by Susan Biggar
‘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 o
ld 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!
After weeks of this charade, mentally weakened by his badgering, we give in. An acquaintance offers us an ancient, highly unsafe baby walker and, going against all of the parenting books and medical advice, we accept it. The little daredevil loves it—his first car. He drives the walker all over the house. We are generally conscious of the risks and keep him away from stairs and other hazards.
‘I think I’m supposed to be home by now,’ Zoe calls out to us, as she crosses the patio.
‘Yeah, okay. Thanks for coming over, Zoe. See you later,’ I wave casually, barely looking up. Caught up in our activities, neither Darryl nor I notice as she opens the gate and walks down the stairs, leaving the gate ajar.
But Aidan notices. Within seconds he has whizzed across the courtyard in his hazardous walker and through the forbidden gate, crashing down six concrete steps at speed and landing directly on his skull.
The next day he is released from hospital, sporting a sickening black eye but no broken bones or concussion. While it’s a dreadful accident it also feels like something of a watershed for me. It’s a reminder that having a chronic illness won’t stop him from being a normal kid, having accidents, getting stitches and breaking bones. These things will happen. As will adolescence, girls, cars (though, please God, not motorcycles). Aidan will grow up in most ways like other kids, if we allow him to. His accident is the wake-up I need to let him be, not box him up or overprotect him. If anything, he will need more freedom, more encouragement to push the boundaries to overcome his challenges.
If I want to be at peace in Holland—living with CF—I will have to learn to let Aidan live, really live.
4
MORE SURPRISES
There are two blue lines. There should only be one. In an instant, while I stepped away briefly to check on Aidan, a second line has materialised on the miniature white screen, forming a cross.
How did this happen? Okay, alright, I know how it happens. But we have been careful. Jeez, with all our stress it felt like we were nearly celibate this past year. Nearly, but obviously not quite.
This is the result many women desperately desire, what Darryl and I had wanted so much several years ago. But not now. We’re not ready to face the complications of another pregnancy so soon. Aidan is only ten months old. I never imagined I could be pregnant given the difficulty we had conceiving him. At an appointment with David, our GP, the previous day I had naively described a strange set of symptoms which included tender breasts, nausea, and tiredness. I only agreed to the pregnancy test to appease him. Now, in retrospect, it all sounds obvious but denial beats logic every time.
Until Aidan’s birth neither Darryl nor I saw doctors regularly. I might have shown up at the GP’s once a year for some minor gynaecological nuisance, barely remembering my doctor’s name. But now David has become an integral player on our stay-well team, his phone number memorised rather than scrawled on a bit of paper in the back of my address book.
It’s before eight o’clock in the morning when I see the pregnancy result in my kitchen. Darryl is on his way to work, unreachable. So, I run to the phone and call David immediately. I drop Aidan at a friend’s and within fifteen minutes I’m in his office, like there’s something he can do about this. The gloomy clouds of depression have only just begun to clear in recent weeks. Facing a new pregnancy opens it all up again.
David is a gentle and sensitive man, a bit older than me with three young daughters of his own. During the past year he has seen us as often as necessary, taking more time than he probably has available to listen to a litany of concerns and address our anxiety. Despite his calm demeanour, he seems to understand the impact of Aidan’s diagnosis and its weight upon us as parents better than we can right now. He tugs slightly on his beard as he tries to kindly steer me through a brief genetics review, all of which I already know, towards a reality that’s bearing down like a road train.
‘We know that both you and Darryl carry a normal copy of this gene,’ he says, focusing on the positive.
‘Yeah, okay. But we both must also have a “CF” copy of this gene.’ I know that each parent passes on one gene or the other, as we might for hair and eye colour, athletic ability or taste for garlic. Actually, I’m not so sure about the garlic.
‘I know you understand this … but it’s worth repeating that the statistics are the same with every pregnancy—’
I interrupt him. ‘You mean, already having one child with the condition doesn’t make our odds any better?’
‘That’s right.’
‘It would if the world was a slightly fairer place.’
He ploughs on with the optimism. ‘Of course, the good thing is that you have a seventy-five per cent chance that the baby will be healthy.’
There’s a long silence before I speak. ‘It’s funny how seventy-five per cent can sound so promising and so unbelievably frightening at the same time.’
‘I know … I’m very sorry.’
He leans forward as he speaks, looking steadily in my eyes, his words drawing out my tears. I am always moved by expressions of empathy, no matter how hard I try not to be. But his compassion and engagement are particularly powerful in contrast to the emotional distance we have felt from some health professionals this past year.
‘What I’m finding really hard right now, David, is that there’s nothing we can do to influence the outcome.’
The two blue lines on the test confirm that this baby’s genetic future has already been set in concrete and no amount of vitamins, balanced diet or praying will change that.
***
At eleven weeks we will have a decision to make. We can have a test, called chorionic villus sampling (CVS). It will tell us whether or not the baby is ‘affected’, as the doctors call it, by cystic fibrosis. If the answer is yes, we’ll then be faced with a bigger and more vexing decision.
The wait until eleven weeks seems never-ending. As if morning sickness isn’t ample suffering, the mental and emotional gymnastics leave me yearning for my first pregnancy. Back then the biggest worry was not fitting into my favourite Levis. In those days I carried only a vague concern that all parents-to-be have, of something going sour. Now there’s a sense of clear and present danger each time I put my hand to my tummy. Everything around speaks to us about the decision we may face, a constant tug-of-war of the heart and mind.
‘Have you read the paper this morning?’ Darryl asks me, as I reach for the cereal one Saturday at the kitchen counter.
‘No, why?’
‘There’s an article about two girls with CF.’
‘Really? What does it say?’
‘They’re five-year-old twins. They’re already very unwell. It says they go in and out of hospital constantly.’
‘Oh, that’s depressing …’ We’re both quiet for a few minutes, before I continue. ‘Sometimes when I think about the reality of two sets of physio a day, drugs for two kids, hospital trips and the worry and pain, I think—“No, I can’t do it”. It’s so daunting to even consider living with the agony of an uncertain future for two kids. How could we do it?’
Darryl doesn’t respond. A few moments later I go on. ‘But then I look at Aidan and he is fine and, you know, normal, and I think—“Well, maybe” …’
‘I don’t know what to think,’ he replies in a quiet voice.
Of all the things we have stressed about this past year, we haven’t quite gotten around to this one. What would we do in the event of another pregnancy? The short answer, and probably the reason we haven’t talked about it much, is that we don’t know what to do. Sifting and re-sifting through the pros and cons of the issue, we search for enlightenment and clarity. There’s an almost daily see
-sawing back and forth between us about the ethics of terminating a pregnancy for this reason. Both of us have a Christian faith. We view life as a gift to be treasured and cherished, lived to its fullest, respected. Though the question of when that life begins is less clear in our minds.
Somewhat surprisingly, I haven’t thought much about abortion. Maybe, more honestly, I have thought about it but decided it was too hard. All the nastiness I have heard over the years—the easy political sound bites and the angry messages from pulpits—feel far removed from our personal dilemma. I can see why I have sidestepped this in the past, believing it would never affect my own life, letting others fight it out. Abortion? No, that would never be ‘my’ issue.
***
The risks associated with a CVS are low enough (a slight chance of miscarriage), and the agony of waiting nine months sufficiently dire, that we decide to go ahead with the CVS. It’s one of those Big Needle tests, where some fragments of the placenta are sucked out of the womb like tiny strands of spaghetti. Not terribly pleasant. The medical euphemism is: ‘some people find the procedure uncomfortable’, a comment which really makes you wonder about the rest of the people.
After waiting out our eleven-week eternity, things go badly with the test. For some inexplicable reason the doctor, who looks by all appearances to be a doctor, is unable to get the goods. After nearly an hour fishing around in my abdomen for the spaghetti, he packs away his needles and asks us to come back again in a week for Round Two.
Fine. We had nothing better to do this week than chew off our fingernails.
Thankfully, Round Two passes without a hitch. And now we steady ourselves for the serious waiting. If the first eleven weeks was like watching grass grow, the five-day wait for results is more like waiting for Rome to be built. Time comes to an abrupt standstill. Minutes stretch, resembling entire days and each day is a month.
By the time the fifth day rolls around I’m surprisingly chipper, despite the tension humming away just below the surface. Aidan and I go grocery shopping and I buy salmon for dinner, a significant treat on our current budget, to celebrate what I confidently believe will be good news. I’m in our bedroom when the phone rings at five o’clock that afternoon. It’s the doctor who performed the CVS. I sit down on the edge of the bed. His first question startles me.