The Upside of Down (5 page)

Like many first-time mums I have been committed to the idea of breastfeeding, ridiculously so, as though ‘success with the breast' would somehow define me. As I watch the pre-digested formula shooting Aidan up the growth charts, I casually drop my breastfeeding into our family's change-ofplans basket and watch my son begin to thrive.

***

Aidan's diagnosis is made in an instant, by a pathologist in a lab somewhere, testing blood spots one morning and writing ‘positive' on a piece of paper next to our son's name. Finished, done, off to her morning coffee break. Just like that. But how long will it take to adjust my worldview, faith and optimism to face a life that suddenly seems, well, a lot shittier? We have brought a gorgeous, seemingly perfect baby into the world, but his future feels as flimsy as rice paper.

In some ways it's a blessing that babies keep people very busy and very tired. As long as I'm swept up in the day-to-day practicalities of nappies, food, dishes, laundry, nappies, food, sleep, then I can just about cope. Of course, I rarely have a shower before midday, mail is left unopened and I regularly meet Darryl at the front door after work with teary eyes and a grumpy child in my arms. But my friends with healthy babies are no different, so I try to tell myself that I'm more or less on track for life with a newborn.

However, when life slows down the whole facade threatens to cave in, as I crumble under the fear of what books say usually happens, what doctors predict could happen, what we hope won't happen. Even my faith has been dealt a major blow: how do I turn to a God who has been there so often in the past now that I'm loaded with anger about the hand we've been dealt?

And then there's Darryl. Looking at him, one would think his son has been diagnosed with a cowlick. Isn't it hard enough adjusting to illness without living with Pollyanna, the eternal optimist? To be fair, maybe it's not so much optimism as exceptional coping skills. At least on the outside he's totally functioning: showering, eating meals, going to work, carrying on normal conversations. I manage the first two about fifty per cent of the time, but simply can't fathom producing work, possibly ever again. And as for normal conversations, I'm generally fine and can manage my grief until the cashier at the store or an acquaintance says something overly nice to me, like ‘Hello'. If they go as far as ‘How are you?' I'm in terrible trouble.

It would help if I could at least accuse Darryl of burying his head in the sand. Yet he digs in to the research, reading papers and books and mastering much of the material with ease. And then he does what I can't possibly manage to do: he accepts it. It's as if one morning he gets out of bed and says to himself, ‘Okay, my son has cystic fibrosis. Now, should I have cereal or porridge for breakfast?'

That infuriates me. I mean, here I am contorting myself into a psychological double knot while he whistles his way to work each day. He manages to spend his days happily writing papers for the New Zealand government on competition and regulation—as if nothing ever happened.

The two of us have the same conversation about this again and again.

‘Don't you even care, Darryl? How can you be so relaxed about something so serious?'

‘Of course I care. But how is worrying about the future going to help? I think we need to get on with our lives.'

‘But how can we get on with our lives when we don't know what's going to happen to Aidan? I just don't get it. How can you be so unmoved … I can't simply go on living like everything is normal when Aidan's lungs may be getting worse each day.'

‘What choice do we have? We need to keep him as well as possible and give him the happiest life we can, by being happy ourselves.'

‘I don't know how to be happy living with this.'

I try to back off and let him be, which is about as easy for me as watching him go to work with his fly down and a ‘Kick Me' sign posted on his back. Although we may share some important genes, we have never shared the DNA for emotions. Darryl is more comfortable demonstrating his love by the things he does—alternating night feeds with me, morning cuddles, weekend afternoon naps with our pint-sized baby prone across his chest. When we discuss the future, I can see that his fears are much the same as mine, but our differences in coping mechanisms continue to cause tension.

We also have disagreements about the minor parenting dilemmas: ‘I changed his nappy last time', ‘No, at only four kilos and still all slumpy I don't think he's big enough to go in the seat on the back of your bike …' But we also learn to make up more readily, recognising our dependence on one another: we're in this together and need to make it work. I don't appreciate, and try to forget, the hospital psychologist's warning about the high rate of divorce in couples living with chronic illness.

As the first months pass, the intensity of our life begins to lessen, the way new love slowly mellows. Days and even an occasional week pass with his illness barely entering my mind. In those early dark days it was hard to imagine laughter and beauty returning to our little world. But it does. Each day of living with this condition teaches me more about giving Darryl slack and not panicking so much, about controlling fear rather than allowing it to control me. I learn to focus on the joy in my life, finding it in Aidan, in Darryl, in my spiritual life, in the outdoors—in all the places I experienced it before illness hijacked me.

And Aidan's well, very well. Each day, week, month of good health buoys my spirits. Every kilo he puts on takes one off my shoulders. While still reading as much medical information as possible, I'm also realising that life is more liveable if I concentrate on the success stories. Call it denial, but if there's a friend's nephew who's thriving with CF at age fifty-four then there's no reason our son won't someday do the same. Or better.

Everything I have learned about the condition so far has both confirmed the seriousness of our adversary and given me a crack of hope that it can be beaten.

3

ADJUSTMENTS

By the time Aidan entered our life, Darryl and I had been married four and a half years. In that short period, we had lived in three countries on three different continents and in five homes. It would be easy to blame Darryl for our peripatetic lifestyle. After all, marrying him was marrying another world, one which he was unwilling to ditch to become solely American. And besides, he's my husband and husbands are, by definition, easy to blame.

But maybe that's not completely fair, as signs of an international bias were evident before he came into my life. By the time we met, I had finished an International Relations degree, worked in Germany for two years, just spent several months studying Spanish in Guatemala and was launching into a Masters program with a global focus. The wheels had been greased for an international life.

We remained in Stanford, California for the first year of our marriage; I worked as a development director for a nonprofit organisation while Darryl finished his PhD. It was a luscious year as newlyweds, but if I had thought our similarities would overwhelm any cultural or other disagreements, I was mistaken. There certainly were differences, both big and small.

One morning I stepped out of the shower to find him frantically searching under pillows and through backpack pockets as though hunting for an unexploded bomb.

‘I can't find my khakis anywhere,' I heard him say. Unable to fathom the urgency of this, as he was already dressed, or why he expected to discover them stuffed into a backpack pocket, I tried to help.

‘Have you tried looking in the closet? That's where I would normally put them.'

‘The closet?' he repeated, staring at me like he didn't know whether to thank me or call the police. ‘Why on earth …' trailing off as he headed towards the bedroom.

‘Because that's where clothes are supposed to live.'

‘What are you talking about? I said CAR KEYS!'

Attempting to adjust to his non-American vocabulary, I soon found myself getting in the
lift
and going down the
footpath
to the
dairy
. It was a two-way street as Darryl came to understand that in America chips are
fries,
crisps are
chips,
only a couple can be
engaged
(never a telephone), and the toilet is always called the
bathroom
, whether there is a bath or not. For me, the car was the most confusing and I ended up with a jumble of
boots
,
bonnets
,
glove-boxes
and
windscreens
.

Any marriage requires adjustment, I told myself. As other newlyweds learn to take out the rubbish and squeeze the toothpaste from the bottom up, so we found ourselves adjusting not just to cultural and linguistic differences, but emotional ones also. From the beginning, we differed in our attitude towards conflict and communication. I have always tended towards the ‘get it all out there' approach, which was how the game was played in my household, comprised of five women and my poor old dad. But Darryl, possibly because he was raised in a home with the ratio of four men to two women, would rather hum a merry tune and get on with life—preferably avoiding working through issues pieceby-painful-piece. These differences, though irritating, were manageable when it was just the two of us disagreeing about holiday plans or trying to decide on a movie at the cinema. They would prove far more challenging when the stakes were raised several years later.

After Stanford we moved to London. Darryl taught at a university and I worked as a writer and ran special projects for an international aid agency. Over the two years there we provided a place to stay for travelling New Zealanders and Americans, hosting seventy-five friends, three of whom remained with us for more than six months each. The toilet overflowed repeatedly, the fridge was forever empty and we ran regular tours to the Imperial War Museum. During that time we travelled across the UK and Europe, including visiting friends on a remote island in Sweden, crashing our motorbike in Crete and nearly wrecking our relationship on a mid-winter tandem bike tour in Cornwall. With a ‘date night' every Thursday to defend our marriage against the chaos, we were happy.

Yet after two years in London we were ready to start thinking about a family and our grimy surroundings and hectic life made it feel out of reach. Darryl had been living overseas for ten years and wanted to go home, so when he received a job offer from the New Zealand government, we jumped at it.

***

Wellington, New Zealand's capital, rests on the bottom lip of the North Island. It's relatively small, with a population approaching 400,000 and holds the distinction of being the southernmost capital city in the world. It is reminiscent of San Francisco: hilly, packed with stately Victorian homes and surrounded by water on several sides. We quickly discovered that, like San Franciscans, most Wellingtonians are devoted to the place and its idiosyncrasies and wouldn't consider living anywhere else.

I had only been to New Zealand once before this move, seven months after our wedding. On that visit I had found it a lush, green land where rain and sheep are plentiful and the people relaxed and gracious. I was welcomed into Darryl's circle by his family and friends, taken house-to-house for a nonstop food-fest and more cups of tea than I'd normally drink in a year. In fact, the three-week visit had been part holiday, part marriage course as meeting New Zealand was like meeting my husband again for the first time. His attitudes and behaviours began to make sense there, as though watching a blurry picture come into focus.

It wasn't until that first trip that I began to understand why Darryl is so trusting of strangers and, in my view, careless about security, rarely locking the car and regularly leaving his keys in doors. While on our visit we went to some outdoor thermal pools. There was no attendant, just a sign with prices and an ‘honesty box'. A similar box appeared at a blueberry-picking farm hundreds of kilometres south. When we turned up in a small beach town with nowhere to stay, the owner of the surf shop rented us a catamaran and, upon our return, handed over directions and the key to his house. We ate fish and chips wrapped in newspaper and spent the evening square-dancing at the hall with him and other locals before spending the night on the floor of his living room.

One of the aspects of New Zealand that surprised me the most was its wild, untamed nature. I had expected trimmed lawns and deciduous trees, but was met with jungle bush and native plants such as Manuka and Pohutukawa which grow wildly or bloom in stunning colours. Even the beaches were less predictable than I anticipated—some, white sand and turquoise water, others black pebbles, cliffs or rocky outcrops overlooking tumbling seas. Interestingly, I could already see that defiant, untamed side in my new husband. Smart and able to ‘follow the rules' but contrasted by a burning desire to push the limits and a fierce independence. These were things I admired in him then, but which would test our relationship in the years to come when serious pressure would be placed on us.

Arriving in New Zealand the second time, on a one-way ticket, I was surprised by the daunting nature of anonymity. If we had been moving to my hometown near San Francisco I might have still known people. My roots are there. When visiting California, I inevitably bump into a classmate from high school at the bagel shop or spot my inspirational English teacher having breakfast at
The Half Day Café
. Certainly if I linger long enough at the post office I will recognise someone. It's that kind of place. I never realised the enormous value in having points of contact with people, a common background and shared memory base. My parents' friends knew me when I was climbing trees, later with pimples wishing for boyfriends, and now as a woman. A history exists there. In New Zealand, there was none. I was unknown.

We hadn't been in Wellington long when we were invited to a party by one of Darryl's new work colleagues. It was a warm summer night and there were at least fifty people congregating outside on the spacious deck with plenty of laughter and a generally friendly atmosphere. To our surprise, we were both given a sheet of paper with boxes, each box containing a statement like
Been trekking in Nepal
,
Eaten guava ice cream
, and
Never owned a passport
. The goal was to find people who could sign-off on each box. I have friends who would rather scrub the toilet than play a game like this, but as an extroverted American I was finally in my element.