The Upside of Down (16 page)

Life in a French hospital is a cross-cultural experience. Because Oliver is so young and we are adamant that one of us will stay with him, we're given a room with a cot and a ‘mother' bed. Only months later will we realise the favour extended to us. Parents are definitely not encouraged to stay here. The head nurse hands me a sheet of rules, peering over my shoulder and expanding on each as I read through them.

Mothers will be up, dressed and have the bed made by eight o'clock each morning. No meals will be served to mothers. Mothers may make themselves a coffee in the kitchen but nursing staff will not make coffees. Mothers must bring their own towels and do their own laundry. Mothers may only have visitors between 3-8pm
.

I speak with Aidan on the phone several times a day. The conversations begin identically each time. ‘How's Oliver doing, mum?' Then before I can reply he adds, ‘I'm doing not too bad.' At home Darryl, Aidan and Talitha organise a new routine, one without Oliver and me. Talitha is generous and creative, taking Aidan to the park, baking and helping to build sophisticated train lines on the living room floor. Jean-Pierre continues to do Aidan's physio and offers any help he can. Darryl comes to the hospital during his lunch-hour and after work.

The efficiency and hygiene at the hospital are astonishing. Nurses are highly skilled and meticulous, though not at all chummy. The physios barely acknowledge me yet perform very effective physiotherapy. Our doctor, the Professor, arrives only once in the week with a fifteen-strong flock of subordinates. He briefs them on the case, nods at me and is gone. My juvenile French is still too sluggish to get in any questions, especially with a full football team of junior doctors listening, before he disappears. Other white coats pass through fleetingly, again with little conversation.

Although too intimidated to speak up, the lack of discussion and involvement in decisions leaves both Darryl and me questioning the care. We may have relatively little medical knowledge but more ‘Oliver knowledge' than anyone else. Is that not relevant? Isn't there a role for us to play in helping him improve? I am physically present with Oliver, but otherwise feel invisible. The role allocated to parents is minuscule with ‘someone else' deciding everything about his treatments, meals, baths and even visitors. I am routinely put out of the room for dressing changes and procedures, despite Oliver's wild protests. For the first time since we started on this journey with illness I begin to feel like a victim, a powerless player caught up in a life that is moving in ways I can't control. This is intensely frightening. Yet right now there's nothing to be done but get through the crisis.

Within a week he's well again and we're released.

***

After eighteen months in Paris my French has improved markedly, helping my confidence in every area of life. However, I'm still occasionally snowballed by the cultural differences. There seems to be a clear code to living in France which regulates many aspects of French life but can only be decoded painstakingly slowly by those not raised in it. It's like playing chess with new rules except the changes aren't explained to outsiders. Maybe the pawns are all-powerful and the queen is toothless. In France some qualities, like beauty and restraint, have an exalted status while others, such as warmth and friendliness, are at the bottom of the heap. There seem to be rules which are routinely broken while others are sacred—and outsiders drown while trying to distinguish between them.

I'm surprised to discover that some monotony has already developed in a city so extraordinary that I probably believed life here would never feel ordinary. Yet life anywhere is made of routine. And with half of our family unit unable to cook meals, make beds, do laundry or entertain themselves safely for more than about forty-five seconds, much of our time revolves around the everyday drudgery of domestic affairs. And much of the responsibility for that drudgery is mine.

This should have come as no surprise to me since before we even left New Zealand I knew that the French government would not grant me a work visa. Oddly, the whole stay-athome mum thing seemed like such a minor detail when we were deciding to move to France, like whether to take the family guinea pig or leave it with the cousins. Serious work was something I thought I could easily delay for a few more years, particularly since I wanted time to learn French, to rethink my career (or, more accurately, find one) and to be available for our kids. The overwhelming majority of French women place their babies in childcare and return to work two months after the birth. But Darryl and I knew that exposing the boys to a roomful of germs at a young age wouldn't be the best plan for them.

We are only a year and a half into this great plan for the children and I can already see that I have underestimated the personal and emotional challenge of being available full-time and of parenting first one and now two small children in these one hundred square metres of apartment. Some women thrive on this.

I'm clearly not one of them.

I love these two little boys: Aidan, with his alternating innocence and mischievousness, curiosity and creativity; Oliver's sweet contentedness and warmth; the innate connection I feel to both of them. This mothering life has an intensity I have never before experienced. But I'm periodically tempted to rip my eyeballs out with the tedium. The second hour of pushing them on the swing at the park is the worst.

Conversations with Aidan, though entertaining, challenge my patience.

‘What's this, Mum?'

‘It's an apple.'

‘
Why
is it an apple?'

‘It just is, Aidan … that's what it is. It's an apple.'

After a moment, ‘Why isn't it a pear?'

And then there's poor Oliver. At just six months old Aidan views him as the perfect playmate: unable to disagree or leave the game if he's unhappy. One day I step out of the shower to discover that Aidan has tied a rope to the back of his little wooden scooter—which, inexplicably, he has named Celeste—while attaching the other end to Oliver's car seat. Oliver appears to be a happy passenger as Aidan tows him around the apartment, accompanied by enthusiastic NASCAR sounds.

Darryl's daily routine is vastly different to mine. After sharing the early morning nappy-changing and hot chocolates, he rides his bike fifteen minutes across the Bois de Boulogne to the offices of the OECD, located in the highbrow sixteenth arrondissement. His work focuses on how best to promote competition and control the prices in industries known as ‘public utilities' such as telecommunications, electricity, water, post, rail and ports. He's considered a low-level diplomat complete with tax-free salary and diplomatic number plates. Darryl's pretty relaxed about all of that. I guess it's difficult to get a big head with baby vomit on your tie.

Some days at lunchtime he meets us in a nearby park for peanut butter sandwiches while other days he dines with civil servants from a dozen other countries, feasting on lamb, ultra-creamy potato puree, dainty carrots accompanied by an oaky Cabernet.

‘Of course I like having lunch with you guys,' he reassures me, climbing out of the sandpit and dusting crumbs and sand off his suit. Somewhat surprisingly, I believe him. First, he has never been able to lie—ever. Even a tiny, false make-my-wifefeel-better compliment is completely beyond his ability. And second, he has never enjoyed schmoozing with the big shots.

And I must admit that our routine, even our dry domestic life, does have unique elements which didn't exist in New Zealand. There's that distant view of the Eiffel Tower from our kitchen window, the morning stroll with the kids up the hill to the
boulangerie
for a baguette and three
pains aux raisins,
and our constant collisions with the French language. Just when I am beginning to think ‘Okay, I can speak French now', I inevitably ask the nice man at the dry cleaners if he can get the stain out of my husband's necklace (
collier
). He stares at me with a concerned look, like he's steadying himself in case I take off my clothes and begin doing the Cha Cha in the middle of his shop. Then I know, once again, that we're miles from the familiar.

***

‘Tonight is my least favourite night of the year,' the young mother confides in me.

‘Oh, really? Why's that?' I ask, not sure I need to know all of the details from this overly chatty new American acquaintance.

We're at the birthday party of a little four-year-old Kiwi girl, a friend of Aidan's. The children are playing Pass the Parcel while the parents, mostly mums, sit around chatting about nothing in particular. Oliver is cuddling happily in my lap, mouthing a toy. I'm not terribly accomplished at this kind of small-talk social event. And this one is about to get much worse.

‘Once a year we have to go to this fundraiser—it's a dinner, and the food is actually pretty good, I must admit. Sometimes it's traditional French cuisine although one year they served an elegant risotto. So anyway, it's to support medical research into—that's enough cake for you, Emma!'

After just five minutes of conversation I'm finding it hard work to listen to this woman's monologue dotted with self-interruptions.

‘Anyway, the night just feels like it goes on forever—really depressing—with photos of sick kids in hospital and sad stories from parents and it's all just so inevitable because they all just get sicker and sicker.'

‘Who?'

‘These kids who have this disease—it's, oh, I don't know what it's called in English because the whole night is in French—which I speak fluently, of course, since my husband is French. Are you married to a Frenchman?'

‘No, he's a New Zealander.' I begin to look around the room, searching for an excuse to divorce myself from this discussion.

‘Anyway, I would never go to this dinner. I just would refuse because it's so depressing, but my husband's niece has it so we really have to go. She's a nice girl, but she's really thin and has to have some kind of physiotherapy every day and she always has a cough—you'd think she had smoked all of her life! I don't think she has, of course …'

Her last few sentences have caught my attention. ‘What did you say the condition is called in French?'

‘
Mucovisious
… or something like that. I can't recall it exactly but it has something to do with mucus, I'm sure.'

‘Could it be
mucovisidose
?'

‘Yes! That's it. You have heard of it, have you? I'm surprised because I don't think it's all that common. Do you know someone who has it?'

I hesitate. Can I let this pass? I'm tempted to lie, but it feels like an act of treason, unfaithfulness to Aidan and Oliver. Finally, I answer.

‘Yes, both of my children were born with
mucovisidose
. It's called cystic fibrosis in English. You have probably heard of that.'

I don't think she hears my translation. Blood is flooding to her face. She flutters a hand in front of her eyes as though to snap herself out of some nightmare. She glances at Oliver and then looks back at me, relief running across her face. ‘Oh no, it isn't the same disease. You see, the kids with this thing are really, really sick. Like, they
die
of it,' she says with emphasis on the dying bit. ‘Your son looks fine.'

‘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.'