The Upside of Down (20 page)

One nurse named Nicole is particularly tender with Oliver, speaking slowly and kindly. It's not clear whether he understands her French but he feels safe with her. In fact, his first steps are taken across the floor of our little ‘motherbaby room' (which they assigned to us immediately this time) from my arms to hers.

During this hospital stay many of our latent differences in approach come to a head. The ‘No Child Visitors' policy decimates any hope for family cohesion or normalcy, preventing the four of us from being together except for brief excursions off the ward for Oliver. We want someone with Oliver all the time while the staff feel we ‘hang around' the hospital too much, getting in the way. We expect explanations; they think we don't trust them. We worry about Oliver's emotional state; they complain about ours. From food to beds to respect, we struggle to find common ground. Possibly if we had avoided the hospital stint in California we might have left our foreign set of expectations at home, accepting the French approach more easily. But whatever the reason, we're unable to agree to aspects of the care. We feel uninformed about progress, don't know who's doing what and fear there's no end in sight.

Three weeks into our stay we decide to post a carefully worded note in French on the door of Oliver's room. The sign reads:

‘We would greatly appreciate it if the staff would please introduce themselves to us, explain what treatments they will be doing and inform us of any changes to Oliver's care. Thank you very much for your kindness in this matter.'

One hour later the chief nurse, who looks by facial expressions and mannerisms to be a close relative of Scary Man, appears at our door.

‘
Madame, le Professeur
would like to see you and your husband in his office at five o'clock.'

This cannot be good.

That afternoon, the Professor greets us warmly in his cramped office, piled high with stacks of medical journals and case notes. Computers are dotted around the hospital though not in any useful way; an ancient IBM nearly buried under paper sits silently on his desk. After weeks in the hospital, hearing no English, we're less fazed by medical discussions which are fully in French.

‘
Bonjour, Monsieur et Madame Biggar,
I understand from my team that there's a problem. What is the matter?'

Darryl and I throw guilty glances at one another, as though we've been called into the headmaster's office. Caught in the act of complaining! Are we accused of trying to bring respect, communication and partnership to the French healthcare system?

Thankfully it's Darryl who begins, speaking far more diplomatically than I would. ‘Uh, I think it's about expectations and maybe cultural differences. We have a slightly different view of how things are meant to work, I guess.'

‘What exactly do you expect to be different?'

‘For one thing, staff constantly come and go from Oliver's room—we don't know who they are or what they are going to do. We want to prepare Oliver, to translate for him, to help him get through it. But often we don't even know what's happening.'

‘It's our policy to inform you when we have new information.'

How do we explain that it's not only ‘being informed', but questions of communication more generally? Can he understand that we need to have an actual role in Oliver's care and decisions about that care? Are we wrong to be concerned about managing Oliver's fears and emotional needs? It sounds so pretentious to say we want to be a member of the team. After all, who are we? What credentials do we have?

But that's what we want.

I chip in with another concern. ‘Oliver is still nervous here. We need to work with him to manage his fear, so it would help if we were told what procedures would be occurring and when.'

The Professor is staring hard at us, concentrating, like someone struggling to understand a complex maths problem. He doesn't get it. I continue. ‘We need him to trust us. When people just barge into the room it's very difficult for him—and for us.'

Our background and experiences have not prepared us for the French approach. The American healthcare system taught me to ask as many questions as I could, hopefully in the nicest possible way, and expect answers. New Zealand's holistic approach is very different to the French way.

Several days after our meeting with the Professor I receive a formal visit from the staff psychologist.

‘I am concerned,
Madame
, because the staff tell me you are here every night and most days …'

‘It's true that I'm here much of the time. My one-year-old son is currently hospitalised.'

‘But you need time for yourself. You shouldn't be here so much.'

‘Actually, it's not always me; sometimes friends and family relieve me and stay with Oliver.'

‘But you don't need to leave people here to watch him; the nurses will do that.'

‘Do they have time to play with him? To take him out of his cot and walk around the room? To go for walks outside?' I have seen the long-staying babies on the ward, many of whom appear to have few visitors. They sit passively, staring at the bars of their cots.

Exasperated, she continues.

‘
Madame
, go meet your friends at a cafe. Go shopping and buy yourself some new clothes. Let the nurses and doctors get on with their jobs.'

Of course! Why didn't I think of that myself? I'll feel much better about my son's condition and his rapidly worsening psychological stress if I stroll down to
Printemps
and drop a few thousand francs on a new outfit. I must have been deluded in thinking we were helping the staff get on with their jobs by playing with and feeding Oliver, by caring for our child.

Clearly, we're still not speaking the same language.

After some improvement in his cough—though without any definitive understanding of the source of the problem—Oliver is finally released. That day I huffily swear to Darryl that within a month I'll be on a plane out of France forever.

It turns out that following through on threats is not one of my strengths. Once we're away from the hospital, back home again in Suresnes among friends, I begin to relax. For months to come, when we show up for a clinic visit I begin mentally packing my bags, fearful of future inpatient stays. But—
thank you, thank you, thank you
—whatever had been troubling Oliver's lungs that dreadful summer clears up. Neither he nor Aidan are hospitalised again in Paris, which probably explains how I manage to stay another three years.

12

HERE AND THERE

Before having kids, ‘international travel' was a glamorous term, a happy little construct I associated with freedom, adventure and exploration. During my two years living in Germany directly after university I flitted through many countries, from Sweden to Croatia to Hungary to Israel, heading off for weekends away on short notice carrying little more than a passport and a change of undies. When Darryl and I lived in London we were slightly more weighed down by our jobs, house guests and other commitments but still managed nearly effortless jaunts to the Continent.

However, after adding two small children with a complex condition to our lives, international travel has come to mean an enormously challenging physical and emotional experience, one that lasts far longer than the trip itself. The anguish of long-haul flights with young children begins weeks in advance. Will they sleep? Will I spend sixteen hours dragging a hollering nineteen-month-old back out of First Class? And, upon our return, the pain of the trip lingers through a minimum of four post-trip nights reading
Big Red Barn
and watching
Wiggles
videos with them at 1:30am as they adjust their stubborn little body clocks.

Each time we plan a trip, Darryl and I enter into the same dialogue about the risks and benefits of travelling so far with them. Even if we limit our air travel only to visits to our families, with one half in the US and the other half in New Zealand, that still makes for a lot of air time. A week or so before a planned trip to New Zealand my French language teacher raises the issue with me.

‘Susan, it isn't right that you are flying so far with your children.' After several years of studying with this woman I'm accustomed to her forthright manner.

‘What do you mean it's not right? Because of the jet lag?'

‘No. You are taking a risk with their health by having them on the plane with so many other people for such a long time,' she answers in quick French, her hands whipping around, stirring the air in front of her as she speaks.

‘Aidan and Oliver are both fine now and we don't have any evidence that they've picked up bugs on the planes in the past.'

‘Maybe not, but that doesn't mean it couldn't happen. It's rather cavalier of you and Darryl. Is it really necessary that you travel?'

‘If we want the children to know their grandparents and their extended family then we have to travel. This trip is for Darryl's mother's 60
^th
birthday party—it's a surprise that we're coming.'

‘Couldn't you take a boat or something?'

‘All the way to New Zealand? That's a very long way. I think we would miss the party.'

It's true that our total travel time will be long; because we're going via the US, it will be more than thirty hours door-to-door. But thankfully Aidan is now five years old and Oliver almost three and they will hopefully be better travel companions.

About twenty-two hours into the journey to New Zealand, I become distraught by the lack of sleep and the general irritation of my children. I'm ready to use the emergency exit. I'm sure this must be why families with young children aren't allowed to sit in the exit rows: it's too tempting.

‘I'm going to the bathroom,' I announce to Darryl who glances up at me glazy-eyed, not listening. I pass Oliver across to him. ‘I just can't cope anymore … I'm too tired.'

Picking my way carefully down the dim aisle, tears of exhaustion cloud my eyes, making progress slow. I pass row after row of sleeping passengers, several even snoring, which is pretty bragging behaviour on a long-haul flight. Aidan and Oliver have been managing to tag-team on sleep with one of them awake the entire trip. I lock the toilet door, sit down and settle in. I waste a good quarter of an hour examining the soaps and lotions and kill at least another twenty-five minutes pondering the absolute senselessness of marrying a man from the other side of the world. What was I thinking? There must have been plenty of perfectly decent American men. I'm not sure where the time goes but about forty-five minutes later I feel sufficiently recovered to return to my seat. By now Darryl, who hardly acknowledged my departure, leaps up when I return.

‘Where were you all this time? What happened to you?' he demands.

‘Oh, I just went down the road to the cafe for a coffee.' Panic sweeps briefly across his face—
she really has lost it
—before I relieve his fear. ‘Oh come on, where do you think I was? In the bathroom, of course!'

‘For three-quarters of an hour? That's ridiculous.'

‘Go try it yourself. You'll feel much better.'

***

While in New Zealand we organise to have the boys seen at the CF centre in Auckland. With Darryl's family here, we may end up living in the city one day. Even if we don't, we're learning that every place we have lived has different ideas about quality CF care—what it looks like, how it should be done. The more approaches we're exposed to, the better able we are to judge what works for our kids.

On the day of our appointment, we park and walk the short distance across the parking lot to the children's hospital, unexpectedly named Starship.

‘Oh wow!' Aidan is stunned as he stares up at two enormous banks of Willy Wonka-like glass elevators just inside the front door. ‘Mum and Dad, look at this!' he yells, running to the railing. The four of us are staring down at a large, modern indoor playground, right in the middle of the hospital. Looking up we can see the rest of the hospital rising above us, each level painted a different primary colour, all with views down to the playground. ‘Is this really a hospital?' asks Aidan, unable to believe his luck.

Jan, the CF Coordinator, and Alison, the lung doctor, are thorough, professional and patient as we plough through our list of questions. There are few simple answers to long-term worries about bugs and future troubles, yet they are honest and factual without being fatalistic. We need this conversation.

But then it's time for a blood test. At this stage, neither Aidan nor Oliver is coping with needles. In fact, they haven't been coping with hospitals in general, despite a period of staying very healthy. We are beginning to blame their fears on the rigors of the French
hôpital du jour
. An annual check-up, the
hôpital du jour
begins very early in the day, usually about 7:00am, both kids having fasted since midnight. Once we reach the hospital in Paris, the kids are each checked into a bed, then weighed and measured and we are given a program of the day's events. Darryl and I then separate, each with a child, to criss-cross the expansive hospital grounds for a variety of tests. The schedule usually includes lung function, ultrasounds, X-rays, scans, any specialised exams that have been ordered, blood tests and physio. Clinically excellent, no stone is left unturned. But so little thought is given to when the kids will eat, how to minimise the emotional impact of the more difficult exams or how to ease their fears. The atmosphere is stern, professional, unrelenting. The kids are distressed and exhausted by four o'clock. Emotionally, we are a wreck.

Back in Auckland, things are different.

Alison turns to Aidan. ‘Okay, Aidan can you just hop up here on the table?' She obviously has the mistaken impression that this task is going to be completed without handcuffs or hospital security.