The Upside of Down (31 page)

‘Hello Susan. Uh, I'm just calling to let you know that Oliver has been admitted to the Children's today. His oxygen saturations aren't good so he's on oxygen. I'm staying with him but am turning my phone off now for the night. I guess we can talk tomorrow.'

The next morning I miss Darryl at the hospital but am able to speak with Oliver's nurse who updates me on his condition.

‘I wasn't here last night but have just done handover with the night nurse and she said that he had a pretty good night, slept well and his oxygen saturations were stable.'

‘Oh great, he's off the oxygen then?' I ask, relief flooding in before she even finishes answering.

‘No, no, I just mean that we've been able to keep his saturations stable with the oxygen. He definitely still needs the oxygen right now.' This is worrying. Only once before has Oliver ever needed oxygen and then only briefly.

‘So, do you have any idea what the doctors are saying? Is it an infection? It just came on so suddenly …'

‘Look, I haven't spoken to the doctors yet. I think Darryl did yesterday though, so why don't you call him.'

In my desperation for information I fleetingly consider asking her to speak to my husband on my behalf. Thankfully a tiny voice of reason in my head prevents me from soliciting this poor non-marriage-counsellor-qualified nurse to play umpire in our strained relations. As it turns out when I try to phone him, he has had to go back to work for the day, is in meetings and unreachable.

The combination of Oliver's status and my sour relationship with Darryl weighs me down. Before leaving for the conference I go for a long walk, scratching around for emotional strength. Frantic to be reassured of Oliver's condition I'm very begging and moany as I pray, tossing up all manner of offers in exchange for some improvement. ‘Begging and moany' is pretty much
modus operandi
with God lately, like a teenager incessantly in need of money or the car keys. After my walk, I shower, paint on a happy face and head off to the conference to give an upbeat talk on ‘Travelling well with CF'.

By the time I return from the conference that evening it's late and, once again, Darryl has turned his phone off for the night. Instead, I speak to one of Oliver's nurses. She informs me that he's stable. No real improvement but, thankfully, no decline. She doesn't know what the plan is for the admission, but she's certain that Oliver won't be healthy enough to go home for some time.

I need to get back to Melbourne.

The following morning I give my second and final talk; the topic is patient and family centred care. My presentation is stilted and uninspiring with my passion for everything but Oliver's welfare rapidly wilting. I must get home. Immediately after finishing, I phone Darryl, finally reaching him.

‘What's going on? How's Oliver?'

‘He's about the same really,' he answers in a thin, distant voice, the kind I use with the telemarketer who calls in the middle of dinner.

‘Look, I know we're not doing great together, but can we just put that aside for now please? I need to know what's going on and what I should do.'

‘Okay,' he replies in a stiff tone.

‘What is the medical team saying about him?'

‘They suspect it could be ABPA because he's wheezing badly, is having trouble breathing and, at this point anyway, he hasn't grown any nasty bacteria. Though they're giving him IV antibiotics just in case.' ABPA is an acronym for allergic bronchopulmonary aspergillosis and describes an allergic reaction to a fungus that can grow in the lungs. Oliver has grown aspergillus before but never had this kind of reaction to it.

‘What should I do? I just finished my last talk. Do you think I should try to get a flight back this afternoon?' Ellis and I are due to stay in Auckland another two days.

‘Yes,' he says without hesitation.

‘Okay. I'll let you know when we're coming.'

At eight o'clock that night Ellis and I are stepping out of a taxi at the entrance to the hospital. We sprint to the elevator.

‘Hi Mum!' Oliver yells through his oxygen mask, waving from his bed. As I lean down to give him a hug, I'm a messy mixture of relief and fear. Grateful to be finally with him, but aware of the work we have ahead of us to get him back in good shape.

Two days later Oliver is able to be eased off the oxygen. The next afternoon we take him for a lung function test. According to the nurses and Darryl, his breathing has improved significantly and yet he's still only able to blow fifty per cent of normal. His breathing may be improving but his poor result leaves me hyperventilating.
Deep breath, relax, pray, deep breath, relax, pray
. I bring my running shoes from home and begin setting my alarm for early sessions around the nearby park, knowing I need to get my head and heart together.

Oliver is in a phase where he loves receiving cards, so we put the word out to friends and family and within days the walls of his room are plastered with over eighty cards from around the world, many from the staff at my sister Ann's hospital in California. By this time Darryl and I have scrounged up enough maturity to begin speaking and acting more kindly towards one another—losing the snappy tone and unforgiving demands—especially in front of the kids. And we make a particular effort to keep an eye on Aidan and Ellis, who can easily feel brushed aside and forgotten by the all-consuming nature of the hospital. All five of us pile on Oliver's hospital bed to watch
Top Gear
or go AWOL from the ward for a family dinner at the local pizza place in an attempt to blot out the overwhelming presence of illness.

It's during this time that I overhear a conversation between Ellis and a young family friend in our kitchen.

‘Why does Oliver have to stay in the hospital?' asks Luke.

‘Oh, he and Aidan have this thing, kind of like a disease, called CF,' Ellis answers.

‘What does it do to them?'

‘Oh, nothing really. It doesn't really make them sick. They're just normal. But sometimes—I don't know why—Oliver has to stay in the hospital for a few days. It's okay,' he adds, shrugging his shoulders.

Relief runs over me as Ellis and Luke rush past, heading down the hall. Maybe Ellis has a total absence of observational skills or has inherited the denial gene from me but despite the chaos, disruption and absurd abnormality we experience at times, he still views our lives as ‘okay'.

After a week in the hospital I go to school and meet with Oliver's teachers. There's a nationwide online maths competition taking place the following day and Oliver had planned on participating. His teacher suggests that he do it alone from the hospital despite the fact that the others will be competing in teams of four. He loves maths but isn't confident about competing alone or from the hospital. Once he gets started on the test I head off down the hall to the parents' kitchen on the ward to wash up my dishes. When I return ten minutes later he's frantic.

‘Mum, where have you been? I have been finished for ages and don't know how to submit my test—and the time really matters!'

‘Oh, I'm sorry. I didn't realise. Let's see if we can figure out what to do,' I reply. Within a minute or so we work out how to submit the answers and he begins to calm down, though for the rest of the week he worries about his result. Meanwhile, Oliver's medication and treatments are obviously working as he is quickly returning to his normal form, laughing, reading, asking for afternoon trips off the ward and around the city centre. We visit the aquarium, the Queen Victoria Market and Darryl's office.

In an effort to maintain some normalcy—whatever that is—we are allowed to move the treatments back to home, Darryl and I partnering with a team of nurses to administer his drugs. We're so grateful to have him out of the hospital, though the hospital-in-the-home gig is never without complications. Just before leaving the ward I double-check instructions with the medical registrar.

‘So, what can he do at school while the IV is in? I mean, are there things he really shouldn't do?' Oliver's going home with the IV line still in his arm. He has a small, baby bottle-sized plastic jar attached to the line with a slowly-pumping antibiotic inside. His arm is wrapped up tightly with only some tubing leading into his pocket where he has already stashed the baby bottle.

‘Oh, don't worry about it really. These things are very tough. I don't think he'll have a problem,' he replies.

An hour later I drop Oliver at school. After more than a week in the hospital, he's overjoyed to be getting back to a routine. His teacher greets him with enthusiasm, though eyes the IV tubing somewhat apprehensively.

‘Is there anything he can't do?' he asks.

‘I don't think so. The doctor didn't seem at all worried.'

‘Okay then, fine.'

Less than two hours later, I get a call from school: ‘Susan, please come quickly—there's blood everywhere!'

By the time I arrive at the sick bay, Oliver's sitting calmly holding a blood-splattered arm.

‘What happened, honey?' I ask.

‘Um, we were playing soccer—'

‘Soccer?' I interrupt.

‘Yes. It was all going fine until I got hit in the arm with the ball. That must have jiggled the IV loose a bit, but it didn't bleed or anything.'

‘Yeah, so then …?'

‘We kept playing but then the tubing from the IV somehow got all tangled up with Pierre who was trying to get the ball and … Well, you know, it got kind of bloody.'

‘I can see that.'

Luckily, the same registrar is still on duty when we return to the hospital and he has Oliver patched up and back at school before the day is over. By the end of the second week Oliver performs another lung function, this time blowing 101%.

A few weeks later the results of the maths competition are announced at the school assembly. Oliver is called up to the front. He has won the school-wide competition and finished third in all of Australia.

18

A GOOD LIFE

Any post-crisis mop-up takes time and can have a tendency to linger on as enthusiasm wanes. Once Oliver is home from the hospital and much improved, Darryl and I slowly begin to acknowledge the tricky place we have come to in our marriage.

I don't know if it happens to everyone or even most people in a long-term relationship, but it has happened to us. After so many years, the glue is beginning to dry out and the whole thing seems to be coming unstuck. It didn't happen overnight or even over a year. And there wasn't just one trigger—no affair or money worries or the kids getting particularly sicker—setting the whole thing aflame. Undoubtedly the added medical worries and our varying responses to that stress take their toll on us, both as individuals and as a couple. But can we blame it all on that? It's hard to know.

What I can see is that it has been a gradual slide into disappointment and frustration. Looking back, I know that our frequent moves, combined with our kids' unique issues, have made it nearly impossible for me to pursue a career. I have never felt that Darryl has understood the depth of that loss for me, leaving a rich source of resentment, festering like an open wound. We have also butted heads repeatedly with our different emotional make-up, him feeling that I'm unpredictable and me finding him wooden and insensitive. But every couple must have some ‘issues'; are ours truly irreconcilable?

It's clear that the difficulties are not just melting away with a quick kiss-and-make-up. Instead, they linger in the core of our lives, permeating everything, the way salt seeps into food. The two of us have been trying to muddle on with our daily routine of work, shopping, cleaning, kids, driving, negotiating, organising. We find some of the tasks manageable with the tension and others nearly impossible, like trying to run a marathon while dragging your two-seater couch behind you—potentially doable with determination, but not the most pleasant or rewarding approach.

While back in California on a recent trip I had discussed my discouragement about our marriage with my friend Suzi.

‘Is this how marriage is meant to be—an emotional seesaw? Right now I'm so tired of it.'

‘I don't know. It hasn't really been for us, but I know other people who have found it consistently hard for years,' she says.

‘But we've had so many really happy years together. It's just lately …' I reply, trailing off.

‘You guys have so much stress in your lives with all that your kids are facing and all of that uncertainty. You have more stress than anyone I know.'

‘Maybe. I just wonder sometimes if we still love each other after everything.'

When my older sister Carolyn is killed in a car crash in Canada both Darryl and I are left deeply shaken, acutely aware of the fragility of life and the importance of not wasting it. Our relationship, this complicated work of time and effort, seems more evidently a treasure to be respected and valued. Looking at all that lies ahead of us, the stress and uncertainty of a future with CF, we know we don't want to face it alone. And we know our kids need us working as a team to give them the best chance. We need to figure out how to do this together.

Our patching up is slow, requiring counselling and time. Then more time. The process reminds me of something that happened about a month after Oliver was born. Unexpectedly I had developed a haematoma, a big sack of blood, in my abdomen. I needed surgery to drain it. However, the tricky thing about haematomas is that if you sew them straight up, the sack tends to refill with blood. So the surgeon had packed the wound with gauze and left it open. For six weeks a nurse came to my house daily; the gauze would be unpacked and a ruler placed deep in the hole to measure the progress. Initially the ruler seemed to almost disappear inside the yawning hole in my stomach, but slowly it became shallower and shallower until finally, one day, the very last layer of skin mended itself and the wound closed up.