The Upside of Down (30 page)

Darryl and I break across the sloping field, jogging awkwardly with handbag and briefcase, trying to grab a glimpse of the group on their next loop past us. Our eyes are fixed on the scrubby brown hillside ahead where the clump of runners has narrowed, stretching back across the course. We watch them in the distance as they snake around the orange cones at the crest of the hill, their school colours bleeding together.

As the boys begin their dash down the incline I can see what appears to be Aidan's creamy head among the leading group. At this point, I abandon all dignity and verbal control. Grabbing Darryl's arm, I holler over the wind.

‘Darryl, he's right there, near the front. Can you see him? Look! Oh, I can't believe it. Yes! GO AIDAN!'

‘Honey, I can see him. But the race isn't even half-over. Calm down.'

‘What do you mean “calm down”? Look at him—he's doing fantastic.' Given my husband's lukewarm response I'm tempted to explain our exciting news to the woman who's standing next to me. Except she's no longer there, but has moved down the hill, presumably searching out a quieter perch.

We jog to the next viewing spot alongside a small pod of other parents, all stooped and panting, desperate to catch our child's progress and cheer them past. We're the middle-aged pit crew; chock full of dicey knees and aching backs. Our tight viewing corner is chaotic, with parents jostling for position and all calling out at once. ‘Well done.' ‘Good job, Michael.' ‘Keep it up!' ‘He's right behind you, Sam.' ‘Go, go, go.'

Aidan looks strong and in control as he swings past us. No external signs of illness. Today his body is all fitness and vitality. Darryl points out several other boys in the lead group.

‘See those guys, the two in the purple shirts? They're getting tired. Watch their arms flapping around. And look how they've lost their stride.'

Before I have time to spot any flapping or properly analyse their technique, Darryl tugs hard on my sleeve. ‘Come on, we'll have to hurry to make it to the finish.' Sweating with exertion and anxiety, I trot after him. As the pack turns for the final leg, we spot a shortcut through the bushes and over a small muddy creek to beat them to the end. We are slogging up the mucky bank as the first runner pops over the rise, followed by a small pack. Then Aidan appears. He's pushing hard, struggling for breath, sucking in oxygen—but so is everyone else. Arms pumping in unison with his legs, we watch as he drops into a shallow gully and, pushing the balls of his feet firmly into the ground, heads for the finish.

Without taking my eyes off our son, I find and squeeze Darryl's hand tightly. This is a moment for us to share. Who knows where we'll be tomorrow. But today is not the future we feared more than a decade ago sitting with a doctor in New Zealand, barely able to comprehend his foreign language: a bewildering tangle of medical terms and bad news.

Seconds later Darryl and I cheer and hug as Aidan finishes fifth in his state cross-country race.

17

LIMITING COLLATERAL DAMAGE

My childhood house in San Anselmo, California sits about fifteen kilometres from the San Andreas Fault. This fault has produced some of the state's most significant earthquakes, including the 1906 San Francisco quake and the 1989 Loma Prieta in the Santa Cruz Mountains. As a kid, I heard rumours of cows swallowed whole by the fault, like some kind of Venus Flytrap, gaping open to catch them when the earth started to shake. People in the San Francisco Bay Area regularly spoke of when the ‘Big One' might hit and joked about whether California was likely to be cut adrift from the continent by it. Growing up on such shaky ground we had earthquake drills throughout primary school; they were a real treat, almost as good as ‘hot dog day'. The school bell would begin to screech and we'd all dive under our desks, including the teacher. Several minutes later the drill would close with stern reminders to keep away from windows and not run from buildings in a real earthquake, as many people are injured by broken glass and falling debris.

I was studying at Stanford when the big 1989 quake hit. At the moment it struck I was in the campus bookstore searching for the perfect birthday card for a friend. Despite years of school drills, when faced with my first life-size quake I did exactly what I had learned not to, what any sensible, petrified person would do: I burst out through the floor-to-ceiling glass front doors of the bookstore. Not only that, but I did so while yelling (thoughtfully, for the sake of anyone not raised in California) ‘Earthquake, this is an earthquake'. Although physically uninjured by the quake, I was emotionally ruined for several months. I not only found the aftershocks terrorising but my personal world became highly destabilised, as I constantly wondered if and when another, even bigger, quake would occur. Other people at Stanford seemed to slot quickly back into daily life so maybe it was just my psychological frailty that left me paralysed by fear and apprehension.

For our family, living with cystic fibrosis is like living smack on top of the San Andreas Fault. Aidan's initial diagnosis was the first monster quake, alerting us to the fact that we had set up camp in earthquake country. As the initial weeks and months of waiting for further quakes passed, we began to calm down, almost forgetting about the danger. Because the kids have remained generally well, we have experienced many weeks, months and even years without huge disturbances or reminders of the instability underfoot. There has been the occasional unexpected crisis throwing us into hospital and our lives into turmoil. But much of the time our kids go to school, we work, play and enjoy our lives. From the outside we look reasonably normal. There would be many acquaintances in our wider community who have no idea that underneath our family's little world the ground rumbles and shakes, occasionally shocking us with its force.

Of course, the challenge when living around something as alternately calm and terrible as an earthquake is to remain vigilant about making sure the house can withstand the shaking when it hits. Likewise for us, it means not only maintaining our discipline with treatments at home but also continuing to insist on the best possible care even when things seem to be going swimmingly.

So, it's in this period of particularly good health that I increase my commitment to working with the Family Advisory Council. The hospital sends me to a Patient and Family Centred Care conference in Calgary, Canada. Once in Calgary I find myself swamped by evidence supporting patient and family involvement. By chance, one of the presenters at the conference, who works at Children's Hospital of Philadelphia, is also a mother of a fifteen-yearold daughter with CF.

‘When my daughter was very young,' Juliette tells the audience of 500 delegates, ‘our hospital had a rule preventing siblings from visiting the wards. This meant that whenever our daughter was hospitalised her sister couldn't come and visit her. The only thing we could do was ride up in the elevator with our other daughter, wait for the doors to open, let them see each other for a moment and then ride the elevator back down. This was so painful for all of us that I vowed to change that one rule, to make that one piece of hospital life more palatable for our family. Eventually we did change it. This one issue is what got me started working in patient and family involvement in healthcare improvement.'

I furiously scribble down notes while listening to her many stories of small policy changes that had enormous repercussions for families. Hospitals don't set out to create policies that will make life difficult for families, but because they rarely have ‘hospital frequent fliers' on staff, they lack that unique patient and family insight at the table informing their decisions. Listening to Juliette's story, my mind flicks back through the complex mixture of hospital policies and processes that our family has found either inadequate or unhelpful. In New Zealand, the dearth of follow-up and support after diagnosis left us panicked and floundering at home with an undernourished new baby. In Paris, the ‘doctor knows best' medical culture grated on us terribly and the rigid approach to things like the
hopital du jour
program was completely unfriendly to patients and families. In San Francisco, we found it so hard when we weren't allowed to take Oliver out of the building, ever. Here in Melbourne, the lack of opportunity for feedback or input on clinical services has left us feeling powerless and frustrated.

Looking back, I'm convinced that all of the staff we have known were trying to provide safe, efficient care while trying to meet all of the other hospital criteria. It has never been an intentional excluding of us. But because there's not a tradition of including patients and families in policy decisions or putting them on committees, hospitals are often flying blind about how to blend quality and safety with patient and family satisfaction.

The conference in Calgary is not only inspirational, but a huge relief. Since beginning this work with families I have been suppressing a mounting fear that the partnership idea might turn out to be just ‘a nice thing to do' without evidence to sustain it. Thankfully my doubts are washed away by ever increasing research showing that care is safer and of a higher quality when meaningful partnership exists and where patients and families are actively involved. Evidence pops up in ICUs, neonatal units, during ward rounds and bedside handover.

Dr Lucien Leape, an American clinician and professor at Harvard School of Public Health, has been a worldwide leader in patient safety. Leape is a strong voice advocating for greater patient and family involvement at all levels of the system. He says, ‘If health is on the table, then the patient and family must be at the table, every table, now.'

The Family Advisory Council heeds this advice, asking for seats at many tables at our own hospital. Family members begin sitting on committees addressing discharge, transition, adolescent issues and the new hospital development. Together with another parent, I take a position on our Clinical Quality and Safety Committee where quality initiatives are celebrated and, probably more importantly, errors and tragedies reviewed. To all of these discussions, families bring a new and critically important voice.

Building on the work of the FAC, Cath and I find ourselves talking regularly about how to broaden our scope and link together the many like-minded people across the country already working to improve healthcare. Eventually we begin a monthly meeting at Cath's house. We meet around her dining room table for months until our need for a phone hook-up for twenty people scattered across Australia forces us to relocate to an office. The group begins with small research and clinical projects, encouraging a culture of engagement and partnership between staff, patients and families—with the aim of creating a safer, more patient and family-friendly system. After a year of meeting together, with passion and numbers increasing, an organisation—the Australian Institute for Patient and Family Centred Care—is born and a movement towards improved partnership in health is launched.

***

It has been several months since we received a letter offering Aidan and Oliver a ‘wish' with the charitable organisation Make-A-Wish. Initially neither Darryl nor I are excited about the idea, struggling with the concept of it being a ‘final wish'. We also feel that our kids have been healthier than many kids with CF and we're not sure they need it. But after speaking to others in the CF community who say it's meant to be viewed as an acknowledgement of the kids' hard work, a recognition of the challenge of living with a chronic illness, we reconsider. It is a challenge, there's no doubt about that. We eventually make peace with the idea and tell the boys about it.

‘I want to meet a famous person—probably an athlete,' Aidan says instantly, ‘I just have to decide who!'

Oliver also knows exactly what he wants to do. ‘I want to visit an archaeological site. Either Machu Picchu or Teotihuacán in Mexico.'

Although he's only ten years old, Oliver has an insatiable appetite for history and archaeology. His wish shapes up fairly quickly as he decides on Machu Picchu as his first choice and Make-A-Wish sets to work on trying to send the whole family to Peru.

***

‘You don't look very well, Oliver. Do you feel okay?'

‘Not really. I don't know what it is—I felt fine yesterday.'

He seemed fine yesterday too. I could quote Murphy and his annoying law which would say that ‘what it is' is that I'm walking out the door to the airport. ‘Mum is going away' is as much a trigger for illness in one's children as shooting them up with a dose of influenza.

Oliver is lying droopily on the couch, his head back, coughing. He's not even reading, instead he's just posed there lethargically, like a lazy life model; a very disturbing sign. Darryl, optimistically, continues to get ready for work.

‘I don't think he looks fit enough to go to school, Darryl,' I say, aware that even in the best of times parenting advice from a departing parent is never well-received.

And this is certainly not the best of times.

‘Yeah, I guess Oliver and I will have to work that out on our own,' Darryl replies robotically, steam rising from his head. We're smack in the middle of a miserable, running argument that has now stretched for weeks. In reality, it probably began six months earlier with a serious disagreement which was never properly resolved. This round began with a clash over responsibilities around the house and with the kids, but the current topic is almost irrelevant; the problem is that neither of us is willing to let go of our anger and sort out the issues. It's a sign of a deeper malaise.

‘Okay, I think it's time for us to go then. Uh, Ellis, say goodbye to Dad, Oliver and Aidan.' Ellis is accompanying me to New Zealand. I'm speaking at a CF conference and he is going to spend a couple of special days alone with Raewyn.

That night in New Zealand I hear nothing from Darryl and take the silence as a positive omen. The following day I'm out of the house all day and busy preparing for the conference while Ellis and Raewyn trek around Auckland sightseeing. When I arrive back at her house late that night there's a blunt message on the phone from Darryl.