The Upside of Down (8 page)

But the personality traits are the same: stubbornness and non-stop energy. He's like Robert Mugabe on Red Bull. He still walks all wobbly, a sort of John Wayne bow-legged swagger, yet is desperate to vacuum the house. We play tug-of-war with the vacuum until I finally relent. Within a few days he has cracked himself in the skull with the metal pipe, prompting an impressive egg to pop out of his forehead. There's a pattern emerging with this child. I can only hope his stubbornness helps him to push through the trials he may face in the future.

***

We have now been in Wellington more than two years and involved with a small church community for most of that time. The denomination is not one we previously associated ourselves with; in fact, the first Sunday when we pulled up on Darryl's motorbike in front of the squat 1950s building with its brutally ugly facade I nearly told him to drive away. This was not my scene. But both Darryl and I were drawn in by Gavin.

A tall, athletic and ruddy fifty-year-old, he is not a typical church pastor. He's known for riding an antique Indian motorbike and dropping home-grown cabbage and silver beet in the mailboxes of friends around Island Bay. An intellectual with a deep faith, he thrives on meaty debate and inquiry, often responding to questions with questions, rather than pre-packaged establishment answers.

During our first year in New Zealand, Gavin and his wife Jenny had become dear, trusted friends. An avid cyclist, Gavin asked Darryl to join him on a hundred-mile bike ride around Lake Taupo in the middle of the North Island. They spent hours training, often followed by theological or philosophical discussions, thriving on the physical and intellectual workout. After Aidan was diagnosed, Gavin and Jenny were by our side, supportive, kind, unfazed by expressions of anger at the Almighty.

Early one Saturday morning, a few months after Aidan's birth, we had been awoken by a phone call.

‘Susan, is that you? It's Keith Taylor.' Keith is a friend and lay leader in the church.

‘Oh, hi Keith. Uh, what time is it?'

‘Yeah, sorry to wake you. I know it's early.'

‘That's okay. What's up?'

‘Look, I'm really sorry to have to tell you this, but Gavin … he died last night.'

‘What? That's not possible.' His words were totally implausible; he might just as well have said he spent the night on Pluto.

‘I'm sorry, but it's true.'

‘Keith, we just saw him. In fact, we were with him last night and he was fine.'

‘I know …'

‘What happened?'

‘We think it was a heart attack. He and Jenny were in bed, she woke up and called the ambulance but it was too late.' Darryl was awake by this time, listening, shocked and crying.

‘How's Jenny? What can we do?'

‘She's okay. Trying to contact all the family right now. But she's having a problem with her email. Maybe Darryl could go around and see if he can get it sorted.'

‘Sure. That's fine … Okay, thanks for letting us know, Keith.'

The entire community was devastated by this loss, especially for Jenny and the kids. In the weeks and months that followed, Darryl and I struggled to keep our emotional and theological footing without Gavin's steady hand. The church forged on, leaderless, with Keith trying to tend the wounded. Without Gavin, we began to wonder if this church would continue to fit us. But I was committed to working with the young people and thrived on those relationships, so we stayed.

***

Nearly a year has now passed since Gavin's death. During the eleven-week waiting period before our CVS we were optimistic and relatively open about our pregnancy, telling several friends from church. Immediately after the abortion, word passes through the church community amongst the People Who Care about these things. All of them seem to view this as a black-and-white issue and, not surprisingly, we're on the black side.

The first letters arrive within a few days of our return from hospital.

Dear Susan,

My heart goes out to both of you and to your child … I will continue to support you and Aidan, but I still believe every life is of value and every child is precious even if they're less than perfect. I believe the taking of a child's life is wrong no matter how young they are or how imperfect … I feel a deep sense of grief for your child and its lack of chance at life
.

Dear Susan,

I want to affirm you and support you in every way I can. I treasure Aidan as one of God's children … How could you kill Aidan's brother or sister? I feel in my heart as though you have killed Aidan
…

Others tell us face-to-face that this is a mistake we will regret. They will never know the weight we already carry, the worry and the struggle to give our child the best. Even if they did, it's unlikely it would sway them. We are visited by members of the leadership team. They ask me to give up my involvement with the youth and they communicate the message ‘some people are upset by your decision'.

Oh really, I hadn't noticed.

Darryl had felt it was important that we were open about our decision. He naively assumed there would be room in this community for a thoughtful discussion about a complicated issue. He was wrong. But he takes the heat of the unexpected barrage better than I do. (Having said that, they're all writing exclusively to
me
and not him.) I write livid replies in my mind lying awake at night, the anger burning through my already strained psyche. By morning Darryl convinces me to rip the imaginary letters to shreds, reclaiming the fragments of my peace of mind and letting the fury go. He's right, I know he is. I don't have the strength to fight battles with them. I have to protect myself and my family.

My sister Ann phones from California.

‘Remember you're the only one who has to live with this. No one else is in your shoes. Nobody else matters right now.'

I burn her words into my brain.

The weekend after the problems erupt, a carload of Darryl's friends from Auckland trek eight hours south to the capital to help us paint our house. The men are kind and sensitive though at a loss to know how to respond. So, instead of talking, we paint. It's a creamy white for the weatherboards, deep green for the windows and crimson red for bits of trim. The days are focused and task-oriented, ‘Can I borrow the sander?' ‘Are you done with the ladder?' ‘Watch out for the bucket!' The generosity of their presence—their paint-flecked T-shirts, gritty sweat and aching triceps—is therapeutic for Darryl and me.

Early the following week, on the heels of the letters, the phone calls begin. These people are more oblique than the letter writers, not so overtly damning. The calls generally follow a similar pattern. ‘How are you doing? This must have been a very difficult time. But I have to tell you that I disagree with your decision …'

Why do they have to tell me? I really don't need a running tally as I realise that my approval ratings are probably at an all-time low. It seems people have a need to express their disapproval, get it off their chest, clear their conscience, as though they have been tainted by our actions, their theology muddied by our transgression. Is that their motivation? No matter how hard they push, we can't change our minds and undo the whole thing, like dashing back into
Tiffany's
to return a ridiculously impulsive purchase.

One woman is initially very supportive, offering her daughter's babysitting services and baking us a cake. However, a few days later, presumably after conversations with others, she does an about-face on the ethics of abortion (and compassion). These are people who I knew well, even considered some as friends. No matter how hard I try to move on, their rejection is painful. Layers of confidence and optimism peel away, leaving a vulnerable core exposed. The most personal and painful decision we have ever faced has been placed on the table for dissection and discussion.

I stop answering the phone.

Thankfully, my greatest fear—that God might somehow abandon me—has not come true. I am sustained by an enduring love, one I can't describe or understand exactly. With it, I can almost push past the judgment of others.

About this time the other half of the church steps up. They leave flowers on the doorstep, drop meals by unexpectedly and make offers of babysitting help. They send letters of a different nature.

Dear Susan & Darryl,

Just to say that you are not without friends within the church. We want you to know that we are really saddened at the lack of compassion towards you
.

Even our little church is not in agreement about this issue or at least about a compassionate response to us. Keith, who has a family and a demanding career, is also tasked with trying to bring about some reconciliation. He meets with us, sharing our pain and stating his disappointment at the way views have been expressed.

Several weeks later one of the elderly women from church, Alyson, calls me.

‘Susan, I have just heard about what happened.'

‘Yes …' I am hesitant, anticipating her disapproval.

‘I'm so sorry for you. I just wanted to see how you are doing.'

‘I'm okay, getting better. It has been a really difficult time for us.'

‘I'm sure it has been.'

I can't figure out where she's going so decide to head her off at the pass.

‘Look, Alyson, I'm sorry if you don't agree with our decision. While it was tremendously difficult to make, we don't regret it and I am not going to apologise—if that's why you're calling.'

‘No, not at all. I'm sorry if others have put you in that position.'

‘They have …'

‘I guess in theory I'm opposed to the idea of abortion …'

Uh oh, here it comes, I think to myself, letting her continue.

‘But in practice, theory isn't always realistic. To be honest, I think you've done what many of us would have done in your situation.'

Her willingness to acknowledge the complexity of it, to accept that there may be no good or easy choice in this situation sweeps over me the way the first warm breeze of spring cracks through the chill of winter.

‘Anyway, I just wanted to let you know that I'm concerned for you … please let me know if there's anything I can do to help.'

Help? I briefly wonder if she would consider some well-orchestrated revenge. It hardly seems likely for this gentle 80-year-old woman. And not terribly turn-the-other-cheeklike of me.

We will need to reflect on these gestures, these small reminders of kindness and empathy in the weeks and months to come. Because some of the People Who Care about this issue will go even further, presumably fuelled by anger that we're somehow getting off too easily, hoping to settle scores for God. One of them will phone Steve, my boss in Auckland, head of the aid agency I work for now. Of course I will not lose my job (I have already told him). Instead Steve will be disturbed by the call, offering any support he can give. Others will ignore me in the parking lot of the supermarket, on the street, at the GP's, as though this cold shoulder will somehow punish the unpunished. In fact, the technique backfires—after a raft of unpleasant conversations, I'm happy to be ignored, begging for a return to anonymity.

Somehow we persist in attending Sunday services for several months. I'm about as keen to walk through those doors as to undergo a weekly colonoscopy. But, Darryl reminds me, ‘It's still our community and we have nothing to hide.' Hiding is not an option: it's like parting the Red Sea when we enter, with people sliding briskly from our sinful wake.

As the months pass, the church continues to be torn over the issue. Several outspoken members lead the uproar against us. Mediators are brought in to try to bring about resolution. At the next annual general meeting most of the existing church council is replaced by candidates who promise to take a far stronger line on the issue of abortion. Several people stand by our side throughout the process, including Keith. But, despite their support, staying at the church has now become untenable, or at least unpalatable, for us.

Maybe I should have predicted this
Scarlet Letter
affair. During those decision-making days I did wonder about the disapproval of others, but it was—and had to be—totally irrelevant to the wretched decision we had to make.

5

MOVING ON

This illness ricochets between inconsequential and overwhelming.

After more than fifteen months of steady growth Aidan is a stocky little bullet of a boy and pretty ‘normal'. One day I find him rubbing nappy cream all over his hair—about as easy as axle grease to wash out—and the next he's dropping the kitchen timer into the toilet bowl. At the pharmacy he pulls a bottle of shampoo off the shelf and pours it on the floor in the time it takes me to turn my back and speak to the pharmacist. He's like any other toddler with no obvious illness or disability. Overtly, he's dripping normality.

However, underneath the surface lies a layer of abnormality. Aidan takes enzymes with every meal, about 20 – 30 per day, depending on what he eats. Because he can't yet swallow tablets we are still forced to continue the highly inefficient applesauce routine. He's also dosed-up daily on antibiotics and vitamins. In fact, he has consumed far more antibiotics in his first year of life than I have taken in my entire thirty-three years.

And then there's the daily chest physiotherapy, my biggest battleground. This is the place where my child's latent stubbornness emerges. Generally, physio takes about twenty minutes if he cooperates, two days if he doesn't. Darryl and I still use the method called clapping or percussion which involves patting his chest, sides and back very firmly with cupped hands. The aim is to shake up and release any mucus in the lungs, allowing him to cough it up, like whacking a tomato sauce bottle, tipping it upside down to get the last dregs out. Because people with CF tend to have thicker mucus, it may be gluey and hard to cough out. If it remains in the lungs it becomes a haven for bacteria and plugs the airways.