by Susan Biggar
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 h
appen 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.
Our marriage rebuilds itself in the same way, inch by inch and day by day. At times we get impatient and rush the process, but the wound begins to fill up, arguments bursting forth, forcing us to slow again. For several years our anniversary celebrations are awkward, tentative; two years in a row they end in bitter division. Reflecting on our marriage, something we have always done on our anniversary trips, is simply too raw and painful to attempt.
Yet eventually our love does heal.
And when it does it’s not only because of our kids. Not only because of the photo albums full of memories too rich to abandon. Not only because we don’t know what else to do or we don’t want to be alone. But because we realise our life is better together, all of it—the joy, grief, hope and fear. It’s a gradual deciding, conscious and unconscious, as we choose to move forward. Though incremental, we rekindle our relationship, like a once-fading fire stirring to life. Over the months that follow, we’re surprised to find that as the crisis passes and we begin reconstructing our relationship, it’s stronger and we’re stronger. Coming so close to the edge, to tossing in the whole thing, has changed us. Like survivors after a life-threatening accident, our near collapse inspires us to protect and appreciate our life together.
***
‘What about Ellis?’ our marriage counsellor, Chris, asks.
‘What do you mean? What about him?’ I ask in response.
‘How does he cope with having two brothers with CF?’
For me this is one of those horrid ‘Where did I leave the baby?’ bad-mother moments. Oh God, can it be that Ellis is six years old and I’ve never considered this? I thought people paid therapists to help them feel better; if so, maybe I need to pay Chris more.
‘I don’t know,’ I reply blankly.
‘It’s bound to have an impact on him,’ he continues ‘living with illness and an uncertain future for both of his brothers.’
I take a deep breath, trying to climb out of the pit of bad-mother loathing.
‘I guess Darryl and I know there are challenges for everyone in a family with illness—not only Ellis—and we’ll just tackle them together as they come along.’
I glance at Chris, who nods, encouraging me to continue.
‘Okay, so I’m sure our family life isn’t typical but it’s all we have ever known. Ellis has experienced enzymes, physio and hospitals his whole life. It’s who we are and it’s what he knows.’
‘Yes, but you need to keep in mind that it could be a pretty big thing for him further down the track.’
Yeah, thanks for that, Chris. He’s far too honest to let this one slide—no matter how much I pay him.
Of course I know he’s right. Things are pretty much cruising along as Aidan and Oliver have remained generally very well, somehow skirting around CF’s big punches. Yet as time goes by we may have to fight harder and harder to maintain this excellent health. It will be an issue for Ellis, for all of us. Can we—should we—prepare for that day? Or is it enough to live today the best that we can and face the difficulty when it comes?
A few weeks later Ellis develops a bad cold. I do what most pragmatic parents do when they don’t want to waste both time and money listening to a doctor say ‘It’s just a cold’: I wait it out. But after several days of miserableness, we visit our GP. While it may actually be ‘just a cold’, she is in a prescribing kind of mood and sends us out the door with a pat on the shoulder and a script for eye drops, nose drops and some antibiotics.
She might have handed my son two tickets to Disneyworld and an extra-large Hawaiian pizza, so great is his joy. For the next seven days our household hears daily dosage updates, obsessive drug monitoring and a running improvement report from this young child.
Personally I think a mild case of hypochondria isn’t a big price to pay and maybe that’s just going to be ‘normal’ for us.
***
‘Hi Susan, this is Georgina from Make-A-Wish—I’m calling to talk to you about Oliver’s wish.’
‘Oh, yes, hello. Do you have some news?’ I respond, stepping away from my computer and walking out into the warm morning sun.
We have been eagerly awaiting a decision as it has now been nearly a year since we first put in the kids’ applications. Aidan has made several attempts on a wish, but neither of his ideas has come to fruition yet. He is now working on another possibility that may involve meeting a world-class runner. But today it’s about Oliver’s wish to go to Machu Picchu.
‘So,’ Georgina continues, ‘I just received the forms from the hospital and, uh, apparently Oliver has been pretty unwell recently. How is he now?’ she
asks cautiously.
‘Much better. He has been fine since that episode, really good actually.’
‘Oh, I’m glad to hear that. So, um, unfortunately Oliver’s doctor wasn’t sure that Oliver would be recovered enough to do the trip. I’m afraid his wish has been turned down.’
I can’t believe it. Slowly lowering myself down, I perch on the low brick wall in the back garden as a mynah bird lands on the lawn in front of me. The conversation I will need to have with Oliver is crystallising in my head. It’s a painful image. It never occurred to me to prepare him for this; maybe my optimism will make things harder. But he has been so healthy up until this event and seems to have fully recovered.
After a long silence I finally speak. ‘Does Make-A-Wish have a policy against asking for the same wish twice?’
‘I’m not sure what you mean,’ she replies.
‘Could we wait until he’s completely recovered—and Sarath feels more confident about his health—and then try again?’
‘I don’t think that would be a problem. If this is really what Oliver wants then it’s a good idea.’
Months pass. Without further complications for Oliver and his lung function routinely registering 100%, we decide it’s time to try again. This time we sail through getting Sarath’s permission, but hit an unexpected snag. I am reading the detailed itinerary in an email from Georgina, including the specifics about train travel, when I realise the mistake. I ring her immediately.
‘Georgina, I don’t want to sound ungrateful because this itinerary looks amazing. It’s just, um, it’s not the wish that Oliver wanted.’
She sounds shocked. ‘What do you mean? His wish is to go to Machu Picchu, right?’
‘Of course. But he wants to GO there. Meaning, half the wish is getting there. He wants to hike the Inca Trail. He doesn’t want to take the train.’