The Upside of Down (12 page)

At this point the appointment turns steeply downhill. The Professor spends a few minutes talking about lung disease. My limited French is overwhelmed. Ursula and one of the junior doctors try to translate while the Professor explains what I already know, that CF leads to thickened mucus in the lungs. This is a problem—'
Un gros problème
.' And the way to deal with the problem is to remove the mucus. He repeats the bit about removing it twice, very slowly, with emphasis on every word.

I'm just about following his French because I know the subject matter, though the translation is a bit patchy.

‘From your medicine's letter I see that you make physiotherapy like percussion in New Zealand. That's not what we do it here in France. Too soft, nothing comes out that way. This is important for kid like
Aye-don
. Here we send physiotherapist to you home every day. We demonstrate how we do it now. Please put
Aye-don
on the table of examination.'

As I do this a thin, balding older man emerges from the shadows. He is a dead-ringer for Willy Wonka's scar-faced assistant. Aidan, who hasn't even seen the movie, appears to have an immediate unease about the man and clings to me like stubborn lint.

For the next five minutes Aidan screams, red-faced and panicky, while Scary Man performs what looks like aggressive CPR on him. Every minute or so he sits Aidan up from his horizontal position and presses a finger firmly at the base of his throat until inducing a cough—a spluttering, shortof-oxygen cough. My son looks at me with desperate ‘Why aren't you saving me?' eyes. Tears slip down my cheeks, and Ursula's, as we stand in front of him, frustrated and powerless.

A week later the appointment summary from the Professor arrives in the mail. Although written in French, it's a help to have a record of the appointment on paper. After summing up his clinical findings the Professor adds:

‘
We have discussed the differences between care in New Zealand and France. We have shown the mother how we do physiotherapy here in France. She cried while watching it. But I believe she has understood that this must be done
.'

7

PAIN AND JOY

Our first Christmas in Paris comes and goes in one continuous and heavy drenching of rain. It's just the three of us—with new friends either out of town or with family—so we hunker down to enjoy holiday food, expensive Belgian chocolate, Aidan's new wooden train set and some weepy long distance calls to family several continents away.

On Boxing Day the clouds part and we slip onto the empty motorway in our Renault Megane and past the grey dreariness of Paris, driving south several hours to Burgundy.

It's so cold in Burgundy that I wear three pair of gloves and we guard the twenty-four hour fire in our tiny, stone cottage like it's the Olympic flame. Despite that, we love being in the French countryside. At eleven o'clock on our first morning we discover that the
boulangerie
van stops daily on the little dirt road outside our cottage, selling super-soft baguettes and the largest and most custardy
pains aux raisins
we have ever eaten. We initially put in a request for three pastries but by the end of the week the driver (who may also double as the baker) is asking for our order a day in advance so he can bake enough to keep up. The
charcutier
(meat man) also pops by, tooting his horn twice a week outside the cottage and offering beef so fresh it could just about amble its way into our kitchen.

We cycle for hours along the canal paths—Aidan on the back of one of our bikes—pumping off our extra wine and pastry kilos and marvelling at the raw and unpretentious beauty of the ancient villages. These remote little towns bear no resemblance to the travel-brochure France we imagined; they're hard-working communities, not holiday destinations. The stone buildings huddle together, as if to brace themselves against the biting winter wind. The villagers look as old as the buildings, dressed in gumboots and layers of wool and overalls. A young foreign family on bikes draws bemused looks and warm greetings unknown in Paris.

Darryl relishes the grunty work of chopping and lugging wood into the house, very different from his normal office-bound life. Aidan is nearly two but still not a quick learner in the speech department. While in Burgundy words begin to pour from his mouth in both French and English: ‘Bike, fire,
pain aux raisins, non!
' He loves the space to run and wander, far from the traffic and chaos of Paris. We pile on clothes and attempt to mimic the locals who disregard the freezing temperatures to stroll through outdoor markets, overflowing with produce and local goods even in the depths of winter. The week in Burgundy represents much of what we had hoped to find in France: history, cultural differences, consistently excellent wine and piles of delicious food.

Life back in Paris, January 1998, is just beginning to settle into something of a stable rhythm when we learn that I'm pregnant. This time it's not a complete surprise. Despite the trauma we have been through in Wellington, Darryl and I love being parents and as Aidan grows we find ourselves aching for more sticky hands, first steps and intimate connections. We always hoped for more children. Neither of us wants to let our last pregnancy dictate the future—keeping us from trying to have another child or feeling tied to our previous decision. Besides, we tell ourselves, we have a 75% chance that the baby will be fine. It can't happen three times in a row.

Yet no matter how much optimism we project, we know that if there's a decision to be made it will be emotionally and intellectually complicated. And we may not even agree about it. So, we have regular conversations about the issue, recycling old arguments, round and round we go, though with some slight twists from the year before. One of the changes is that Aidan has now had two very good years with hardly a cold, cough or fever—and certainly no stints in hospital. In fact, he's walking, talking, eating, laughing and disobeying his parents like any other boisterous little boy.

After putting him to bed one night we sit down in the living room—which now has couches, tables, curtains and proper lights after countless weekends of work and our New Zealand shipment arriving. ‘I know where CF might take us,' I begin, ‘but I also know there's so much research going on and things are improving all the time … I feel like there's reason to be hopeful.'

‘Yeah, it's true,' Darryl replies, ‘but without a cure or some kind of medical miracle it might not be an easy ride, for them or us. I'm just wondering whether we can manage that with two.'

A few nights later we follow the same routine—tea on the couch after tucking Aidan in bed—yet we have swapped sides. It's somewhat worrying that we're shifting views on this life-changing decision about as often as we change our socks.

Tonight I'm focusing on realism. ‘I've been thinking that maybe it'll be too hard on everyone to be dealing with illness with two kids. How will we be able to give them a fighting chance?'

But he has swung the other way. ‘Oh, I don't know. Today I was thinking maybe we could manage it: once we're already doing everything for one, how much harder is a second?'

‘Twice as hard, probably,' I respond.

He continues. ‘But at least it might be easier on Aidan and his sibling to share their illness, to go through everything with someone. Neither of them would be so alone with it.'

At eleven weeks we decide to have a CVS again, the same procedure we had with the last pregnancy. It takes place on a Monday with no problems. We'll have the results Friday night.

So, we wait.

Darryl tends to internalise his anxiety, putting his head down at work and focusing heavily on projects and other tasks at home. I never really learned to internalise. But I'm very skilled at externalising. So he ends up tiptoeing around home, hoping to avoid the random wrath circulating in the apartment all week. Any issues with Aidan's health, like his physiotherapy, set me off, fuming and sullen. Will we be faced with this routine and worry all over again? Or will we end up deciding we just can't manage it, even though we would love another child? Neither option seems acceptable right now.

After the ordeal of the last pregnancy we have only told two people that I am pregnant. My closest French friend Marie-France is one of them. We have two connections with her. Her husband works at the OECD, and she is involved in the church that we have recently begun attending. Despite our experience at our church in New Zealand, we didn't ‘drop out' of faith, though there's no doubt that we have taken a beating. We thought carefully before deciding upon a church this time.

Marie-France is kind and exceptionally generous with her time and knowledge of the culture, helping us with translation, etiquette and—perhaps most importantly—opening doors by introducing us to everyone she knows. Married to an Englishman, her English is better than my French so I often slide lazily into English with her.

‘I can't sleep. I'm consumed with worry.'

Her accent still pushes through. ‘Don't worry, Suzan. Idz going to be okay. Look how you and Dar-eel do so fine widz Aye-don anyway.'

‘Oh, yeah, we manage. But will we still be managing in twenty years? We just don't know how things will go in the future.'

‘Idz true. Zough none of us know, do we?'

In anticipation of good news, I pick out the restaurant where we'll celebrate. I rehearse the happy phone conversation I'll have with my parents and Darryl's mum, none of whom yet know of the pregnancy. After all, I tell myself, the odds are heavily in our favour.

After meandering on for an eternity, the week finally ends. Marie-France has offered to babysit Aidan for the evening; her daughter, Armelle, is his best friend. Darryl and I arrive on time for our appointment at six o'clock and the doctor calls us in immediately. She sits down, wasting no time with chit-chat.

‘
Malheureusement
,' she begins. Unfortunately.

This is the only word I hear, stinging tears somehow blurring not just vision, but hearing. One word, yet it's packed with significance for us, our baby, our today and our tomorrows. Darryl holds himself together and, I think, even manages several questions. Later that night in bed he plays back the rest of the conversation for me.

The baby has CF and we have a decision to make. The next few days are a smear of long, conflicted discussions—thankfully not arguments—about the news the CVS has laid before us. We're getting dressed in our bedroom on Tuesday morning when Darryl restarts the conversation.

‘One of the big factors for me is that I keep thinking if I had to choose between having another child with CF and not having any more children, then I'd definitely choose a child with CF.' Though not faced with that decision, it's a powerful argument for us as we recall our few years of infertility and an early miscarriage before Aidan's birth.

I'm moving in the same direction. ‘I agree. I find it really painful to think of choosing not to have any further children.'

A few moments later I continue. ‘I'm still a mixture of emotions about it, you know? Sometimes hopeful, other times swamped by such heaviness.'

‘I know. I hate that we're forced into this position again,' he replies.

That night I'm sitting at the kitchen table after putting Aidan to bed as Darryl finishes the dinner dishes. I pick up the thread of the conversation. ‘I've been thinking today that I feel more prepared, emotionally I guess, to consider another baby with a chronic illness.'

‘Yeah, I know,' Darryl agrees. ‘I don't know why but it does feel different. It feels in some way like … like it's going to be okay.'

That Friday morning I ask Marie-France to call the hospital on our behalf, to explain that we have decided to continue with the pregnancy. Even with her perfect French the conversation is awkward as the doctor is certain she has misunderstood our decision.

Watching Aidan during this time gives me some peace. Knowing how much we have loved and enjoyed him—in spite of his health challenges—reminds me that this baby will be no different. Aidan is an absolute hoot these days, entertaining us with his creative antics and absurd energy levels. Now that his language has finally developed, he speaks incessantly as though making up for being a slow starter, asking questions without waiting for a reply. He trails behind me everywhere, words streaming out at a steady rate. Even when he's playing quietly or watching TV, sound still dribbles from his mouth like a leaky tap. He is also constantly on the move, running, skipping, jostling about. He may actually be suffering from some kind of undiagnosed Skittish Child Syndrome.

About a month after our decision Darryl and I take Aidan to the hospital for his regular appointment. The Professor is away and so we see a different respiratory physician. She's a young woman, about seven months pregnant herself. Darryl explains that I'm pregnant and the baby has CF. His French is pretty good, but she's sure he has made a grammatical error and attempts to fix it.

‘You mean to say that the baby
doesn't
have it, I believe.'

‘No, unfortunately, it does. But we have decided to go ahead with the pregnancy anyway.'

‘Mr and Mrs Biggar, you are misinformed about what this means.'

‘No, we do realise that it is a serious illness.'

‘Then certainly you must reconsider what you're doing.'

Darryl's not impressed by the direction of the conversation. ‘Look, we have thought long and hard about it. It has not been easy or a decision we have taken lightly. But we believe it's the right decision for our family.'

She shakes her head, looking from Darryl to me and back again, like she absolutely cannot fathom what could be going on in our dimwit little brains. ‘I will speak to the Professor about it,' she says, her words clipped.

I have been busy biting my tongue into tiny pieces, sitting quietly in my chair and trying to stay out of this emotionally charged conversation. But the paternalism of her final comment is more than I can bear. She has no idea, absolutely no idea what we have already been through with the last pregnancy, our longing for more children, our struggle to make the ‘right' decision. Seeing her pregnant with her own—presumably well—baby throws who-knows-what-else into this already complex psychological mix. Jealousy? Anger? My French stumbles under pressure.