The Upside of Down Read online

  Praise for The Upside of Down

  ‘A rare combination of laugh-out-loud humour and an intensely honest exploration of difficult issues … It’s like Eat, Pray, Love but with children, a husband and health issues along for the ride! Anyone who has ever experienced illness in their family or considered an expatriate life will want to read this book.’

  —Andrea J. Miller, Shares in Life Foundation, NZ

  ‘Susan Biggar’s firsthand account … gets to the heart of the patient-centered care movement that is rapidly spreading across the globe.’—Dr Susan Frampton, PhD, President, Planetree (US)

  ‘Susan Biggar’s writing will draw you in from the first page and have you laughing, crying and thinking deeply. This vital book will inspire both health professionals and patients to think differently and envision a world where we work in partnership for the best possible healthcare.’—Dr Catherine Crock, Executive Director, Australian Institute for Patient and Family Centred Care

  ‘I finished the last half of this book in one sitting—couldn’t put it down. This is an engaging and compelling story of facing chronic illness and making tough choices with courage, hope and heart.

  —Carroll Jenkins, Former CEO, Cystic Fibrosis Research Inc (US)

  ‘Cystic fibrosis is the most common inherited disease affecting children in many countries, including the United States, Britain and Australia. Susan Biggar writes with style and verve, and this book will win a wide audience amongst the thousands of people affected by CF as well as the healthcare professionals working in the field.’

  —Dr Bob Williamson, Professor of Medical Genetics, University of Melbourne and Emeritus Professor of Molecular Genetics, Imperial College London

  To Mom and Dad

  For a lifetime of boundless—often long distance—love and belief

  And in memory of Raewyn Biggar

  (1941-2014)

  A true friend and perfect mother-in-law

  SUSAN BIGGAR

  MELBOURNE, AUSTRALIA

  www.transitlounge.com.au

  Copyright © Susan Biggar 2014

  First Published 2014

  Transit Lounge Publishing

  This book is copyright. Apart from any fair dealing for the purpose of private study, research, criticism or review, as permitted under the Copyright Act, no part may be reproduced by any process without written permission. Inquiries should be made to the publisher.

  Front cover image: Lauren Marek/Getty Images

  Cover and book design: Peter Lo

  Printed in Australia by McPherson’s Printing Group

  A cataloguing-in-publication entry is available from the

  National Library of Australia: http://catalogue.nla.gov.au

  ISBN: 978-1-921924-75-0

  1

  SURPRISES

  ‘Are you sure you’re in labour?’ Darryl asks suspiciously. His eyelids flicker in the torch-lit room, but remain closed.

  ‘No … I don’t know … I can’t say for sure.’

  ‘Maybe it’s just another one of those false alarms. We could wait a little longer and see what happens.’

  Before I have time to respond, I hear a gentle whistling followed by a slow and steady exhalation. He’s obviously planning on snoozing through this delivery. Sleeping is more than just a hobby for my husband, he’s so accomplished—able to sleep anywhere and anytime—he could add it to his CV.

  ‘Darryl, wake up! Do you want to have a baby here at the gliding club? The midwife told me false labour wouldn’t be painful. This is beginning to feel a lot like pain.’

  ‘It probably just feels more painful because you’re tired …’

  Tired seems to be all he can think about right now.

  ‘Oh, come on. Are you saying childbirth isn’t painful for women who get enough sleep?’

  It’s January 1996 and I’m seven months pregnant with my first baby. As a Californian, I ought to be nestled away safely under my duvet in some leafy San Francisco suburb, awaiting a smooth transition into the maternal life. Many of my more organised friends seemed to casually slip motherhood into their lives over a long weekend, without even changing a dress size.

  But, oh no, not me. Instead, it’s three o’clock in the morning and I appear to be in premature labour, lying in my sleeping bag next to my Kiwi husband on the peeling linoleum floor of a gliding club in the rural Wairarapa region of the North Island. We had intended to go gliding that day but the weather ruined the plan. Thank God, as my mother and mother-in-law would never have forgotten it or forgiven me. Especially given that my mom recently suggested that I ‘start acting pregnant’. I didn’t know just what she meant at the time, but I doubt if flying in an engineless aircraft using only the currents of rising air to stay airborne would constitute pregnant behaviour in her view.

  Leaving our sleeping bags and gear behind, we climb in our old Toyota Corolla and drive down a dusty and bumpy road to the nearest town to find a phone. As I wait in the front seat, fidgeting nervously with the gearstick, Darryl disappears into the booth to call the local country hospital just fifteen minutes up the road. He emerges with a report.

  ‘Um, I called Masterton Hospital. They said our baby would be too small to be born there.’

  ‘What? Do they have a size limit on babies? How can they turn us away?’

  My eyes glance down to my undersized stomach which, up until now, had seemed like an unexpected benefit. In fact, my tummy’s so flat that a number of acquaintances don’t yet know I’m pregnant.

  ‘She said we need to be at a bigger hospital with a baby this premature.’

  This news is like shooting adrenaline into my womb, the contractions speeding up and my half-contained anxiety streaming to the surface.

  ‘Call the midwife, please!’ I say through the open car window, panting with fear, trying to resist the creep of self-pity.

  Darryl slips obediently back into the booth but pops his head out almost immediately.

  ‘Sorry, but the phone card just ran out of money. And, unfortunately, this phone doesn’t take coins. Do you have a card, Sue?’

  ‘That one was mine, remember? Don’t you have one?’ Tipping the contents of his wallet on the bonnet of the car, searching, he shakes his head. A few minutes later, after negotiating some complex terms of payment with the telephone operator, Darryl’s in touch with the midwife.

  ‘My contractions are every five minutes now,’ I call out to no one in particular, baring my teeth in an unattractive, snarling dog way.

  A moment later he hangs up the phone, steps out of the booth and then stops to carefully place all of the cards back in his wallet before slowly getting in the car.

  ‘Okay, the midwife says we should drive to Wellington,’ he explains while tuning the radio station, as if passing on a message about overdue library books. ‘If the pain worsens or the contractions become more frequent we need to call an ambulance.’

  ‘Doesn’t she realise we have to drive over the Rimutaka mountains to get there? That will be ninety minutes and we would never find a phone booth on this road.’

  ‘Good point,’ he says, nodding. ‘I guess we had better get moving.’

  The Rimutaka road is remote, narrow and winding. It’s a route we might choose on a sunny Sunday afternoon to enjoy the spectacular views back over the Wairarapa valley and its magnificent vineyards. But only with a sturdy stomach. On this particular night, light rain splatters on the windows and a low-hanging fog surrounds the car, closing in around us, thick and palpable. Like fear. I begin to pray in short sentences, slurring my words, drunk with worry. Please, please, please.

  I then start repeating soothing mantras in my head. Everything’s going to be fine. I’m okay. The baby will be okay. Everything’s going to be fin
e. I’m okay. The baby will be okay. Everything’s …

  It’s nearly five o’clock in the morning by the time we arrive in Wellington, a capital city which can look slightly sleepy even on a bustling day. Before dawn on this morning in January, the height of summer when much of the nation is still away lounging at the beach, we don’t see a single person on the street. It takes a few minutes of knocking at the door of the delivery ward before we’re admitted. Even after living out of the US for half a dozen years, I’m still grateful for New Zealand’s excellent public health system which means we’re not asked for either proof of insurance or a credit card prior to entry.

  We’re quickly led into a small single room where I’m hooked up to a monitor. Our midwife, Karen, arrives at the hospital just after we do, with matted hair, a crumpled blouse and surprisingly tidy lipstick. I have seen her regularly throughout the pregnancy and I know she has been delivering babies for twenty years; her presence is a relief. A doctor arrives about the same time. Yes, he says matter-of-factly, the baby looks okay. And, yes, it is on its way. Today. Definitely.

  I am tempted to grab him by the collar—our doctor with his wire-rimmed glasses and pimpled face who doesn’t look old enough to drink a beer much less determine when babies are coming—pull his face close to mine and yell, ‘Do something about this, please. I’m not ready to have a baby!’

  When the adolescent medic leaves the room, Darryl and I both dissolve into sobs. My tears aren’t surprising—I cry as well as he sleeps—but his are unsettling, seen so rarely in our time together. He is generally a brick; calm and reasoned. But now he looks rattled with his tired blue eyes and unbrushed mess of hair. He’s still wearing the faded black sweatpants and Stanford T-shirt he wore to bed last night. He rubs away the tears with the back of his hand. In a way it’s oddly reassuring to see him crying; the responsibility is not mine alone to have this baby properly.

  All I have with me is what I’m wearing: a grubby shirt, black biking shorts and thongs. What about the soothing Mozart and organic nibbles for energy in labour that I assumed I would have so much time to organise? We planned to get everything sorted in the final two months of the pregnancy, after this holiday with Darryl’s family. We had hiked and camped around the tip of the rugged Coromandel Peninsula further up the North Island then sprawled lazily at Waihi Beach with the relatives at their cosy old beach house. After Waihi, Darryl and I had crammed our Toyota full of beach gear, windsurfers and his two brothers, Grant and Kevin. All four of us are over 6’2” tall. At our wedding in San Francisco five years earlier, Grant (6’7”) had quipped that Darryl was marrying me because I was the only woman to meet the family height requirement. Funny. Well, funny until you’re trying to pack twenty-five feet of family into a compact car. After leaving Waihi we had driven south to the gentle Wairarapa, where Darryl and I had planned on a few days of gliding while the brothers continued on to Wellington.

  Because of the holiday, and our tendency towards last-minute-ness, we haven’t managed to shop for the baby clothes, cot, pram or car seat, nor have we started converting our office into the baby’s room. It’s still housing a desk, filing cabinet and old boxes. As for names, there isn’t even a shortlist.

  ‘Are you going to the cricket tonight?’ asks a red-headed nurse to someone behind her as she enters our room, passing by the end of my bed and stopping with her hand resting lightly on my foot. ‘Susan, I’m just going to put the monitor back on, okay?’ I nod in reply. Just then a contraction hits and the nurse dissolves from my view as I focus on the progression of the second hand on the wall clock. Five, ten, fifteen seconds. Breathe. Twenty, twenty-five. As the jolt fades, the nurses’ conversation breaks in again.

  ‘Rick is trying to get me to go with him to the cricket but, my God, how much of it can you take in one summer? So I said to him, “What about going to the movies instead. Apollo 13 is just out and I thought both of us might like that.”’

  ‘Yeah, so what did he say?’

  ‘Oh, you know that whining-boy-tone, “But the cricket season is only here for such a short time …”’

  ‘They always say that. But as soon as cricket is over it’s time for rugby season!’

  ‘Exactly.’

  The nurses are kind, though, like the doctor, appear disturbingly underage. And their bedside chatter is unsettling, so far removed from the forever nature of the responsibilities about to descend on us. I thought I had heard all of the hard-core tales of parenting, but mostly they warned of disturbed sleep and vomit on your best blue blouse, not babies calling the shots on when to arrive.

  One of the nurses offers to take Darryl upstairs to the Neonatal Unit. I watch as my normally oh-so-relaxed husband mutely follows her out of the room. I can see that he’s trying to digest the news of his looming fatherhood, chewing on it, forcing it down, like swallowing tough meat. Upstairs she points out babies of similar size to what ours might be. After twenty minutes in the Neonates, he returns with little to report.

  ‘Well, what was it like?’ I prod, after he sits down and picks up the remnants of the morning newspaper.

  ‘Hot.’

  ‘Hot? What was hot?’

  ‘The Neonatal Unit. Apparently they have to keep it warm because the babies can struggle to maintain their body temperature.’

  ‘Did the babies look, you know, okay?’

  ‘Yeah, fine. But small. Very small.’

  A short time later Kevin and Grant turn up with an enormous armful of flowers and broad grins. We had left them just a day earlier after a Mexican dinner, none of us expecting this. Grant was meant to be driving north to Auckland this morning and then flying home to New York; Kevin ought to be at work. Instead they’re here to welcome the first of the family’s next generation and their lightheartedness is just what we need. As they arrive I have just had an epidural and am, well, pleasant again. Darryl describes me as ‘transformed’.

  Hours pass relatively uneventfully as we wait for the labour to get into gear. By midday the brothers have called half the population of New Zealand—not that difficult really—to say we’ll be having a baby today. Grant and Kevin are both single, globe-trotting twenty-somethings. After our wedding Kevin had managed to find work in the Bay Area, loitering around us much of our first year of marriage. He then moved to London the same time we did and lived with us for over a year. Coincidentally, when we moved to New Zealand a year ago he also took a job in Wellington, arriving a few days before us. It’s beginning to feel like we’re being tagged by Interpol. Grant, who also lived in London when we did, is now settled in a banking job in New York.

  Though neither of them are anywhere near having kids of their own, they’re giddy with excitement. I feel less panicked with them here to help us—as though a bigger support crew will somehow sort out our baby’s prematurity. While we wait, the three brothers amuse themselves reciting comments they’ve heard dads should avoid during childbirth. ‘Oops! Which cord was I supposed to cut?’ And, ‘If you think this hurts, I’ll tell you about the time I got hit in the shin with a cricket ball … Oh man, now that hurt.’

  As I lie prone on the bed, monitors watching the baby’s key statistics, the young medical team comes and goes, sprinkling into each conversation more complications premature babies can face. Breathe, calm, don’t panic. I replay my mantras from the car trip, trying to calm myself. My midwife warns us that our child might not come home from the hospital for weeks or possibly months. Months! Luckily our house is only ten minutes up the road, out along the coast in a suburb called Island Bay, but still, how would we manage months here? Piece by piece I watch as the image of normalcy, good health and ease which I have tried to build up over the pregnancy is dismantled.

  Eventually the medical team decides my labour has progressed enough—either that or they’re just tired of the Biggar clan jokes—and we’re moved into the delivery room. Kevin takes up the offer to join us for the birth but Grant declines, a panicked look flashing across his eyes. ‘I’ll call the
family once the baby comes,’ he adds, heading rapidly back down the hall towards the nurses’ station.

  And then, he is here. And he’s a boy. And it doesn’t seem so bad that he turned up early and without a name or a pram. When the nurse hands him to me he’s wrapped up so tightly in a soft white blanket he looks like a little pupa, like I have given birth to a tiny caterpillar. As sweet as he is, he’s also not pink enough, so after a rushed photo he’s swept upstairs to his new home. We are left exhausted and relieved.

  ***

  Later that afternoon my bed is wheeled into the Neonatal Unit. I’m taken aback by the harsh sterility of the room. And by the intensity of the mood; some of these babies appear to be gingerly balanced on the cusp between life and death. Incubators line both walls. Tubes and wires emerge from the tiniest human beings I have ever seen, with the smallest ones looking like they could literally curl up and nap in my hand. My midwife, Karen, steers my bed towards the far corner of the room, squeezing it alongside a large metal table.

  A skinny naked baby is strapped to the table, toothpick arms out to his sides, crucifix-style, while large yellow globes shine down on him. He’s wearing miniature eye patches. A nurse in scrubs and a mask leans over the table, peering intently, as though conducting an experiment. ‘Is that him?’ I ask, looking up at Karen. She nods. ‘Why is he … like that?’

  ‘He is jaundiced, so he needs as much exposure as possible to the lights. Phototherapy is a very common and successful treatment.’ The nurse moves away from the table as Karen pushes me closer. ‘Go ahead, you can touch him.’

  I extend my arm, lightly stroking his soft skull which is covered with a dusting of reddish fluff. He is crushingly beautiful. I notice the tiny wristband simply says ‘Baby of Susan.’ It will be two weeks, and much discussion, before the wording on his incubator, wrist and ankle bands is changed and we finally agree that he will be Aidan.

  The days that follow in Neonates are interminable. Darryl has gone back to his job as an economist at the New Zealand Treasury, just a five minute drive from the hospital on his motorcycle. He visits at lunch, after work and on the weekends. Still an inpatient myself, I am down at Aidan’s side by about eight in the morning and stay there until bedtime. Once his jaundice improves he is moved from the open tray-table to an incubator.