The Upside of Down (6 page)

After fifteen minutes working the crowd I approached a middle-aged man who was standing alone. Thrusting my sheet towards him with a smile I said, ‘Hi, I'm Susan, can you help me?'

He smiled in a rather sweet, surprised way and took my sheet, handing me his. ‘I'm Geoffrey. Uh, I guess it depends on how you can help me.'

We spent the next few minutes joking back and forth with each other about what crazy things we had or hadn't ever done:
Have you ridden on a camel? Do you sleep with your socks on?

About then I noticed Darryl hovering nearby with an agitated, I-need-to-talk-to-you look on his face. I ignored him and continued the banter with my new friend until he was drawn away by our host. Darryl immediately hustled me into the corner, like corralling a wild animal.

‘Do you know who that is you've been speaking to?' he barked, both exasperation and embarrassment in his voice.

‘Of course I don't know who he is. I don't know who anybody is, remember? But he's nice and he signed-off on two of my boxes.'

‘Sue, forget about the boxes. You just asked the former Prime Minister of New Zealand if he wears socks to bed!'

***

Now, just a year after arriving in New Zealand, here I am facing a towering wall of adjustment, far bigger than any cross-cultural clash I have ever experienced. How do I live well—and teach my young son to do the same—alongside an illness that has the potential to overshadow everything?

My priority now that Aidan is better is to restore joy to my own life. Knowing I have found tremendous pleasure in exercise and being outdoors, I decide that's a good place to start. By this time we have bought a house in the sleepy community of Island Bay. A semi-restored 1921 cottage, it's not terribly practical for a young family: deposited on the side of a hill with no steps, we reach the house via a footpath past two other houses. Our view peers out over the village and on towards the South Island. The suburb is bracketed by steep hills with a narrow valley leading out to a bay where an island rests in the sea, almost as an afterthought. When the southerly wind sweeps up from Antarctica our beach can be its first landfall and it is often bitterly cold, even in summer. Despite the exposure, Island Bay must have been an early settlement because 100-year-old houses dot the streets and rest uncomfortably halfway up the steep inclines. The town is quaint and quiet and from the day Aidan is born I'm determined to get out with him and explore the neighbourhood.

I soon realise that slowly pushing a pram around town is not going to work for me. Luckily I have roller-skates. Not just any skates, these are the old beige four-wheelers with the big brake tucked beneath the toe, identical to those worn by waitresses on wheels at American drive-in diners. After a couple of nerve-wracking incidents trying to pick my way slowly down the steep hill from our house—on skates—while grappling with the pram, I decide to walk down sock-footed before setting off.

Once en route, we love it. Okay, at several months of age Aidan doesn't say much but I take his silence as tacit assent. Skating through the streets with the brisk wind whipping my shirt and hair into a frenzy is liberating. It's total escapism from dishes, mouldy grout, piles of tiny soiled clothes and the weight of worry. Exercise, especially outdoors, quickly becomes crucial for me, where I search for hope and help. As we break out to the coast road, the sea is smashing heavily into the rocks, sprinkling us as I propel the pram forward.
Push glide pray, push glide pray, push glide pray
.

Occasionally we stop at the Brass Monkey, a cosy shack of a cafe which sits on a curve of the coastline, facing the open sea. It is always snug and serves comforting staples like clam chowder with homemade brown bread and mugs of hot lemon, honey and ginger. I gape across at the water, sometimes tranquil, other times raging, cuddling my cherished little boy tightly on my lap. These are good days.

One morning we leave the skates behind and head into town to meet Darryl for lunch. Aidan's in the pram as we walk up to Darryl's office; although now about three months old, he's still very small. In fact, he looks something like a cross between a baby and a pinto bean.

‘Oh, hello. How are you, Susan?'

I turn to see a couple I know only vaguely, the wife is a colleague of Darryl's. They were aware I was pregnant, but haven't heard that our baby was born prematurely. Or that he has been diagnosed with cystic fibrosis.

We plough through the standard see-saw of new baby chit-chat.

‘How was the birth?' Are you getting any sleep? And finally it comes, the question that opens the door, the one I'm half wishing for and half dreading: ‘So, he is totally fine now?'

I pause momentarily, wondering about the question, which was asked in an assume-the-positive manner: ‘He
is
fine, isn't he?' Not sure what to make of that—and not yet practiced at reading social clues about illness—I plunge in.

‘Actually Aidan has cystic fibrosis, a genetic condition which means …' Mistake! Reverse! But, of course, I can't. The words are out and the couple appears to have been stricken by a severe attack of social awkwardness. In unison they begin an odd chorus of shifting their weight, shuffling their feet and glancing at their watches. Clearly there are other things they would rather be doing, like having major dental work. I quickly wind up the conversation and hurry away to find Darryl.

‘I feel totally humiliated,' I tell him after dishing out all the details of the encounter.

‘Why? It's their problem if they can't handle talking about this.'

‘I don't know … I just don't understand what happened. Is illness one of those ultra-personal issues, like sex and salaries, which aren't meant to be discussed?'

‘Maybe it's just them. They might be expecting a baby and are panicked that it could have an undetected genetic condition.'

‘Yeah, so faulty genes aren't contagious—speaking to me isn't going to increase their odds of getting some mixed-up ones.'

Whatever their problem, it's clear I need to develop a barometer for judging with whom, when and where to talk about Aidan's health. This feels particularly important as I know so few people and am still finding my feet in a new country. I also want to learn to communicate a true picture of the reality of our lives. For example, I am regularly characterised by other parents as some kind of Wonder Mum: doling out pills, dealing with doctors and living with a dodgy future.

‘I could never do what you do,' they tell me.

Really? What would they do? Cancel the doctor's appointments? Stop giving the enzymes and antibiotics? Choose to
not live
with a dodgy future? They would do just what we're doing, what all people with chronic illness are doing. They wouldn't always like it, but neither do we.

***

Nearly six months into our new life as parents, living not only with a new baby but also a messy and demanding chronic illness, it's clear that we need some time to regroup as a couple. With our fifth wedding anniversary approaching I'm determined to make it something out of the ordinary. Our tradition for anniversaries is to rotate the responsibility for organising it—Darryl does the even years and I do the odd.

A month ahead I begin scheming quietly, since maintaining the surprise is essential. Raewyn will come to Wellington to watch Aidan for a night. She's a wonderfully capable mother and grandmother, yet it's clear she'll be nervous taking this on—and so will we. She will be mixing up Aidan's special formula, calculating and feeding him his enzymes, and worrying about everything that could go wrong. Talking with her about the details of Aidan's care highlights the challenge to my carefree approach. I always wanted to be a relaxed mum, taking things in stride, throwing a change of clothes and a few nappies in a backpack and heading out the door, baby in tow. Maybe that just will never be.

Within a few days of looking for a venue I'm certain I have found the ideal place. Only an hour's drive away, the house is extraordinary. My book describes the Maungaraupi Country Estate as ‘a grand two-story Tudor style mansion of 10,000 square feet, this historic house was built in 1906 and set in five acres of native bush, extensive lawns and lovely gardens.' This will be just the spot for us to find our legs in the relationship again.

‘No, I'm sorry,' the owner tells me when I phone to make the booking, ‘we have no availability that weekend.'

‘Oh no. My husband and I have had a really challenging year and I was hoping to find something special for our anniversary.'

There's a long pause from her. ‘To tell you the truth, it's not that we're booked up, but in fact my husband and I are going away for the weekend ourselves.'

‘Oh, I understand.'

‘But … we will have the caretaker out in the cottage … She could possibly do breakfast for you, but you'd have to go into town for dinner. There are some excellent restaurants that I could suggest …'

‘Do you mean we could stay there on our own?'
With the entire mansion to ourselves!

‘Uh, yes. It would mean that we couldn't provide the level of service we normally do … But you would certainly have your pick of rooms.'

I cannot believe my ears. She may as well toss in the family silver too. This just would not happen in New York.

I love New Zealand.

Several weeks later, on a bitterly cold winter day, I pull the car off the road and enter a curving, pebble-strewn driveway. The house sits like a queen at the end of the driveway, dignified, confident. The front door, heavy as a bank vault, is ajar. ‘Hello. Hello?' We tiptoe down the hall, peeking into the lounge where a fire is crackling and hissing in a fireplace almost big enough to walk into. Further down the hall, we find a dining room dominated by a massive antique Kauri table with seats for 20. We're in the billiard room when the caretaker appears. Dressed in jeans and a T-shirt, she doesn't quite fit my expectations, like stumbling upon Sophia Loren in her tracksuit, fluffy slippers and no make-up. But she's holding a tray of tea and cakes for us, more or less making up for the jeans. She leads us back into the lounge, setting the tray down in front of the fire. After giving us some restaurant suggestions she disappears, not to be seen again until breakfast.

Perfection. What more could we ask for? Alone together in an empty mansion with a fire that could heat half the North Island, afternoon tea, nowhere to be, and no one to worry about.

But, unfortunately, I decide that's not quite enough. I want to talk.

Not just general chit-chat or dreamy love chatter. No, this is serious talking. The merest hint of the activity sends many men, especially Darryl, racing off to scrape leaves out of the roof gutters, anything. This kind of a discussion often begins with complaints about men not spotting the rotting food in the fridge or never remembering to pay the Visa bill on time. Then it progresses to free-time deprivation, inadequate romance, spending choices and, now, children.

For some irrational reason, I choose this particularly romantic and happy moment to rehash the whole ballgame. The starting point for my complaints is living with illness—as though Darryl is to blame—and the overwhelming nature of that challenge. But before long the discussion has morphed into child-rearing, my dive-bombing career, the trials of a foreign life and damp towels on the bathroom floor. This is ‘talking' taken to an extreme: it's the stuff of men's nightmares.

In a short time the talk has evolved into an argument. Fifteen minutes later, just as we're breaking into a full gallop on the fight-to-end-all-marriages, we stop. Something pulls us back from the brink and we lower our weapons. We have never before fought on our anniversary. What's happening to us? Is this the sinister nature of illness, picking away at our security, at the places where our confidence lies? We quietly get changed and go to dinner. Later that evening, the battle behind us, we briefly sit out on our freezing balcony and then share a bath in a claw-foot tub. Our sleep, which comes easily and lasts past breakfast, is therapeutic.

Maybe the psychologist is right about chronic illness breaking up marriages. Yet I know of marriages failing over much smaller worries and others surviving greater ones. We can't let her warning dictate our lives. It must become just another statistic to defeat.

***

As the months pass and life improves I find that I'm still having a hard time shaking the feelings of injustice over what Aidan may face.

A thoughtful social worker, recognising my anger, gives me an article written by another mother who was thrown unexpectedly into the medical morass. The woman compares her experience of having a baby with a chronic illness to a major change in travel plans. It's as if she has been planning to visit Italy, bought all of the books, imagined seeing Rome, Florence and the Tower of Pisa, and is looking forward to the glamour and glitz of Italian life. Nearly everyone she knows has been to Italy and told her wonderful stories about their experiences. Yet, when she gets off the plane she realises there has been a mix-up and instead she's in Holland.

At first the woman is bitterly disappointed and can't stop thinking about the risotto and fresh pasta she's meant to be eating, about the Sistine Chapel and the stunning Mediterranean. Her anger nearly overwhelms her. But eventually she begins to notice the streaming acres of multicoloured tulips, the windmills and the wild, windswept beauty of the North Sea beaches. She will never go to Italy and there will always be a little part of her which will regret that and will feel the loss of a dream. But Holland, with its unique character, people and understated beauty is also a place where she can be happy.

I need to learn to be happy in Holland.

Late one Saturday afternoon, the tail end of a rare steamy summer day in Wellington, we're outside on the back patio. Darryl is engrossed in building a stand for our hammock while I'm re-potting plants and Zoe, the eight-year-old from next door, is playing with Aidan. He's about ten months old and is becoming extremely Stalinist in nature over his frustrating inability to walk. The little commander has taken up an annoying habit. Standing, bracing himself against the couch as though it's his throne, he hollers incomprehensible high-pitched sounds at us while waving his arms wildly. This means he needs to get somewhere. Now!