The Upside of Down

by Susan Biggar

  ‘Yes, luckily he does look well; so does Aidan. But they’re also still quite young and it’s a slowly degenerative illness. We work hard to keep them healthy. Thankfully there’s a lot of excellent medical research taking place; I guess you’ll hear about that tonight,’ I add with a slight smile.

  Realising that her faux pas has now been confirmed, she runs. Leaping up from her chair, ‘I really must go find my younger daughter now—I have left her on her own for far too long. She’s only two, you know, and who knows what she could be getting into—bye!’

  Unfortunately for the woman, as she rises and tries to make a rapid escape, she nearly trips on her missing daughter who has deposited herself at her mother’s feet. Scooping her up, ‘Let’s go now, Emma, we should really be going,’ she calls out to everyone and no one as she sprints towards the door. I pull Oliver close to me, relieved to see the woman making steady progress across the flat, high-stepping over four-yearolds, grabbing her elder daughter and waving a quick farewell to the host.

  I have never before considered the conversations about our family which must occur from time to time. How do our friends and family describe us? Do they say: ‘We have friends who have two kids with CF. What a hard life … they’re amazing … they’re crazy …’? What do they see when they look at our lives? Do they see what she saw: ‘terribly depressing, sick, sad stories, thin, coughing’? It’s unlikely, given that right now Aidan and Oliver are bright and chirpy and look perfectly ‘normal’. Maybe I deceived this woman, appearing content and reasonably balanced. ‘How can this mother be happy’ she might have thought, ‘living with the spectre of death?’

  But the real shake-up for me is the pity and revulsion she obviously experiences when thinking about sick kids, a hellish thought which probably panics most parents. I might have had the same reaction as her before I entered this world. But now two things separate me from her. One, I have had time to adjust my worldview, learning to search out joy amongst the uncertainty. Two, I have no choice because this is our life.

  ***

  When our second summer rolls around, we pool our friends’ advice, study the maps and pack our bags. This time we’re heading south. The stories we hear from people are impressive—and worrying.

  ‘We searched for twenty minutes on the beach before finding a spot large enough to lay our towels.’

  ‘I’ve seen syringes floating in the water. I would never swim there.’

  ‘I sat in a traffic jam for an hour without moving ten feet, just outside of St. Tropez.’

  And this is my personal favourite. ‘The water is so warm there in August because millions of Europeans pee in it in July.’

  The South of France, the French Riviera, Côte d’Azur—it goes by many names and is equally despised and adored. This combination of hatred and praise for one of the world’s most famous slices of white sand draws us to it. Can we live in this country without tasting the pleasures, or pains, of its southern coast?

  The night before leaving, we trawl through our cave for beach accessories from our New Zealand life. The cave is just as it sounds: a pitch-black room in the basement of the building, one cave for each apartment. It’s the American garage and attic all rolled into one skinny, tall, concrete booth. I would have said ours was crammed too full to fit even a mouse, until one snuck in and died, forcing us to unpack the whole mess to remove the carcass and its accompanying odour. On this night we gingerly pull out masks, snorkels and sand toys—like a game of Jenga—hoping the rest doesn’t tumble out with it.

  The alarm sounds at three in the morning.

  ‘Darryl, this is crazy,’ I moan, groping around in the dark for the alarm. ‘Maybe we should leave at eight instead.’

  At this suggestion he snaps upright, flicks on the light and hops out of bed as though the Sergeant Major has just entered our bedroom.

  ‘No, we agreed to this plan and we should stick with it. Without air conditioning we’ll be dying in the car by mid-afternoon.’ Although he’s mounting a fairly strong argument I continue to lie comatose in bed while he dresses hastily. When he returns from the bathroom to find me in the same position he launches into phase two of the argument.

  ‘Just imagine nine hours with the kids awake and Aidan asking ‘Are we there yet?’ and ‘How much longer?’’

  That one hits home and I’m up and making the bed ten seconds later. We slide two sleeping boys into their car seats, the only gaps in the back of an overstuffed car. The kids sleep until seven o’clock and by the time we stop for breakfast an hour later, we’re past the halfway point.

  By midday, after too many hours sandwiched in our Renault, the back seat passengers are not happy. And, therefore, neither are we. I’m ready to book Darryl in for a vasectomy when Aidan calls out, ‘Look at that big blue thing, Dad. Is that the South of France?’

  The sea is translucent, mesmerizing. We pull over to watch it breathing—in and out, up and down. Even the backseat moaners pause. The Mediterranean fills our line of vision. It’s everywhere. And, so far anyway, there isn’t a syringe in sight.

  ***

  The main road along France’s south coast is two lanes, curves like a Formula One track, and has to-die-for views. It’s not difficult to imagine it converted into a parking lot every summer once holiday time sets in. In fact, the lead story on the French news the day school finishes in late June is always about the traffic tailbacks dozens of kilometres long leaving Paris, heading to the beach and countryside.

  Holiday time is an ironic part of life in France. The government regulates a minimum of four weeks paid annual leave for all workers, though many people receive plenty more. Yet the schools are draconian about school absenteeism, not allowing it at all, ever, for any reason. French parents recount to us stories of the consequences of breaking this rule: ‘We took the kids out of school to go to Canada for three weeks. Our son’s teacher chewed my ear off when we returned and the principal ignored us for six months.’

  In the end, because of an enchantment with the empty off-season Côte d’Azur and annual trips home to the U.S. or New Zealand, this is a rule our family continually flouts without repercussions. This surprising leniency towards us may be compassion because of our distant families or fear of offending the foreigners. Either way, it turns out there are advantages to being an outsider.

  On this day in early June the masses are still at school and we’re only joined on the road by a few cars sporting Belgian, German and Dutch number plates. From the cliff-top road we can see the bleached beaches dotted with just the occasional sunbather. Luckily I’m driving, as Darryl is distracted by the presence of distant monokinis. We had heard of this poor cousin to the bikini but are unprepared for the fact that women of all ages and cup sizes abandon their tops upon reaching the Mediterranean. It becomes a flashpoint for the two of us, who differ dramatically in our enthusiasm for the practice.

  ‘Okay Darryl, how about dragging your eyes off the beach long enough to find out where we’re going, please? The Rough Guide is in my bag. What does it say about Cavalaire, the town where we’re staying?’

  He pulls out the book and begins to read generic information about the South of France.

  ‘I don’t think it mentions it. No … here it is.’ He’s quiet for a moment. ‘Uh, it describes it as ‘a choking, hideous sprawl’.’

  ‘Oh, no. Why didn’t we think to read up before we booked this?’ We drive along in a silent dread for fifteen minutes. Finally, the car comes around a sharp bend revealing an empty expanse of white beach: the Baie de Cavalaire.

  Darryl shakes his head. ‘Okay, so maybe we’ve been living in crowded Paris so long that we can’t recognise “choking, hideous sprawl”. Or maybe that travel writer has spent the past decade on an empty and remote Pacific Island.’ The only stores are a small boulangerie and a fruit shop. The town’s architecture has strong Spanish influences and there doesn’t appear to be a third floor in the whole settlement. The houses are scattered around the hills, peering
through dense trees and scrub. The mountains rise up steeply behind the town. Our temporary new home is a Spanish-style adobe villa with cool terracotta floors and bougainvillea streaming down to its three generous patios. We spend our days floating sublimely in the sea, playing in the sand, strolling on uninhabited beaches. Aidan is in a nude phase of life and after several days of arguing over bathing suits he wins the battle, spending the rest of our beach time clothed in only a hat, sandals and a heavy slathering of sunscreen everywhere else. Oliver, who’s nearly one, has opposite issues and is desperate to be wrapped tightly in towels; he waddles around the beach like a penguin as the nearby Germans shake their heads.

  It’s hard to pin down the moment when we realise we love the place, or why it happens at all given the mountain of negative reviews. Is it the vacant beaches or the serene mood? Maybe it’s the luscious water stretching dreamily across the horizon. Or possibly the simple pleasure of eating every single meal outside, not worrying about spilled orange juice or mushy Sultana Bran ground into the carpet. Cavalaire becomes our perfect little world where the sky is always blue-blue, the water warm and the kids fall asleep while we’re putting on their pyjamas. At the end of long days of sandcastle-building and inflatable-boating, a chilled glass of rosé awaits us. Darryl and I watch the first stars appear, lounging under the bougainvillea with nothing to interrupt the silence.

  ***

  Unfortunately, as the holiday progresses a tiny crack of worry grows. Oliver has a cough.

  It begins innocently enough. It always does. But the cough continues to increase in frequency and intensity despite the antibiotics and the physiotherapy and the prayers. By Wednesday, it’s ubiquitous: we hear it at the beach, during our rosé, even while we sleep. When we awake Thursday morning we know there’s no choice but to make the ninety-minute drive to the nearest large hospital, in Cannes. I am resentful on the drive, unable to talk with Darryl who eventually opens a book, leaving me alone to drive and tussle with my anger. This was our time away from illness, away from worry, away from the medical establishment. But somehow it has followed us here.

  Once at the Emergency Department I begin explaining our situation to the triage nurse. She has either just been sucking on a lemon during her break or is not enjoying the experience of my French. I persevere. Then, just as she appears ready to call hospital security, I muck-up while trying to explain Oliver’s problem.

  ‘Ses poumons soufflent quand il siffle.’ He makes a breathing noise when he whistles.

  She tilts her head sternly; oh yes, the French are masters at disapproval. However, life turns in my favour as she begins to giggle gently under her breath. This is followed by a louder, more relaxed laugh.

  ‘Non, ses poumons sifflent quand il souffle, ou plutôt quand il respire devrions-nous dire!’ she corrects softly, placing emphasis on my misplaced words. Yeah, okay, so he makes a wheezing noise when he breathes.

  We are in, past the front desk. It’s the normal routine after that. Sit in the waiting room. Move to the exam room. Wait there. Finally, same questions, concerned looks and plenty of scribbling when we mention mucovisidose. Then a chest X-ray. Oliver is not breathing properly. The visibility in the X-ray room is noticeably clouded when we enter, but it’s not immediately clear why. Only when the radiographer comes out of his booth to position Oliver on the table do we understand. Our son has a chronic lung condition and an acute chest infection, is coughing and struggling to breathe properly while this man has a lit cigarette dangling from his lips.

  Darryl and I pass puzzled looks between us. Is this allowed here? Maybe it’s unfair to expect a hard-working radiographer to smoke only on his breaks and only outside the hospital. Is it our expectations or their practice which is out of whack?

  We get our instructions and three prescriptions from the professional, non-smoking doctor and leave the hospital without stopping to make any final grammatical errors with the triage nurse. The diagnosis is that he has a chest infection which needs more antibiotics, steroids, physio and time to mend.

  Over the next few days Oliver improves, but only a little. We try to return to holiday mode. Darryl easily slips back into floating in the sea, designing sophisticated sand creations, reading and napping like he hasn’t a concern in the world. I don’t know where he stashes them but the worries seem to magically disappear for him. I clearly don’t have enough places to stuff mine and I certainly can’t disconnect the cable linking Oliver’s cough to my emotional state. Lounging peacefully on the beach when his lungs may be deteriorating is physically impossible for me. I spend any child-free moments admiring the flat crystal sea, wondering why a God who could make such a spectacular scene can’t manage to keep my little boy’s body working properly. My praying may be heretical—if that’s possible—but it’s the best I can do.

  10

  HOSPITAL TOURING

  ‘I am sorry, Madame, but you will not be able to stay with your baby. We have only two rooms on the ward which can accommodate a mother and they are both occupied.’

  This is not surprising given the rules and fuss they made about me staying in this Parisian hospital six months earlier upon returning from Normandy. Just days after our return from the South of France, we’re back. However, the astonishing part of what the nurse has said is that this is a sparkling new thirty-two-bed ward, designed specifically for babies under eighteen months of age. Are there really only two parents who want to stay with their child? In many ways Oliver, at ten months, is now at an even more difficult age to be left alone than he was at Christmas. Then he was only a tiny baby, slept a lot and wasn’t nearly as aware—or afraid—of his surroundings. I’m determined to stay, so I try another tack.

  ‘But I can’t leave him. He’s still breastfeeding.’

  As I expected, the nurse is stunned by this. Babies are rarely breastfed past two months in France. She hesitates then gets a second wind in her effort to dislodge me.

  ‘He is perfectly old enough for the bottle now. That will not be a problem.’ Reaching to take Oliver from my stiffening arms she adds, ‘Ne vous inquiétez pas, Madame.’

  Don’t worry? When I am asked to deposit my child at the hospital—as if dropping a shirt at the dry cleaners—my child who is still breastfeeding, understands no French and is very unwell, knowing he may stay for days and possibly weeks. I will worry. And dig in my heels. Besides, I’m sure there must be something lost in translation here. Hasn’t someone thought to leave space in this new ward for parents? Maybe she mistakenly thinks I’m expecting the Hilton.

  ‘Oh, I don’t have to have my own bed. I’ll be happy with a mattress on the floor next to Oliver’s cot. That will be just fine.’

  This answer is accompanied by a distinct crispness, a finality in her tone.

  ‘Non, Madame, ce n’est pas possible, ça n’existe pas ici.’

  She is not giving in easily so I need to change course again. If mattresses do not exist here, chairs must.

  ‘Okay, then I will sleep in the chair in Oliver’s room.’

  At this hospital there are probably rules against such unseemly behaviour, but I’m fairly confident that even in France I can’t be forced to leave my son. The nurses, kind and decent people, who probably wouldn’t enjoy being separated from their own sick child, scuttle up and down the corridor, flapping their hands and shaking their heads at L’Américaine rule-breaker in room number two.

  After several nights of little sleep in the chair, Darryl suggests I try coming home after Oliver is asleep and getting back before he wakes in the morning. So, for the next few nights I drive home at nine o’clock and am back before he awakes at six in the morning. The nurses shake their head disapprovingly, wondering why I am rushing in so early. However, on the third morning of this new approach something goes wrong. I hear about it the moment the elevator doors open.

  ‘Oh, Madame,’ says the nurse at the front desk, ‘your son awoke at 5:30 and has been screaming uncontrollably for you ever since then.’

&nb
sp; When I arrive at Oliver’s room there are two nurses gently trying to calm him but he’s not responding. His face is red and his eyes swollen and puffy, like he’s having an allergic reaction to the hospital. A few hours later the head nurse reports that, remarkably, one of the exclusive ‘mother and baby’ rooms has opened up and we are shifted down the corridor before lunch.

  We pass a rather uneventful week on the ward as the team try to identify and treat Oliver’s persistent cough. This time we are prepared for the complex rules, perfunctory bedside manners and strict routines packaged with the generally very good medical treatment. His cough improves slightly and, without any real resolution, we are discharged. We are also given the all-clear to take Oliver back to the US several weeks later for a planned vacation—his first introduction to my family.

  ***

  Two weeks after Oliver’s hospital stay we board the plane to San Francisco. Darryl is coming too, but due to an unexpected last-minute work commitment, he will follow a few days after us. Travelling solo may be so luh-vell-ee and relaxing for him but not the best news for me.

  With Aidan at three-and-a-half and Oliver ten months old, there’s huge potential for travelling disaster. By now I’m a reasonably experienced and relaxed traveller, but I’d still rather stay home and clean my cutlery drawer than board a ten hour flight with these two. Though my spiritual life has shifted from a black and white to a murky grey, I still hold a fairly unrealistic view that my minute worries constitute grounds for a divine intervention. So I decide to pray for a guardian angel—maybe a friendly grandmother?—to sit next to us. I have travelled enough to know that they exist, these pleasant, helpful, easy-going people who don’t mind young children.

  Please, oh please, could I have one just this once?

  Wanting to limit our on-board time, I make sure we are the last people on the plane. Our seats are two rows from the rear of the aircraft. Oliver doesn’t actually have a seat apart from my lap. As I approach our row I can see that the third passenger seated in our bank of three seats turns out to be an immaculately groomed, mid-forties male (later I will learn that he’s also single and childless).