The Upside of Down (29 page)

‘How do you think the group's going?' Darryl asks me one night on my return.

‘It's great, though it's not really what I thought it would be.'

‘What do you mean?'

‘It's just that I'm not sure we'll ever end up changing policies at the hospital or government level,' I answer while hanging up my coat.

‘Why not?'

‘For most people it's all they can manage just turning up once a month. They have so little leftover for changing the system.'

‘I'm not surprised.'

‘I know. After knowing their stories I'm not either. Living with illness sucks the energy out of people, it just sucks them dry.'

***

Aidan's fantastic finish at the district cross-country the year before inspires Darryl and me to try to continue developing the passion for running in the kids. After a slow recovery, Darryl's Achilles has improved enough that he's able to join the family on evening runs. Eventually we decide we need a goal and so register everyone but Ellis to do the 15km
Run for the Kids
, a race which raises money for our own hospital in Melbourne. For Aidan and Oliver, aged ten and eight, this will be the longest run of their lives. For Darryl and me, both aged forty-something, this will be a serious challenge.

For about twelve weeks we all train together, running most evenings with Ellis burning along on his bike. Despite so much practice my speed is still embarrassingly slow and I consistently lag two metres behind our little pack while sporting an oddly uncoordinated gait. The kids egg me on during our runs, especially cheering through one particularly long and taxing neighbourhood hill. It's late summer, the days stretch on and the sun is often still blazing in the early evenings. Sometimes we return home and flop down together in a sweaty and sloppy pile on the lawn to recover. Other evenings the run ends at the local swimming pool, rewarding our hard work with a wet game of Marco-Polo followed by fish and chips.

When the race day finally arrives we take the train into the city to meet up with friends. Ellis will be doing the five kilometre course with a friend and her children; they head off to their starting line. We have agreed that Darryl and Aidan will try to run together and Oliver and I will hope to do the same, though none of us know how difficult that will be with more than 30,000 runners signed up. We are encircled by thousands of bodies—most very fit-looking and sporting more Nike and Asics logos than I have ever seen in one place. Lean men glance at their digital watches, pushing buttons while other runners do lunging stretches and massage tight calves. It's a cool April morning, perfect temperature for running.

Within a moment of the gun sounding, Darryl and Aidan slip into the distance, disappearing like pickpockets in a crowd. They're tough and determined, running hard and completing the course in just over an hour. Quite a bit further back, Oliver and I plod on, through the long tunnel which passes under the city then over the Bolte Bridge spanning the mouth of Melbourne's Yarra River. We pass cheering supporters, towards the end we hold hands for more than a kilometre, him battling against tears, me attempting to ignore my screaming leg muscles. With only a kilometre left in the race I am completely spent.

‘Oliver, I've got to walk for a while. I'm sorry. I just can't run anymore,' I say.

The crowds are lining the edge of the race here, watching, but I have long ago abandoned all pride; that was pretty much discarded when I pulled the Lycra running shorts over my no-longer-young backside. At this point in the race Oliver, however, would be humming the ‘Rocky' theme song, if he was old enough to know it, as he can practically taste the finish.

‘Come on, Mum, we're almost there. We can't walk now.'

This is unexpected—and completely unfair. My young son is a pillar of strength while I'm ready to abandon our principles of hard work and dedication in the face of an onslaught of pain in the quadriceps. Then, just to add insult to my personal pain, the crowd around us takes notice of Oliver's young age and of our tussle. Naturally they jump in on his side, cheering him on with cries of ‘You're almost there' and ‘Keep running'. I even hear someone yell, ‘Well done, kid!'

In the end, he gives up negotiating with me and streaks for the finish. As a mother faced with the prospect of losing my boy in a crowd of thousands, with no back-up meeting place, I have no choice but to run. I focus my eyes on the back of that small brown bobbing head, desperate not to lose sight of him as he passes under the huge and oh-so-welcome ‘Finish' banner. As I cross the line I nearly tackle Oliver, hugging him, tears of pain and triumph splattering down on his head as I clutch him to my chest.

***

In the midst of this delicious period of excellent health for the boys, I have a fortuitous meeting with the mother of one of Aidan's new friends. Dr Cath Crock is a physician at our hospital, performing lumbar punctures and bone marrow procedures on cancer patients. She's also a mother of five and her youngest son is at Aidan's school. By the time I meet her, Cath has spent more than a decade working closely with families to improve the quality of care and services. From the first time we meet at my house, when she's picking up her son, we both recognise a kindred spirit.

‘I have found over the years that families have so much to offer the hospital and plenty of good ideas,' Cath explains.

‘They would, because they have firsthand experience.'

‘Exactly. Plus, they have plenty of time—in the waiting room and on the ward—to think about better ways of doing things.'

‘Unfortunately, that's true. Wouldn't we love to change the waiting!'

‘So,' she continues, ‘one dad had an idea about that. He said, “We find it so hard waiting, usually it's at least a couple of hours. Our daughter gets restless and we need some space. Why can't you give us a pager and page us when it's our turn for treatment?” So we got a hundred pagers donated and now the families can go to the cafe or the playground or even out to the park while they're waiting. It's about respecting them and understanding that their time is valuable and that waiting is really hard on kids.'

‘That's fantastic. What about family participation? I have always thought our kids got better care when Darryl and I were included in decisions and were really participating.'

‘I agree, of course. It's patchy around the hospital right now.'

‘I know a few years ago Aidan was in hospital for a week but then we ended up in and out of Emergency several more times. He didn't want to be re-admitted, which was the hospital's first response. So the team talked with us and we worked up another approach, though we all agreed that if that didn't work he would have to be admitted. Aidan was okay with that because he knew he had been given a choice and he had some control. It really mattered to him. And so it really mattered to me. I would love to think that was how care worked every time … but I'm not sure it does.'

‘No, I'm not sure either. You have to work with me to improve it.'

‘Maybe, but I don't even know where to start.'

Luckily, it turns out that the hospital is thinking along the same lines. Within several months an initial meeting of an inaugural Family Advisory Council (FAC) is held and, due to an inability to keep my hand down at the key moment, I am elected Chair.

The FAC is a collection of twenty family members whose children or grandchildren have been cared for at our hospital across more than twenty-five different services and departments. Several of the parents have been at the bedside through a child's transplant while others are living daily with the challenges of cerebral palsy, autism or other complex ongoing problems. A few have only used the Emergency Department as short-term patients. There's plenty of love and pats on the back for the hospital and its staff, together with gratitude for all it has done for our kids. But we all know we're here to see an enhanced role for families, not only in our own children's individual care but in policy-making and decisions about broader hospital issues.

The FAC dives in immediately, serving up the idea of partnership between families and staff as a means to better healthcare. Some staff embrace the concept, recognising the potential for improvements in safety and satisfaction. But others, well, chafe at it.

We plough on, preaching the key concepts of respect, dignity, shared information, participation and collaboration. Our thinking is that true partnership means patients and families must be brought in to collaborate and work shoulder-to-shoulder with staff. Initially I wonder exactly how much a group of non-medical families will be able to offer a hospital heavy with educated and experienced health professionals. But my hope builds as I get to know the families.

Shane is a father of four. When his youngest child was born with a serious and life-threatening liver condition, one that looked on occasions to rob her of her life, he gave up paid work, instead sharing days and nights on the ward with his wife. After more than a year living in the hospital, with just weeks of life left in her, his daughter Rose received a liver transplant. Shane has seen up-close the value of parent involvement—watching, checking and contributing as a member of the team. And he also knows a lot about life by the bedside. This knowledge comes out one day at a meeting with executives who are making plans for a new hospital.

‘We are happy to have the families involved at some level in the development of the new hospital,' one executive tells us. ‘For instance, you'll probably want to contribute to the decisions around choice of food outlets.'

‘That's great. But, to be honest, families have a lot to offer in other places too,' I reply.

‘Possibly. But most of the issues we're dealing with won't interest families—things like, say, rubbish collection.'

‘Actually,' Shane says, ‘I'm sure it sounds odd, but I'm really interested in rubbish collection and how that's going to work in the new hospital. You're probably aware of how rubbish is collected from each room currently.'

‘Uh, no, I'm not up-to-speed on that actually,' admits the executive.

‘Okay, you know those small half-doors under the counter in each room? Late every night they're opened from the outside, the bins are pulled out, changed and the doors closed again. That process woke us nearly every night for a year.'

‘Oh, I see. I didn't know that was our practice …'

Shane continues. ‘Then there are things like the parent bed. Families are really interested in this. They don't only want a bed that's comfortable, but one that's easy to fold up and can be moved to be closer to their child if needed. I used to work in furniture development so I have a good idea of what's available and what the constraints might be. Could I be involved in this decision?'

The executive looks surprised; this was not what he was anticipating. ‘Hmm. I guess we could rethink the committee spots for family members.'

He's not expecting this level of interest or commitment from families because his own firsthand experience is limited. He has never skulked around dark corridors in his pyjamas at midnight hunting for a nurse; he hasn't spent ninety minutes in a waiting room with a rowdy toddler wondering if there isn't a way to predict waiting times more accurately; he has never searched a dozen vending machines on a Sunday evening, hankering for a food item whose first few ingredients didn't include sugar or salt. For families of sick children, hospitals are integral to a healthy and happy existence for their child and for the family. And those parents are experienced, far more experienced than they'd like to be, in what works and doesn't work for patients and families in hospital. To them, getting this stuff right—the big and the small—is critical.

***

Following on the success of the
Run for the Kids
, Aidan again qualifies for the district cross-country, then the zone and—to our absolute joy—places high enough in the zone race to run in the state competition. On the day of his state championship race Darryl is stuck at a conference in Werribee, miles out to the west of Melbourne. Aidan and I have just arrived at the venue, north of the city, when Darryl calls.

‘Hi Darryl. How's the conference going?'

‘Oh, it's okay. But all morning I've been thinking about how I'm missing Aidan's run, getting more and more frustrated. So—look—I'm tempted to just jump in a taxi right now. It might cost a bomb, though. What do you think?'

‘Great! He would be so excited.'

‘Okay. I just don't know if I can make it there in time; it's only fifty minutes to the start of his race.'

‘There shouldn't be much traffic. I think you can make it—but go right now.'

More than forty-five minutes have passed since talking to Darryl. Aidan has already handed over his tracksuit pants and submitted to a squeeze and a quick kiss on the forehead before jogging off. Now he's lined up across a wide start line with eighty other boys. I'm pacing around nervously and thinking about visiting the toilets for some calming therapy.

‘Susan! Susan!'

I turn around to see Darryl. ‘Oh, thank goodness you're here! It's just about to start.' I begin searching for Aidan. I finally spot his funny shoes with the tomato-red trim surrounded by dozens of shuffling feet. My eyes track up the lanky legs to his slightly tensed face. Before there's time to click into maternal panic, the gun fires and they're off.

We watch as they sprint up the hill, the pack thinning as it slips into the distance. The pace is fast, very fast, the runners leaning heavily into the wind on this chilly Melbourne day. This is the pinnacle, the height of the season for them.

‘Go, Aidan! Great start!'

We can just see him, the tall boy in the red school shirt. Yes, that's him: the boy who did chest physiotherapy and inhaled medicines via a nebuliser this morning, while most of the other runners were probably still asleep. That's the one who swallows more than twenty tablets a day to keep his digestive system cranking. The same child who, we were told, might be lining up for a double lung transplant by this age—to replace his ruined pair—or who would at least have lost more than thirty per cent of his lung function. Who wasn't expected to be keeping up with the other kids on the playground, much less the fastest boys in the state.