The Upside of Down (7 page)

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.

‘Are you home alone?'

‘Yes. Um, no, Aidan's here too. Why?'

‘Will your husband be home soon?'

‘Yes …'

‘Okay then, so I'm just calling to let you know the results of your CVS.'

‘Yes …'

‘So … uh … it turns out the foetus is affected by the condition.'

I am briefly struck by his choice of words—‘condition'. Maybe it's some other condition he's talking about, some other baby, some other life. I can think of nothing, literally nothing, to say during our conversation, not even a single question. Brick walls are emerging around me, leaving nowhere to turn. He talks briefly about options and, I think, says he'll call us in a few days to check in.

I hang up the phone but then don't know what to do. I can't face Aidan yet. What can I face? The wallpaper in our bedroom jumps out at me with its glaring floral pattern and slightly raised dusky pink swirls. I slowly reach out and run my fingers along it. I have always disliked this wallpaper but never gotten around to changing it. Yet it is terribly wrong all of a sudden, especially that raised texture, prancing around my walls as though it's escaping from the ugly 1970s.

It's probably only five minutes before Darryl arrives home from work. He finds me still sitting on the edge of the bed next to the phone with tear-streaked cheeks, trying to determine the best way to remove the wallpaper. Scraper? Fingernails? I'm so engrossed in these thoughts that I have forgotten about Aidan. I haven't heard anything from him so he's either playing nicely where I left him or re-painting the living room with glue sticks and glitter.

‘The doctor called,' I say without looking at Darryl. He comes over immediately, sitting down beside me. Looking at me, he knows. I don't need to say anything more. But I continue anyway, speaking rapidly, as though tossing the news formally to him might relieve some of the weight pressing in, clouding my eyes, wringing the life from me. ‘The baby has CF.'

We sit, mutely, like survivors of a shipwreck assessing the damage.

A few minutes later Aidan begins to grumble in the other room, probably because it's about dinnertime and his tank is empty. I'm unable to face the salmon that night or the next and in the end chuck it out.

The next few days we think and talk of nothing else. How can we worry about paying the phone bill, choosing between Cheerios and Sultana Bran, or discussing national politics (normally a favourite subject) when this profound decision is resting so squarely on us, squashing everything else that once mattered?

We search everywhere for wisdom and direction: the internet, close friends and family, the Bible; we'd probably try fortune cookies if we thought they would bring clarity. For all of the thinking, reading, talking, praying, searching we do, it still feels like a grey and miserably difficult decision. We are overwhelmed by the idea of a potentially dismal future for our baby, fighting this still-terrifying illness; the idea of going through the whole journey of this illness twice feels like more than we can bear.

Several days later we make the only decision we can manage right now: to terminate the pregnancy. We are in agreement, but devastated by it. The whole process has felt anything but clear-cut.

The day we return from the hospital, Kevin comes over to be with us. Talitha, our teenage babysitter, is generous with offers to take Aidan in the days that follow. Both of our families are distressed, but unequivocally supportive. We are fragile, so fragile.

Aidan is the light that pulls us through this dark period. He is walking and squawking and generally being a delight. Having undergone a radical transformation in recent months, he is now a burly toddler with fluffy strawberry blond hair. In fact, he's such a far cry from the super scrawny bald baby he once was that I wonder if people will think I have pulled a little swaperoo at mothers group.