The Upside of Down (24 page)

Just six months after arriving in Australia—this massive, gentle-giant of a country—we're beginning to feel at home. We have traded our Renault for a Holden, rigid etiquette for warm and welcoming barbeques, a strict medical culture for one more child and family-friendly, a busy urban environment for Huntsmen in the house and Tiger snakes in the garden (thankfully not yet). We have lost views of the Seine and the Eiffel Tower from our window, gaining empty, untouched coastline and wild, open spaces for our children to explore. Any longings for buttery, garlic-infused
escargot
or delicate
mousse au chocolat
are balanced by Kung Pao chicken in a Chinatown alleyway, fresh ravioli on Lygon Street or even a steaming sausage with onions on a cold, wintry day at the local Australian Rules football ground.

The trade-offs we have made aren't necessarily even, one-for-one, like exchanging a size twelve cardigan for a size fourteen. No, it's more like returning the sling-back sandals for knee-high boots: both useful, but for different seasons. Although early days, our Australian season looks to be an excellent fit.

14

CARE MATTERS

It's 7:30am on a Monday morning, a school day. In the midst of making lunches and pulling out the Cheerios, I'm chasing after a now six-year-old pyjama-clad Oliver while holding a little plastic jar in front of him.

‘Okay, honey, can you give me a really big cough?'

He does a pathetic little whimper of a cough, like he's clearing the tiniest speck of dust from his throat. ‘There,' looking up with a satisfied grin. He's playing me with all the skill of a concert pianist.

‘Come on, I need something bigger than that, you know, the kind of coughing you've been doing all weekend.' He does a slightly bigger one just to appease me. ‘Great, now spit! In here, Oliver, into the jar!'

Asking him to cough something up and then spit it with enough accuracy to hit the shot-glass size jar is optimistic. But we have to try. Over the weekend he has developed a cough, setting off our worry monitors. Darryl drops the sample at the hospital later that morning. We'll talk to his doctor in three days to find out if any bacteria are growing in his lungs.

That night after putting the kids to bed Darryl and I sit down in front of the fire with our books, cups of tea and the day's mail.

‘Here's a letter from your dad, Sue,' he says, passing a thick envelope to me. ‘Looks like there's something else in there too.'

My dad has been writing me between one and two letters a week since I left for college more than twenty-five years ago. He keeps me updated on the family's comings and goings and includes local news—brides, births and burials—and other items of interest. Opening the envelope, I can see that this week's offerings include an article from
The New Yorker
magazine. ‘It looks like it's about CF. It's an article called
The Bell Curve
.'

Written by American surgeon and medical writer Atul Gawande, the piece is fascinating. Addressing the broader question of differences in quality of healthcare, Gawande takes an in-depth look at cystic fibrosis clinics across the U.S. Over the years Darryl and I have read many health-related articles—research, personal stories, inspirational or cautionary tales—but this one is different.

‘Listen to this, Darryl' as I begin reading to him:

‘
It used to be assumed that differences among hospitals or doctors in a particular specialty were generally insignificant. If you plotted a graph showing the results of all the centers treating cystic fibrosis—or any other disease, for that matter—people expected that the curve would look something like a shark fin, with most places clustered around the very best outcomes. But the evidence has begun to indicate otherwise. What you tend to find is a bell curve: a handful of teams with disturbingly poor outcomes for their patients, a handful with remarkably good results, and a great undistinguished middle
.'

It turns out that Gawande chose a perfect illness for a case study on quality of care. For over forty years the US CF Foundation has been collecting detailed data on lung function, nutrition and life expectancy from specialised centres. They know which centres have good success at these things and which don't.

‘Oh, wow. Darryl, listen to this:

‘
By 1966, mortality from CF nationally had dropped so much that the average life expectancy of CF patients had already reached ten years. By 1972, it was eighteen years—a rapid and remarkable transformation. At the same time, though, Matthews' center had got even better. The—
'

‘Hang on, who's Matthews?'

‘He's a CF doc from Cleveland. He was treating kids aggressively back in the 1950s and 60s. In 1957 his patients were living to twenty-one while across the rest of the country they were still dying at age three! Anyway, let me finish reading you this.

‘Matthews's center published its results. By the early nineteen-seventies, ninety-five per cent of patients who had gone there before severe lung disease set in were living past their eighteenth birthday. There was a bell curve, and the spread had narrowed a little. Yet every time the average moved up Matthews and a few others somehow managed to stay ahead of the pack. In 2003, life expectancy with CF had risen to thirty-three years nationally, but at the best center it was more than forty-seven.”'

‘Sue, that's fourteen years difference!'

‘I know. I know. What's really amazing is that he's not talking about fourteen years between the best and the worst places: that difference is between an average hospital and the top. The difference between the top and bottom would be even more. He says that while lung function for children at an average centre is about seventy-five per cent, at the top centres it's … quote
indistinguishable from that of children who do not have CF
.'

We're both quiet for a few minutes before Darryl speaks. ‘We have got to make sure that the care we're getting allows our kids to have lungs like that …'

Three days later we get the news from the hospital that Oliver's lab results have come back clean so his cough is probably just a run-of-the-mill virus. The release in tension is palpable.
Thank you
. False alarms are always worth celebrating. In fact, we have begun celebrating good news any chance we can. Partly it's true gratitude. Partly it's a way for us to maintain our optimism. Living well with CF means we need to build up our family's strength and positivity. Our celebration that night consists of two extra-large, super cheesy pizzas for dinner and ice cream sundaes for dessert.

***

‘Aidan, please come and do your physio,' I call from the kitchen.

Our physiotherapy has changed with time. It no longer requires clapping Aidan and Oliver's back and chest like smacking shoes together to release caked mud. Nor is there a Jean-Pierre to do his CPR version of physio. Instead the kids do a series of long blows into a small positive pressure mask, helping to briefly splint open the airways, followed by huffs and coughs. It takes about fifteen minutes to do properly, an hour in total if you include the forty-five minutes of badgering and moaning.

Five minutes later I yell out again, ‘Aidan, let's go. It's nearly dinner. Come and do it right now.'

This is one of those things I vowed I'd never do as a mother: stand behind the kitchen benchtop with an apron, peeling potatoes and hollering orders around the house to rally the troops. At least I have managed to avoid the apron.

Finally, Aidan appears from down the hall, book in one hand. Slowly—so slowly, in fact, it's not at first clear that he's moving—he climbs on the kitchen stool. Then he begins to speak, deliberate and grouchy.

‘Nobody else I know has to do physio.'

‘What about Oliver?' I can't resist.

‘Very funny. Apart from Oliver. You know what I mean, Mum.'

‘Yeah, I know. And you're probably right. But they may have something else going on.'

‘Like what?' he asks.

‘Most people have something they don't like. Think of the kids at your school with nut allergies. Or the boy with diabetes.'

‘Yeah, but I bet they don't have to do as much as I do.'

‘Probably not.'

‘See what I mean?' he adds, point proven.

‘I know.'

He's right. I can't think of another kid who does anything near what he does just to stay healthy. I hesitate for a few minutes then continue. ‘Look, I agree having CF is rotten, really rotten. But at least we can fight it by doing things that help keep you well.'

I know the futility of my words. This argument makes perfect sense to an adult but means nothing to him, an eight-year-old who looks and feels fine. It's like trying to convince a young Lleyton Hewitt not to hammer his knees and shoulders on the tennis court or they may let him down when he's twenty-eight.

‘What's the point of trying when I'm going to die at thirty anyway?'

This isn't the first time he has said this. The first time nearly flattened me on the spot, like an electric prod to the heart, kicking off an emotional spiral that lasted several days. Hearing this from his mouth is still almost physical pain, like an acceptance of what I've fought so hard not to accept. But I now know that it's more a comment intended to get a reaction from me rather than an admission of defeat from him.
Breathe. Help. Breathe. Pray
.

Squashing Aidan's worries or emotions won't help: I have to let him work through his own frustrations. His illness can cast a big shadow, one he has to learn to live alongside in his own way. So sometimes I reply to this comment with: ‘I'm sorry you feel that way.' Or ‘I feel more hopeful than that.' Or ‘God, you are driving me nuts!' No, not that one.

But today I answer, ‘You know, Aidan, people are working really hard to find a cure so that hopefully you can live far longer than that.'

‘Yeah, I know, you tell us that all the time.'

‘Okay, but when the cure is found it will work best if your lungs are in good shape. So we need to protect them.'

Eventually, after plodding off down the hall for a different book and complaining about the injustice of having to do treatments before dinner—when he's ‘starving'—he finally starts physio. I could view it as a victory, but the real victory will come when he starts deciding alone to prioritise his health. We're not there yet.

***

‘Mummy, help me,' says Ellis. He has managed to put one shoe on and is holding a tangle of laces in his chubby toddler hands.

I grab the left shoelace while he shoves on the other shoe. I have a screaming headache and feel hounded by the To Do list that my life is becoming. And then it happens. As always, it's just before leaving for school or kindy, just before we will be late, and just before my patience snaps. It is probably my fault for pulling too tightly, rushing, then suddenly, SNAP!

Sometimes that little snap can feel so big.

We break a lot of shoelaces in this house—a lot more than I would have dreamed possible for just three young boys and a couple of frazzled parents. Maybe it's because we rush too much. Or splash in deep puddles with shoes on. Or play in sandpits full of scratchy, sharp sand. Or maybe they just don't make shoelaces like they used to. (Or maybe they don't make mothers like they used to. Did my own mother really need to keep a drawer full of back-ups?) Whatever the reason, we spend a lot of time around here dealing with broken shoelaces.

Shoelaces always break at a bad time and without warning, or at least before I notice that the edges of the laces are frayed and about to blow.

It's a lot like me. I regularly find myself balanced on the spiky edge between coping and breaking. And I never see any yellow flashing light, warning me, ‘Look out, you're about to topple!' Maybe the kids notice it, probably Darryl does. I suppose if I looked closely I'd notice the shortness in my tone of voice, the tension in my shoulders reaching to my lower back, the absence of laughter.

Is this the far reach of chronic illness worming its way into my heart, pushing me until I feel desperate? Or is it just the normal, constant nature of parenting that's so wearing, like that sharp sand on the shoelace? Looking at other parents, I see many of the same profound worries and responsibilities attaching themselves parasitically to these mums and dads, unrelenting; even when the kids are off happily living their lives, their concerns linger.

If it's only chronic illness, only CF, only me, I'd rather not know it. It will leave me isolated. And, like I tell Aidan, most people have hard things in their life. Looking around at my friends, I see divorce, depression, illness. Oh yes, we're a bundle of laughs. In fact, that bundle of laughs is one place I turn to when everything starts to disintegrate. My friends give me perspective and hope, plus plenty of homemade lemon slice and minestrone soup. Invariably, when I'm dangling by one last string, one of them will call with ‘Just wanted to see if you were okay.' Or to offer or ask for a school pick-up or drop-off. I need these fragments of shared life, the give and take, the communal raising of our kids, although sometimes I still shuffle away from it, fearful of becoming a burden when our life sails out of control. These friends are my strength when I'm stretched to breaking.

***

Darryl and I have been working up a mighty sweat together since the day we met. On the court, the bike or in the pool, sport has always been part of our shared life and a source of real pleasure. So it's not unusual that family sport is a high priority for us, including runs and skates along the Yarra River, extended bike rides, swims, Aussie Rules football and soccer matches. Yet sometime over the past few years we have become more and more convinced about the importance of activity for Aidan and Oliver, causing us to fan the flames of enthusiasm for anything that makes them move. Our Saturdays are split between hockey, soccer, cricket, swimming and cross-country.