The Upside of Down (21 page)

‘Um, do we need to think about how this is going to work?' Darryl asks tentatively, ‘Because he isn't currently very comfortable with needles.' We're both worried that this stellar appointment is about to crash and burn in a dramatic way.

‘That's a shame that he's afraid,' answers Alison ‘If you were here longer we could organise an appointment with our play therapist. We often use her in situations like this.'

‘A play therapist?' he stutters. ‘You have one on staff at the hospital?'

‘Of course. She's an integral part of the team.'

Before we catch our breath from that shock Jan walks back into the room carrying—of all things—a bottle of bubble mixture. ‘Okay, Darryl your job is to blow bubbles over Aidan's head. Do you think you can manage that?'

Excuse me? Darryl and I stare at each other. He nods obediently and begins blowing. Within moments Aidan is mesmerised by the fascinating cloud above his head and hardly lets out a squeak as the needle slips smoothly under the skin and into the vein.

This is the ‘how' of healthcare delivery and we're starting to grasp just how much it matters.

***

Back in Paris, one healthy month rolls into another and then one healthy year runs into the next. It's amazing the difference this makes to our lives, giving us the ability to unwind into a somewhat ‘normal' existence. Even Aidan and Oliver now have the chance to develop a more ordinary sibling relationship, complete with the typical blaming game. One night three-year-old Oliver is acting up by sneaking out of bed repeatedly. Standing outside the kids' bedroom door I can hear him breathing and rustling about on the other side.

‘Who's behind the door?'

A tiny, tentative voice answers, ‘Me.'

‘Okay but “me” had better climb back in bed now before he gets in trouble.' A minute later I can still hear him, feet shuffling, pyjamas brushing against the door, an occasional small chuckle. I repeat, ‘Who's behind the door now?'

‘Me.' Then he gets a better idea. ‘No, it's not me, it's Aidan!'

As I open the door I see Oliver hustling back to bed as fast as a little pair of legs in nappies can go. Now Aidan's climbing down the ladder from his bunk.

Indignantly he says, ‘I'm not Aidan!'

‘Yes, you are, you're Aidan,' I correct him, completely baffled at this point.

‘No, I mean, I'm Aidan. I'm not “Me!”'

This period is also marked by a milestone in our lives as Oliver begins school.

Aidan, who's now heading towards six, has been at our neighbourhood school for two years. His first year was a little wobbly. His teacher, though warm and thoughtful, spoke no English at all. Aidan's best friend, Armelle, translated regularly for him, but for a naturally gregarious child this second-hand communication was frustrating. In his second year of school a different teacher pulled out a guitar the first day, communicating through song, and Aidan turned a corner. In fact, the teacher described music as the
crochet
, hook, to draw him into the language. So as we turn up for Aidan's third year of school he's bilingual and confident.

Oliver, on the other hand, is such a gentle and shy little boy that I wonder how he'll ever manage. The school days are long (9am – 4:30pm) and intense.

French school has been a big adjustment for me—and I'm not even attending. Anglo-Saxon parents expecting a buzzing school community life won't find it here with the vast majority of parents returning to work shortly after birth. There's no hanging around to chit-chat or go for a coffee after morning drop-off. Many parents, however, do take the time to check the school cafeteria's four-course lunch menu posted by the front door.

In the end, Oliver's first day is painful. When I'm sixty I'll probably be sitting on a therapist's couch saying ‘I never should have left him at school that day in Paris …' The teacher and assistant peel him off me one limb at a time, the way my sisters and I used to lift our sunburned skin off our shoulders after long days at the beach, objects not intended to separate. ‘He only cried for the first hour,' the teacher reports later, ‘then he was fine.'

Despite the rough start he quickly slips into a fairly satisfied routine at school. Within weeks his teacher tells me that he can follow instructions in French without fail and, probably because he senses his mother's deep guilt, he repeatedly greets me after school saying, ‘Don't worry, Mum, I had fun.'

Throughout the year a small but committed group of three-year-old girls profess their love for Oliver, though he remains aloof: ‘Mum, I can't marry those girls because they are French.'

It's funny but I know what he means. As we finish up our fifth year in Paris, I don't want to be married to France anymore. Darryl loves his job at the OECD and, though frustrated by the urban limitations of Paris, is in no rush to move. Aidan is becoming French. He and Armelle, who is also bilingual, regularly swap languages in their play without realising it. He is happy. Oliver has never known a life outside of France and isn't particularly complaining. Even our parents seem to have accepted Paris as a long-term destination for us and rarely ask about a possible move.

But I can't stay.

It's true that I am still infatuated with our view over the Seine and the way the
Bois de Boulogne
rolls on hectare after stunning hectare with its dramatic seasonal changes. The city itself is as seductive as ever. Plus, I know that if we leave I will miss our steady friends, like Marie-France and Jean-Pierre, who have juggled their lives—and opened their hearts—to keep us afloat.

Yet as an OECD spouse still ineligible for a work visa, I can see that unemployment is not emotionally and mentally viable for me in the long term. And though we have reached a truce in our conflict with the French medical system, it won't last forever: our disagreements about care are too fundamental to disappear completely. Hospitals are a lifelong affair for us, so we must be philosophically in tune with our doctors. The inpatient experiences we have had with Oliver have simply been too jarring to repeat. And we wonder about the future psychological impact on the kids and their relationship with their own healthcare. Could fear of the hospital impede their own efforts to take care of themselves?

Finally, despite Paris being one of the world's most enticing cities, the urban life still grates on both Darryl and me. We long for the open spaces we knew when we were young, for New Zealand's barren beaches and the softly rounded brown hills of Marin County, California. We hunger for these places not only for ourselves but for our children.

In the end, we begin looking for another country. Initially I insist on the US or New Zealand, asking Darryl jokingly, ‘Your country or mine?' But fairly quickly we can see problems with those options. The most appropriate jobs for Darryl in the States will be in Washington, DC. It's a city that I loved living in briefly as a single person but am not keen to contemplate with a young family, especially when it's 4000 kilometres from my parents. Also, we both have serious concerns about subjecting Aidan and Oliver to the whims and risks of the American healthcare system. Americans sometimes ask us why we don't move to the US since, according to them, the hospitals there are the ‘best in the world'. Yet we're incredulous when we hear repeated stories of medical bankruptcies, ongoing and often cruel clashes with insurers over bills and regular haggling over approvals for medications. Can care be the ‘best in the world' if people can't reliably access it? Is it worth living in constant fear of losing our insurance? What will happen if one day the kids can't work and have no coverage? We decide that these aren't risks we're willing to take.

With jobs in New Zealand not quite right, with nothing available near family in Auckland, our eyes turn to Melbourne where Darryl has had a strong work lead for several years. We have repeatedly heard the city described as a great place to live, it's not too far from Auckland and we know that the CF care is excellent, so it has long been tucked away as a possible idea for the future. When Darryl knocks on the door, the job quickly becomes a reality and Melbourne a serious option.

About this time, amidst dreams of our own garden and no downstairs neighbours to irritate with bouncing balls and stomping feet, we begin thinking about the possibility of another child. The thinking period is a teeny bit fleeting and before Darryl can even produce a twinkle in his eye we discover that I'm pregnant. A week or so later I make an appointment to see my GP in Paris for another matter. But, not surprisingly, the topic of the pregnancy comes up during the visit.

‘What? You're pregnant?' he queries, aghast, as though I have just confessed to eating my children for breakfast. ‘Why?'

‘What do you mean “Why”? Obviously it's because we want another child.' Does he think this is a ruse to claim the government's baby bonus? He knows my medical history. But he has never before mentioned anything about our earlier pregnancy. Until now.

‘So, are you just going to keep on getting pregnant and terminating babies if they have CF?'

I wonder if this tact and subtlety was taught in medical school or whether it's a skill he has cultivated all on his own.

‘Um, if you'll recall, my last pregnancy was my son Oliver, who was born despite our knowledge of his health condition.'

‘Yes, but I know you terminated the pregnancy before that.' His words are laced with a ‘gotcha' tone, as though he's revealing previously undisclosed evidence at a trial. Maybe he has forgotten that I was the one who told him this in the first place.

His judgment is painful and rekindles the vulnerable feeling I experienced during the other two pregnancies. I hunker down, emotionally pulling the curtains on an unsympathetic world, determined that Darryl and I will make our own decision once again in what currently feels like a crapshoot of a world.

A few weeks later on a pre-planned trip to New Zealand, we leave the kids with Raewyn and fit in a three-day visit to Melbourne. The city seems to have all that Paris lacks for us right now. Darryl has been offered a job at the Australian Competition and Consumer Commission (ACCC) working on a variety of issues of regulation, similar to his work in Paris—minus about twenty-nine countries. It may not be so international but it will be interesting. We visit the children's hospital, talking with respiratory staff; we even have dinner with some other CF parents, giving us great insight into the care in Melbourne. It all seems right and so we decide to make the move.

We arrive back in Paris just in time for the pre-natal testing with this baby. It's the same fear all over again but this time after the five-day interminable wait the doctor greets us with: ‘
J'ai de très bonnes nouvelles pour vous
.' I have very good news for you.

This, our third child, does not have CF.

***

‘I have decided that I'm not going to Australia with you,' I tell Darryl casually one night after putting the kids to bed, several months after our return from Melbourne.

He's about to sit down for a session of piano playing, but this at least catches his attention. ‘Really?' I nod my head. ‘What are you talking about, Sue?'

‘I don't want to have a baby without any family or friends. It's too hard.'

‘Hmmm.'

I plough on. ‘It's a brand new country where I don't know anyone. We'll be living in an unfurnished house for two months and you'll probably be stressed and unavailable because of a new job. I can't do it again.'

‘Okay. So, what are you thinking?'

‘I could stay with your mum and Kevin in Auckland while you get settled in Melbourne. Aidan and Oliver would love it. We have so many air miles that you could go back and forth on the weekends.'

‘Yeah, that might work, but what about the birth? What if I can't get back to Auckland in time?'

‘I don't know exactly. But maybe you could work in Auckland a few days near the due date or something. It's a risk, but at this point I'm willing to take it.' Within days of this conversation tickets have been changed, Darryl's mum consulted (she's thrilled), and Operation Move is re-launched.

It's 2002, Aidan and Oliver are now age six and nearly four, old enough to sense the excitement in the air but not so old as to worry about the changes ahead. Aidan is very tall for his age—with two 6'2” parents there was never really much question that height would be a family trait. He also has bleach-blond hair and an infectious grin. He has developed a flamboyant personality, including occasional cross-dressing, and is quite Aidan-centric. With more close friends than I have shoes, including several girls who have expressed a desire to follow him anywhere, he's rapidly becoming the socialite that his parents never were. For him the going-away parties, gifts and attention are worth the slight inconvenience of moving around the world.

Oliver is also very blond and tall, but he's quiet and gentle, focused on books, hot chocolates and his family. He can sit for forty-five minutes carefully turning the pages of
Hairy Maclary
, something Aidan would struggle to do if we tied his hands to the book. One of Oliver's current focuses is his dad. Even though it's me who repeatedly makes his special lunch of tomato soup and macaroni and creates the most elaborate train tracks involving bridges, switches and raisins for dumping, his heart is elsewhere.

One day from the backseat of the car he reports matterof-factly, ‘I love daddy a lot and mummy a little.'

‘That's not so nice, Oliver.'

‘It's nice for daddy!'

Our last week in France is one of the longest of my life. I'm bulbously pregnant—a vast mound balanced on a pair of long, scrawny legs—and emotional. I spend the week climbing over boxes of all sizes in a heatwave with temperatures in the high 30s. We manage to choose the least competent moving company in all of Europe. Somehow the kids entertain themselves for hours amongst the masses of cardboard and bubble wrap which surround us day after slow, horribly hot day. Eventually, after many sad farewells, the four (and three-quarters) of us are on the plane out of France to re-start our life all over again. We're beginning to resemble some kind of reincarnator's dream.