The Upside of Down (25 page)

Along the way we stumble upon an Australian study which sprinkles a fine layer of guilt over any moments we might spend on the couch with the TV remote in one hand and a glass of wine in the other. The findings show a link between the level of parents' exercise and their children's sports participation and cardio-respiratory fitness. In other words, barking at my children to get up and go for a run while I mull over the morning paper with coffee and a doughnut is generally going to have a low success rate. It turns out that the age-old ‘do as I do' parenting philosophy applies to exercise as much as other areas of life.

Running, with its great lung conditioning and do-it-anywhere simplicity, seems to be the ideal sport for the kids. So, we decide to start a bit of an intergenerational running campaign with Aidan. Perfect, as long as Darryl's willing to do the running part. I'm happy to mix up the Gatorade powder, provide post-run snacks, even wash the sweaty running gear. Plus I'll play any other sport they want—basketball, ultimate Frisbee, roller derby—just no running, please. To me, running is agony, step-by-step torture, a practice I swore I would never revisit once I was free of the reign of my former volleyball coach.

So Darryl and Aidan begin running consistently and with enthusiasm. We notice Aidan's lung function creep up a few notches until it's regularly close to 110% of normal. The system works splendidly for months until Darryl thoughtlessly pulls his Achilles tendon, knocking himself out of the running game for weeks. Without a partner to egg him on and to chit-chat during long sessions, Aidan begins to lose interest and his running shoes rarely come out of the closet.

We need to get Darryl patched up and running again. But, no matter how much ice, Voltaren gel and massaging we do to fix up his Achilles, he doesn't improve. He arrives home one night from seeing the physiotherapist, discouraged about the prognosis. He comes into the kitchen, leaning against the kitchen counter while I finish the dinner dishes.

‘She said this injury is going to take time to improve. She suggested some light swimming.'

‘What about light running? Did she say you can run at all?'

‘No running for a couple of months at least, maybe more.'

‘A couple of months … what are we going to do?'

‘Sue, you can run with him. You used to run a lot when you were a volleyball player.'

‘That was a long time ago. And I always hated it.' He's giving me one of those you-can-do-it cheerleading looks. I pretend not to see it, as I empty the dishwasher. ‘I only ever ran because my coach forced me, because I had no choice.'

‘Maybe there's no choice now either,' he adds.

‘Thanks for that. As though I don't have enough guilt in my life already?'

After a few days of soft but steady pressure from Darryl, I agree to try. The first step is the shoes. I contemplate soldiering on with the pair of Nikes in my closet, bought more than a decade earlier, but the left sole has hung loose like a flap of skin for years, slapping the pavement loudly with each step. Once I have some new shoes I fly solo for the first few runs, not wanting Aidan to see that I can't make it to the end of the cul-de-sac without scheduling a break for air and water. But eventually he joins me at 6:45am, confident and with a frightening pace. Initially he does all the talking; I can barely breathe much less discuss the progress of the Ashes. He needs more of a challenge than I can provide, so I send him off to run laps around me on the loop in our local park.

We continue this pattern for months, running three or four mornings a week, him powering ahead, me plodding along behind. This takes us right into the primary school cross-country season. When the first race arrives, he shocks everyone (including himself) by finishing second, qualifying to run in the district race a few weeks later.

***

‘Mum!' Oliver shouts, bursting in the back door from school and tossing his school bag on the kitchen floor at my feet. ‘You have to stop putting chocolate in my lunch—my teacher says it's bad for us.'

‘But it's not bad for
you
, Oliver. You know that. And your teacher should know—I've been telling him that since the beginning of the year.'

I realise our kids' diet requires an enormous mental shift for the healthy-eating focus of the teachers but, come on, the way they react you'd think that my dropping a square of chocolate in the lunchbox was on a par with lacing their morning tea with LSD.

I know that in most houses the parents are scaling back on the butter and cheese, but in our home we need to lay it on thick. With CF stealing so much energy, an extra bump-up from their food is essential. So I have become an expert at picking the highest fat snacks and lunch items: bacon, lettuce and tomato sandwiches with a thick spread of whole-egg mayonnaise; chips and nuts; avocados; full-cream yoghurt; homemade biscuits loaded with dried fruit, nuts and chocolate. If there's one tiny benefit from CF it has to be the ability to eat foods like this with no worries.

Of course, this is not the case for all members of the household.

‘Mummy, but can't I have chocolate for lunch?' asks Ellis. One glance at his impressive physique screams ‘future rugby player'. The high-fat diet in our house is probably contributing to his good growth. As Ellis gets older he'll need to be wary of wolfing down the bacon and burgers as Aidan and Oliver do.

‘Not for lunch, Ellis. It's not so good for you. Afternoon tea everybody!' On this particular day my friend Linda and her boys are visiting.

‘It's not fair for Aidan and Oliver to eat it and not me,' replies Ellis.

Overhearing this comment as he comes to the table, Aidan hops straight into the conversation. ‘Yeah, but at least you don't have to do physio!' This is becoming a regular seesaw in our house between the haves and have nots, the dos and the do nots. Every family has these skirmishes, I remind myself; ours is just of a slightly different form. Oliver's not missing out on the chance to join the gripe-fest.

‘Plus, you don't have to take enzymes, Ellis, which is a total pain,'

It's true that Aidan and Oliver swallow a trail of enzymes throughout the day, between fifteen and twenty-five in total, depending on what they eat.

‘Yeah, how do you cope with the enzymes?' whispers Linda. She has just witnessed our normal quick ‘back of the envelope' calculations to determine how many enzymes the kids should have for the snack.

‘It's pretty easy really. They can estimate the number of enzymes they need to take if I work out the fat content of the food: the higher the fat in the food, the more enzymes they need.'

She shakes her head, sipping her coffee, watching her kids and my own dig into the quesadillas. ‘It doesn't look easy to me.'

‘We've always done it. The trickiest part is getting them to remember. At the rate we're going, when Oliver is thirty-five I'll be showing up at his office at lunchtime with little packets of enzymes.'

Despite Oliver's congenital forgetting, both he and Aidan have always kept up with the growth curve—an enormous problem for some people with CF—and managed to limit tummy problems. Until now.

It's a rainy Monday afternoon in April when the back door is thrown open. Aidan, always first in the door from school, tosses his bag on the floor and hurls himself down next to it, curling into a ball.

‘Hey Aidan—what's the matter?' I ask.

‘My stomach really, really hurts, Mum.'

‘When did it start?'

‘About two hours ago, but it has been getting worse.' He has clearly been trying to hold it together at school, but the front is collapsing now he's home. Turning his head up to look at me, he has tears in his eyes. ‘Mum, can you do something, please?'

I try everything I can think of, but nothing relieves the severe abdominal pain. Eventually we call the Children's Hospital. ‘Bring him in if he starts to vomit,' they reply. Around dinnertime we reach that milestone, heading in to the hospital. An X-ray in Emergency shows that he is completely blocked up: his intestinal system, normally a freeway, has suddenly become a parking lot. This is not uncommon for people with CF. We're told he'll need to be flushed out, more like a steady flooding, which could take five days. A nasogastric tube is required. Like it sounds, this tube runs up through the nose and down into the stomach. It doesn't require a medical degree to figure out that getting the tube in could be a nightmare. In fact, it's worse—years later Aidan will describe it as ‘the worst thing that ever happened to me at the hospital.'

After the tube is inserted we are taken to the ward, arriving around 11pm. To our surprise and relief, Oliver's former nurse John is on duty again. Around midnight Aidan wakes up and vomits. That's bad enough, but I panic when I realise the prized nasogastric tube has come along for the ride—and is now out of his nose and flopping about casually on his chest.

‘Oh, no … Oh, no, shoot, shoot, shoot,' panic pouring from my mouth as I run to get John. ‘We can't put him through that again, John. We just can't.' He says nothing as we jog back down the hall.

By the time we reach the room Aidan's stomach has settled again. After a few minutes of clean-up, Aidan's nearly back asleep. Then I notice John gently pick up the tube, eyeing my son's nose.

‘John, I really don't think that's a good idea.' I know that tube has to get back in—Aidan won't get better without it. But I can't imagine forcing him to repeat the trauma that he went through downstairs. And I'm not confident I'll get through the procedure again. I've always had a low tolerance for medical ‘stuff'. How my sisters all became nurses is an absolute mystery to me.

‘It's all right,' he assures me, ‘I'm just having a look.' Feeling faint, I know I need to get horizontal. Now. Dropping flat on my bed, I dig desperately for control of both my stomach and psyche.

‘Are you okay, Aidan?' I ask, without lifting my head off the pillow.

‘Uh-huh.'

It's quiet for a few seconds and then I hear one big, quick breath. That's worrying. As I look up, John's standing up from the edge of Aidan's bed.

‘There. All done. The tube just slipped right back in.' He begins washing his hands at the basin. Aidan gives me a weak smile before sinking his head into the pillow, asleep before reaching it. He's fine and it's back in, which is a huge relief. But the sight of the white tube still makes my head spin again.

‘Are you okay now, Susan?' asks John.

‘I'll be fine,' I say without opening my eyes or raising my head.

The rest of the week passes much more easily and five days later we're discharged. Something's not right though, with the abdominal problems persisting. We're in and out of Emergency three times the following week.

On the Friday morning of the next week the gastroenterologist schedules a series of CT scans, complete with a dye for Aidan to drink and a simultaneous IV. The doctor is hoping to confirm the problem was a blockage and nothing worse. Estimating the dye's time of arrival in the gut is tricky and unfortunately the scan is done too early. The nurse tells us we will have to wait thirty minutes before re-scanning.

‘But Mum, my race is at one o'clock. We need to leave really, really soon.' Aidan can barely hold back his tears.

It's the day of the district cross-country race that he qualified for several weeks ago, before the abdominal problems began. Despite last week's hospitalisation and the repeated trips to Emergency, the goal of running today has never left his mind. Earlier in the week when the doctor suggested readmitting him, Aidan begged for other options, knowing he couldn't run from his hospital bed. We have discussed the race with his doctor, who felt it was safe, but thought it unlikely Aidan would feel able to do it.

He doesn't know this boy.

I've been trying to manage his hopes, playing the pessimist so he wouldn't be disappointed. I still have fears about letting him run. But the radiologist overhears our conversation.

‘What race, Aidan?'

‘The district cross-country. It starts in an hour.'

‘Uh oh, we had better get you finished then. Come with me,' he says, leading Aidan immediately back into the scanner.

At 12:15 the two of us are sprinting out of the building to the parking lot. It will take at least thirty minutes to get to the course. Traffic is heavy, we're both fretting and my recent noble effort to delete ‘shit' from my vocabulary is in tatters by the time we arrive at 12:50. Aidan opens the door, jumping out to find his school group. A huge cheer goes up when his classmates spot him. Already emotional, this spontaneous show of support sends me dashing back to the car for tissues. Aidan has just enough time to stretch before lining up with the ninety other boys in his two kilometre race.

When the gun goes I begin my pleading.

Please, please, please can he just finish the race … not collapse … not put himself back in hospital … feel happy about it
.

A call from Darryl interrupts my begging monologue.

‘What's happening? How's he going?'

‘I don't know. The runners have just disappeared into the trees. Darryl, what if he doesn't make it to the finish line? Maybe it was a stupid idea to let him do this.'

By now most of the mums are huddled together in a spot with a clear view of the finish. I join them. Many know what we've been going through and are asking after Aidan but I'm far too nervous to talk. Darryl's still on the phone.

‘Sue, what's going on? Can you see anybody? They should be coming in soon.'

‘No. They're not back yet. I can't cope with this. I think I need to go to the toilet.'

‘You can't go now!' Darryl practically screams down the phone.

‘Hey, there's the leader!' one of the mums yells. Behind the leader we can now see a small pack slowly coming into view.