The Upside of Down (14 page)

‘What's happening now, Darryl?'

‘I can't see anything; the curtain's blocking my view.'

‘Then stand up and have a look.'

He stands so briefly it's as if his legs have buckled when bearing weight. ‘They're cutting.'

Five minutes later. ‘What now?'

He takes another lightning quick peek.

‘They're still cutting.'

He's beginning to sweat in this ice-cold theatre, either because of my personal ducted heating system or, more likely, the length and immediacy of the cutting process. Later he describes it as watching a butcher snip through layer upon layer of taut chicken skin. I don't mind the poultry comparison so much as the fact that it takes nearly twenty minutes to saw through so many layers of … uh, stuff.

Unfortunately, this is when things get a bit mucky. My calm and cool obstetrician begins to raise his voice uncomfortably at the midwife and gorgeous anaesthetist. Initially Darryl and I can't figure out exactly what he's saying, as it's quick and technical French. My first thought is that there's some unanticipated medical issue—maybe meconium ileus after all? But after several minutes of anxiety we understand the problem: they have misplaced the baby.

Now I'm sure I am medically naïve, and I suppose it's possible that my particularly tall frame provides more hiding places than the average petite French woman, but I really don't think keeping tabs on a baby should be that hard.

Thirty seconds later the doctor seems to be yelling at me when he says ‘Push, push hard!' I throw a confused look at Darryl: the mother is not meant to push in a Caesarean. Before I can respond, the midwife and anaesthetist step past Darryl, moving him aside as they jostle for space around the table. They place firm hands on my stomach and literally push the lump of baby south towards the groping hands of my doctor. Maybe we should just open the doors, holler down the hall and invite the receptionist and cleaner to help.

This rather slapstick approach fails. Eventually a vertical incision is added to my substantial horizontal one. Several moments after the second incision is made, the doctor smiles weakly, relieved, as he holds up a large, slippery baby for all to see. He is beautiful and he is here.

This is how our second son, Oliver—with his thick dark curls and long, curving fingers—enters our lives.

8

JEAN-PIERRE

Jean-Pierre was a man I never wanted to meet. But we had to meet him. And we had to have him in our house every day. Yes, every single day and often twice a day. There was no choice.

One of the real surprises when we had first arrived in France was discovering that all CF patients have their own personal physiotherapist who makes daily house calls. The French believe this is best practice because it helps overworked families and gives patients the best physiotherapy possible. It also allows the hospital to confirm we're doing all the treatments that we're meant to be doing. When I first heard about our in-house physio I feared this man would be more a spy for the French medics than a friend and ally to us.

It was eight o'clock in the morning six weeks after our arrival in Paris when the front door buzzer sounded through the intercom. I picked up the phone, ‘
Oui?
'

In quick French I heard, ‘Hello, it's Jean-Pierre, your new physiotherapist.'

Aidan was standing by the door with me. I flashed him a weak smile. ‘It will be fine, Aidan. Don't worry.' Inhaling deeply, like a last breath of freedom, I pressed the buzzer to open the downstairs door and allow this stranger into our lives.

During our first hospital visit the week before, the physiotherapist—Scary Man—was gruff and business-like, serious about his task, no time to ease the fears of a young toddler who didn't speak his language or understand his actions. After that deeply upsetting incident, Jean-Pierre would need to earn our trust.

From the first glance he was not what I expected. Standing at the door of our flat, Aidan and I watched as a man in his early thirties stepped from the lift with a wide grin on his face, extending his hand for a friendly shake. He was very tall with huge, broad shoulders—about the build of a New Zealand All Black—and almost no hair. He was sweating and looked as though he had been rushing.

Once seated, I placed my language limitations on the table.

‘I'm sorry but my French isn't very good.'

‘That's okay, my English isn't good either. But I can understand it. If you speak slowly to me in English, I'll speak slowly to you in French.'

We chatted casually about moving to France and Aidan's overall condition. Jean-Pierre was patient and relaxed as though he had nowhere else he needed to be that day. I told him about our experience with Scary Man. His response was reassuring.

‘That doesn't surprise me because the chief physiotherapist is very intense. And he's committed to making certain every patient is receiving the right kind of physio from the right person every day.'

‘Fair enough. But it would have been so much easier if he had just taken a bit of time to calm Aidan or talk to me,' I said.

‘Yes, he sort of operates in his own world. I have heard that he regularly wanders through the neonatal ward kissing the babies on the forehead.'

‘That's odd. Why?'

‘Because there's no test at birth here for CF. He believes he can identify those babies because their skin is so much saltier,' Jean-Pierre explained.

‘So he's single-handedly performing the national screening test?'

Jean-Pierre nodded. Turning towards Aidan, ‘Pleeze come ere to zee sofa, Aye-don' he asked in English and in a voice far too gentle for a man his size, like Arnold Schwarzenegger whispering sweet nothings.

Busy playing with his Brio trains, Aidan looked to me for guidance.

‘It's okay, honey, I'm right here. It'll be fine.' I gave Jean-Pierre a fierce it-had-better-be-fine-Mister kind of look. Aidan climbed up on the couch. Jean-Pierre rolled up the sleeves of his jumper before placing two enormous hands on my son's small chest and pushing down firmly just like the hospital physio. Aidan began to cry and squirm immediately. This was not a good start.

Knowing the importance of first impressions, Jean-Pierre wisely decided to do only a short session (ironically called a
séance
in French). The length would increase over time until it reached fifteen to twenty minutes each session. We agreed that Jean-Pierre would come every morning initially, but we would add evening sessions if Aidan developed a cough. As it was the start of winter I knew we would be seeing this man a lot, probably too much, in the months ahead.

From our second-floor window I watched as he ran across the parking lot to his car, looking like he was late for his next appointment, oversized black bag draped across one shoulder. Although he was clearly going to be an imposition in our lives, I liked him.

***

Now, almost a year later, we're bringing Oliver home from the hospital. The next day it's time to begin his physio. Jean-Pierre holds him tenderly for a cuddle before laying him down on the nappy changing table in the kids' bedroom to begin the now familiar CPR-like manoeuvre we have learned with Aidan. But by this time Aidan's a strapping three-year-old while Oliver is only about the size of a scrawny melon. The massive All Black hands swallow my son. I can feel my blood pressure rise.

‘
Vas-t'en
,' go away, Jean-Pierre says, waving me off into the kitchen. It has to be done and we both know it. His wave-off is an admission of the difficulty, an acknowledgement of the pain and frustration of handing over my newborn son.

By now Aidan has warmed to Jean-Pierre. A month or so after we arrived in Paris, Jean-Pierre had brought a bright green rubber ball as tall as Aidan, encouraging him to jump on it and run and play as much as possible. The activity is great for his lungs, though doesn't do much for improving international relations with our downstairs neighbours. Normally Aidan cooperates with physio so he can quickly return to playing. But some days he unexpectedly screams and struggles from start to finish. I pace the kitchen, kicking our cupboards and muttering about this nasty illness. Jean-Pierre, though kind, never backs down. They always finish the
séance
.

‘He must do it,' he reminds me on his way out the door one day, ‘
Même s'il est têtu
.' Even if he's stubborn.

At the door, Aidan attaches himself to my leg, red-faced and angry, staring suspiciously at both Jean-Pierre and me. I dread those fighting days when I am left emotionally depleted, wondering how to be the protector of my son's physical health without destroying his mental health.

One morning, while on middle-of-the-night feeds with Oliver, I oversleep and am still in my pyjamas when I answer the door to Jean-Pierre.

‘Sorry, I just woke up. Come on in, I'll get Aidan.' Popping my head in the door of his room, I find him sitting on the floor with a pen and paper. ‘Come out, it's time for physio.'

I return to the living room. Several minutes later Aidan still hasn't arrived. I am anxious to slip out and get dressed and I know Jean-Pierre's always tight on time in the morning. I head back towards his room.

‘Aidan, what are you doing? We're waiting for you.'

Finally he emerges from his room, blond hair a scruffy mess, wearing his blue pyjamas with the white clouds and a defiant look.

‘Jean-Pierre, I made a sign for you,' he says, pointing to his chest, where he has stuck a yellow post-it note with some illegible scrawling on it. He can't write words yet. He strides across the room, repeatedly jabbing his finger against the note and declaring ‘The sign says ‘No physio!''

Often the day after a particularly bad battle Jean-Pierre arrives with a peace offering, sometimes a book or sweets, once a cool electronic game. When he returns from exotic holidays, a penchant of his, there is often a token for Aidan (and, later, Oliver) such as the carved, wooden elephant from Tanzania.

Despite disliking physio, we are all learning to trust the giant Frenchman.

Darryl is usually walking out the door for work just as Jean-Pierre arrives. At times this really frustrates me, especially on the challenging days. One morning Aidan's tossing a tantrum during physio, Darryl's running late and I'm in the kitchen beating up on the cupboards again.

‘Sorry, but I need to go, Sue,' Darryl warns, coming over for a kiss.

‘This is so frustrating. I hate the whole thing. And I hate that you're not part of physio anymore.' In New Zealand we shared the responsibility for it: I often did the morning and he did the evening. Now it feels like this other man is more involved in our kids' care than my own husband.

‘Why does it matter if I'm involved with physio? Jean-Pierre does it better than me anyway.'

‘I don't know why it bothers me … But it just does.' Vague explanations do nothing to improve my standing with Darryl. To him, if there's no rational reasoning for emotions, they're not valid—a principle we vehemently, and regularly, disagree about. ‘It makes me feel more alone emotionally, like I'm carrying the whole burden without you.'

‘Just because I'm not doing physio anymore?'

I nod.

‘But that's only one part of the whole picture and Jean-Pierre is doing it for us.' Darryl is trying to reason with my emotions.

‘It's just not the same. I still have to deal with the whole psychological side of physio and the battles over it—alone.'

It's becoming clearer that I need help dealing with the emotional weight of this on-again-off-again dance with mortality, this sense that things could go steeply downhill any moment. Jean-Pierre, though caring and involved, cannot be expected to provide that support. He's a professional who has had to learn how to sidestep the deeper long-term issues.

Both Darryl and I have also begun to realise that while Jean-Pierre's presence helps by relieving us of the day-to-day responsibility for physio, it's also disempowering. Even when we leave Paris for a holiday the hospital encourages us to ‘book a physio' in the town where we'll be staying, rather than doing it ourselves. We ignore the advice and forge on alone. If we can't be independent with Aidan and Oliver's physio, do we have any power over this illness? We are realising the importance of maintaining some control over our lives and the kids' health. Delegating all responsibility to the doctors, nurses and physios means we lose motivation—and hope. The only slightly redeeming quality of CF is that there's the potential to improve our sons' lives through conscientious care and hard work. We can't risk losing that motivation.

As we continue to read and learn, we find fascinating studies linking ‘non-genetic factors' to quality of life and life expectancy. Some of these are fairly obvious: exposure to cigarette smoke in the home decreases lung function while regular cardiovascular exercise improves it. And the most common reasons patients and families don't adhere to treatment regimens are because they don't understand them or their importance. Adherence is probably even worse in situations like ours where patients and health professionals don't share the same first language.

But some research findings surprise us. For example, young patients who have difficulty keeping on enough weight are significantly more likely to have a mother who is a successful ‘dieter'. We also read a study showing that 22% of the variance in height and weight changes in children with CF is due to family stress, family resources and family functioning. The way our family unit copes with life's challenges may have a significant impact on our children's wellbeing. It sure makes you think twice about bickering over responsibility for the dirty dishes.

At one point we begin to worry about the impact of Paris' air pollution on the kids' precious lungs. We're anxious that studies may show people with CF living in large cities have worse outcomes because of prolonged exposure to air pollution. But it turns out that their life expectancy is generally longer than that of people living in rural areas. Why? Because of the proximity to excellent specialised centres. The quality of on-going clinical care received by patients is currently the key to fighting this disease. We ditch our worries about pollution and instead focus on our family relationships and the quality of our medical care.