisper my name again when someone else calls out, ‘It's Aidan! Susan, I think it's Aidan.'

Unbelievably, she's right. I can see his sandy-white hair clearly.

‘Darryl, Aidan's in the leading group,' I say quietly. ‘I can't believe it.'

The pack of mothers arrives at the finish just as he crosses it. I greet my exhausted boy with tears of joy, relief, pride. Several of the other women are crying as they hug me, understanding the considerable accomplishment this represents. He has finished in tenth place, qualifying for the next level of competition and obliterating my fears and ohso-limited expectations.

15

HEALING PLACES

It's the middle of winter in Melbourne; the days are bitter cold and seem perennially dark with the flu season fully upon us. Before moving to Australia, I assumed winters here wouldn't be harsh. I thought winter would be like October in San Diego with beautiful sunsets and just the need for a dainty three-quarter-sleeve cardigan after dark. But, oh no, this is a ‘can't live without your scarf and coat for three months of the year' type of winter. My misconception was probably Grant's fault. Darryl's older brother lived in Sydney for seven years, leaving shortly before we arrived in Australia. He always described Sydney as having only three seasons, winter not being one of them. As I have learned, Melbourne is not Sydney.

So we have decided to escape, to leave the chill, the wet and the rampant illness behind. The five of us are boarding a plane for the Cook Islands, a smattering of fairy-dust size islands in the heart of the Pacific Ocean. Rarotonga, the capital and largest island, has one ring road which you can drive in less than an hour—no traffic lights and barely paved—and a broken halo of pristine coral circling it. The island also has chickens roaming everywhere, as though it's some kind of communal barnyard.

We ignore the Hyatt, instead renting a basic weatherboard house on the far side of Rarotonga. It is twenty-five steps from our back door across dusky pink sand until we're wading into water so clear I can spot the freckle on my ankle when standing chest-deep in it.

The people here seem unable to wipe the grin off their faces, as though they're all in on some running gag. They chat, wave, slap each other on the back and welcome us with broad smiles. The friendliness and warmth is a relief from the head-down-middle-of-winter mentality in Melbourne. One friendly local a few houses down the beach offers us unlimited use of his kayak. Our elderly next-door neighbour spots Aidan wobbling tentatively on Darryl's shoulders in our garden, grabbing in vain at coconuts. She rushes out of her house waving a long stick and calling out as she approaches them.

‘Be careful there—you'll never get them down that way!'

Darryl, the mastermind of a litany of half-brained schemes with our kids, looks embarrassed, caught in the act. In fact, he's wearing the same expression as the time he was towing Oliver's bike behind his own on a bungee cord and Oliver crashed into a parked Rolls Royce. Or the time he mounted the inflatable swimming pool on the trampoline and filled it with water and dishwashing liquid. He and the kids all slipped and skidded around until the entire trampoline flipped over on top of them.

I'm enjoying watching him squirm.

‘Uh, I was just hoping to pick a coconut so my kids could taste a fresh one …' The island is littered with coconut trees.

‘The only way to do it is using this,' she says, pointing at her stick with its two menacing metal prongs on the end. She hands it to Darryl, explaining how to get behind the fruit and detach it. After several tries he manages to drop one to the ground. She picks up the heavy coconut, firmly jamming the stick into the ground and turning to Darryl.

‘Now, use the end of this stick to peel back the shell.'

He loves this. Brimming with confidence, as if he's about to peel a mandarin, Darryl takes the coconut and tries to plunge it into the stick. Again and again he's knocked back. Eventually I try. No results. Patiently she gives us further instructions as we attempt to break through to the sweet milk. We can't do it. Although half our height and twice our age, she breaks it open with ease. As she's walking back to her home she turns with one last word of advice:

‘Make sure you don't do any napping under a coconut tree because people are regularly hit by falling coconuts and killed.'

We assume this is one of those jokes the locals put on tourists, like drop bears. Later research confirms that the risk of getting creamed by a coconut is a widely held belief amongst locals and tourists, while the number of deaths (regularly tossed about on the internet as 150 per year) is unsubstantiated.

The warm, wet climate creates a lush and varied landscape. We rent a jeep and explore the undeveloped island. It's a study in contrasts with the unexpected lime green mountains in the centre, frequently soaked in drizzly rain, surrounded by untouched pale beaches. We hike the mountains, snorkel off our own beach and swim out to a small island in a heavy afternoon rainstorm, pulling the kids behind us in the kayak. When the rain lingers we retreat inside to work on puzzles and read. We are shocked by the inflated prices for food, especially fresh produce, dairy or meat, all shipped from New Zealand which is over 4000 kilometres away. The kids beg for a bag of frozen chicken nuggets at the grocery store; I'm half-tempted until I notice the price tag reads NZ $28.

Once again there's an undercurrent of illness but this time it's Ellis. Raising a child who doesn't have a chronic condition has been a significant change for us. The few times he has been sick it has felt very manageable. Maybe too manageable. I sometimes worry that we're not attentive enough to his medical needs, tossing away any concerns, unwilling to be drawn into the medical system with him. But now action is unavoidable as he's coughing and spluttering. We go looking for help when he spikes a fever. A couple of long-staying tourists direct us to the kind woman who sells a tiny selection of overpriced grocery items and home-grown veggies from her front door. She phones the local doctor for us.

‘He'll be around in an hour or so,' she reports. We buy some Panadol from her, about the cost of a reasonably priced meal in Melbourne, and head home to wait. Soon the doctor arrives with his nurse and black bag. He's about sixty, a Cook Islander, gentle and in no rush, chatting as he diagnoses pneumonia. We're both fairly relaxed—too relaxed? I wonder again—about his diagnosis, confident that Ellis' normally healthy lungs will respond to treatment. The GP leaves without taking any payment, promising his nurse will return with medications and sort out the money later. She does and Ellis recovers quickly.

On our last night in the Islands Aidan develops an earache. This hasn't been a concern for Oliver, but Aidan has had frequent difficulties with his sinuses and right ear. Once again it's his right ear which is progressing quickly from a niggly ache at four in the afternoon to crushing pain and a river of tears by dinnertime. Our flight out of the country leaves absurdly early the next morning: the taxi is coming to get us at 3:30am. We try the pricey Panadol, heat, distraction but nothing helps until finally around nine o'clock that night Aidan bounds happily into our bedroom like he's just returning from a birthday party.

‘It burst. My eardrum burst!'

‘Are you sure?'

He's holding a tissue to his ear. ‘Yeah, there's stuff oozing out of it,' showing me the wet tissue. ‘And the pain's gone. Totally gone. I feel fine now.' His eardrum has burst about a dozen times in his life which is not a great result, but unavoidable when it advances so quickly. The first few times it happened we panicked until the specialist told us that she doesn't worry about long-term impacts until the eardrums are bursting a dozen times
per year
. At least we'll be able to fly back to Australia in the morning as the risks and pain associated with flying both disappear once it ruptures.

***

One afternoon a few months later I'm putting plates of watermelon and chocolate brownies on the table for a herd of hungry boys, mine and a few of their friends, when the phone rings. It's Sarath, the kids' lung doctor from the hospital. After brief pleasantries and before I can even make it to a chair (my knee-jerk reaction when the hospital calls), he gets straight to business.

‘Look, I'm sorry to have to tell you this, but both Aidan and Oliver have grown pseudomonas in their latest sputum sample.'

‘What? How can that be? I really … I really just can't believe it. I mean, they seem fine.'

Pseudomonas is a problematic bacterium; the majority of CF adults have the bug permanently in their lungs. Aged now ten and almost eight, neither of the kids has ever grown it and this is probably one key reason their lung function hasn't dropped at all.

‘It's a bit unusual since they're not coughing, but hopefully it means we've caught it early.'

‘Why do you think they both have it? Is it that contagious?'

‘It can be. Or possibly they were both exposed to the same source in the first place.'

After some discussion we agree they should have an eradication treatment in the hospital. Clinical research has found that it's possible to slow or even prevent pseudomonas getting a foothold, but it must be hit hard with plenty of antibiotics. Sarath explains what this will mean.

‘They'll need two weeks of IV antibiotics and intensive physiotherapy in the hospital.'

‘Yeah, okay. When?'

‘How about tomorrow?'

A few hours later after Darryl gets home from work, we call the boys in from the backyard where they're in the middle of a complex trampolining game. We explain the situation to them.

‘No way, I'm not going. I don't want to miss school and everything,' Aidan responds immediately. We had feared this would be his reaction.

‘I know it's not what you want—not what any of us want, Aidan—but we have to do it.'

Before having kids I would have thought that ‘No, you can't attend the unchaperoned party' might have defined difficult discussions with your kids. I didn't foresee this conversation.

‘This is a serious bug and it could make you really sick. If we don't treat it now it might be much, much harder to get rid of later.'

Oliver has different worries. ‘Am I going to need an IV?' Darryl nods. The tears begin to form in his eyes. ‘But I hate getting the line in. I can't do it, no, I really don't want to.'

‘It will be okay. You've done it before and you've been so brave. We can put the cream on so the needle doesn't hurt.' Oliver doesn't look convinced, but Darryl continues with the sales pitch. ‘We'll be there with you. Let's not worry about it until tomorrow, okay?'

Darryl and I decide we want to try and keep the family together as much as possible these two weeks. It will be a little tricky to do, particularly with juggling Ellis. Luckily we have some great friends, real ‘our house is yours' people, who live around the corner from the hospital. Karen and Rod immediately invite us to base ourselves with them so we can rotate round-the-clock between the ward, their house and, for Darryl, his office. Ellis is thrilled with the idea of staying there at his friend Annie's house.

Before leaving home in the morning we blindly carry out all of the normal departing routines, as though heading off on holiday: ask our friend Liz to feed the chickens and collect the eggs, pack the bags including special blankets and toys, water the plants, close the curtains, double-lock the doors and coax the kids into the car.

For many families who live with CF the hospital ward is like a second home, the IV pole a constant companion, nurses good friends, and doctors known on a first-name basis. But for years we've been fortunate, missing all but the occasional hospital overnighter since coming to Australia. It has been almost three years since Oliver's last admission, the one that involved the MET call, and Aidan has only had one stay, for his stomach. For us, the ward remains an unfamiliar place, a strange and spooky place that we have visited only rarely.

We know the rest of the hospital though. We're there for appointments, for X-rays, blood tests, scans and always McDonald's. The ticket-man at the parking lot knows us: in my rush to leave after appointments I repeatedly forget to pay inside but he's kind and patient and pretends not to mind. The place has always felt like some kind of cranky 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 plenty of rules, early bedtimes and overcooked broccoli.

As we arrive on the ward the oddness of hospital life floods back at me like a dreadful déjà vu, despite the staff's friendliness.

‘Hello, you guys must be Aidan and Oliver,' the young nurse bubbles at us from behind the front desk. ‘Come on, I'll show you where your room is.'

She's chatty as she leads us down the hall, pointing out the key sites along the way. ‘Mum and dad, here's the parent lounge. You can get a cup of tea or coffee in there. There's also a communal fridge and a TV.' A bit further along she shows us where we can find sheets and blankets for the parent bed. Finally, we arrive at our room. Oliver runs in, excited.

‘Look! We've got a perfect view of where the helicopter lands. This will be great!'

Even Aidan is now appreciating the benefits of the fortnight ahead. ‘At least I've got my own TV.' And with a sidelong glance at his parents, wondering just how far he can push it, ‘I'll be able to watch TV all day long if I want to.'

The nurse pops back into the conversation, handing Aidan a plastic binder. ‘Here's a list of all the DVDs we have so you can pick out whichever one you want to watch.' At this, Aidan can't contain his glee, letting out a squawk of pleasure.