The Upside of Down (32 page)

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.'

I continue. ‘Look, I know it sounds crazy, but it's what he wants and we think it's a fantastic wish. Part of it is his believing that he can do something this tough—it's a great physical goal for the whole family. The other thing is that the hike goes past a number of stunning archaeological ruins which he doesn't want to miss.' Somehow this fundamental detail had managed to slip through our many conversations, probably because I always assumed we would hike and she never contemplated that as a possibility.

After another moment's silence, Georgina begins listing some quite reasonable obstacles to our plan. ‘We only got approval from the board and the insurers for him to take the train, not to hike there. Then we have the issue of the doctor again—.'

‘That's okay,' I interrupt her. ‘We don't mind waiting if you're willing to go back to them again. I'm really sorry, but since we have already waited this long, we can wait a bit longer to get it right for him.'

‘I'll see what they say, but I can't promise anything.'

***

Meanwhile, the monthly CF support group that we started in a cafe several years earlier continues to meet. We all watch helplessly as our friend Jon's health declines, first forcing him to lower his activity level and quit the soccer team he loves, then stopping work, finally attending our get-togethers with an oxygen tank wheeling behind him. His partner Jane is ever-faithful and hugely in love with him, though undone with worry. In the midst of this trying period, Jon proposes to Jane. Their wedding is a poignant celebration of love and commitment and the first time I've ever known ‘in sickness and in health' to be more than just an optimistic promise.

The day after they wed Jon joins the queue for a lung transplant. I'm impressed by Jane's strength and interested in how she copes with being thrown straight into the fire of full-on illness. One day over lunch I ask her about it.

‘In the beginning, when you had just started the relationship with Jon, did you think “What am I doing in this? He has got a really serious illness”?'

‘The first Christmas after I met him—before we were even dating—I went home and told my mum and sister that I had met someone. But then I said something like “But I would never get into a relationship with him because he might die. Why would I put myself through something like that?”'

‘Really? So what changed your mind?'

‘Both my mum and sister said right away “I can't believe you're saying that, Jane. It doesn't mean you couldn't have a great relationship with him—and a great life together. Why are you thinking like that?” From that moment I began to look at it differently; it really changed my view about the potential for a relationship.'

‘Have you ever doubted it since then?' I'm embarrassed to ask the question, but knowing what a living hell they have been through the past few years a little doubt along the way wouldn't be surprising.

‘You know, I haven't. To me, CF was always part of who Jon was. So once I chose to be in a relationship with him, then I chose to be in a relationship with someone with CF. We'd just deal with whatever came along.'

Jon had been told that, due to his particular blood type and physical size, his wait for suitable lungs might not be long. Thankfully it isn't. Eleven short weeks after joining the transplant list, our group cheers as he receives a double-lung transplant, not only dropping the oxygen tank but swimming the first leg of a triathlon just months later.

While the support group continues to share tips and personal stories, we also begin comparing notes on our healthcare experiences—what works and what doesn't, what will probably never change and what we might just begin to influence. Angela, whose teenage son is cared for at our hospital, becomes an absolute dog with a bone on the issue of physiotherapy support for patients who are having IV treatments at home. She makes phone calls, sends emails and has multiple corridor conversations, refusing to let the problem out of her sight. When a part-time designated physio is finally hired it sends out waves of encouragement to others, echoing that change is always possible.

***

I find that some aspects of ageing hit completely without warning. Like the noticeable gravitational pull on various body parts and the disintegration of your teeth. Or the fact that just as you're vainly trying to mentally adjust to this crumbling body, if you have children they will likely be entering that murky space I call
teenageitude
. Once there, they'll challenge you in all sorts of innovative ways. For one, they'll want more freedom. Most of the time, you'll want to give them this freedom.

Most of the time.

The problem with my adolescents is that they don't just want to have freedom to choose between Asics or Nike, hockey or soccer, Apple or Android. No, they also want to take control of their health. As in, ‘I don't think I'll have time to do my nebulisers this month.' Or ‘I'm too busy at school to eat lunch this semester.'

This is too much for me.

Yes, Darryl and I have always wanted them to be in charge of keeping themselves well, preparing them for that the way other parents prep their kids to take over the family metalworking business. When they are ready. Really ready. But how do we hand over the keys to someone who is possibly not yet a safe pair of hands? After all, we're the ones who have read the medical textbooks, studied websites and attended the conferences. We have also paid close attention during years of incalculable medical appointments, rather than burying our face in a
Harry Potter
. We understand this illness, we know the kids' medical history better than we know our own and we care passionately about the outcome.

My friends tell me that their adolescents are begging for independence and the freedom to make their own decisions, so ours are perfectly normal in that regard. All the books on raising successful teens seem to say ‘let them go, let them fail, it's the only way they'll learn.' This may work when it comes to choosing to do woodwork over calculus or even when dating the clingy and paranoid 16-year-old girl from down the street. But what about when the health stakes are high? To me, it's a dicey line between encouraging their responsibility and my own parental irresponsibility.

One thing that probably appeals to Aidan and Oliver about independence is the absence of my nagging, for years a constant clanging in their ears akin to chronic tinnitus. But this is a challenge for me. The reality is that nagging seems to be cemented into my job description. Now, it's not as though I like this or haven't attempted to give it up; I'm continually coming up with schemes to increase their responsibility—and decrease my own.

One Saturday morning I say to both of them, ‘Okay, I'm not going to remind you about your enzymes today. At all. Not even once. DID YOU HEAR ME?' Yet by ten o'clock they have each consumed about half a kilo of bacon without a single enzyme passing between their lips. From behind the newspaper I casually slide the tablets across the table with the ridiculous hope that this will trigger their memory without revealing my own failure. Five minutes later neither of them has so much as sniffed the bottle in front of them and I end up growling, ‘Take your enzymes NOW!' before storming out of the room.

Lately I have been trying a new tack. After fourteen years of carrying enzymes in my handbag, stashing them in the car and practically sewing spares into my underpants to make sure we were never caught empty-handed, I'm going cold turkey.