I have been cutting deals all of my life. Not drug deals, but deals with the ones I love. The first ones I remember were when Darryl and I were newlyweds, learning to blend two different lives and varied priorities about free time, money, even chores. I recall proposing that we clean our apartment once a week, he countered with once a month; eventually we compromised and agreed on once a fortnight.
Turns out marriage was good preparation for parenting, and maybe particularly for parenting in the context of CF. Because no matter how hard the physiotherapists try to jazz up the practice with cute devices (acapella and flutter) and ‘fun’ versions like bubble pep, physio doesn’t have half a chance of capturing the imagination like Clash of Clans, a Garth Nix book or even a much-watched Harry Potter film. When my boys were very young – as in too young to know that the term ‘talk back’ wasn’t always limited to the radio – I couldn’t contemplate compromise on CF care. But nor could I contemplate my babies with bigger feet than me, having a later bedtime, or teaching me how to use the TV remote (over and over).
I have probably always approached their health with some black and white views. ‘Physio must be done in this way, for this long, this often, exactly as the physio says.’ As they grew, my kids wanted to run more and do more strenuous exercise—with less physio. I said ‘Great! Run, exercise, but no cutting back on physio.’ We fought this for years, until I began to see the benefits of what they were doing and their commitment to it. They were running hundreds of kilometres a month, maybe not equivalent to their physio, but keeping their lungs healthy.
Then there were the enzymes. I worked out a pretty darn good fat calculation system when they were babies. I swore by its accuracy. As they became more independent, they seemed to graduate toward a slightly less systematic ‘whatever comes out of the bottle into my hand will be right’ approach. I hated it. But I had to let go. And they had to (and did) eventually understand the importance of getting this right – their own way.
Maybe this has been one of the biggest lessons I have had to learn in transitioning health care to my children (the two with CF are now 15 and 18). I started off assuming that it was going to be all about teaching teens to take responsibility, to get off their backsides and learn a thing or two about the challenges of CF care. But, of course, like far too much of parenting, it turns out that it’s often about what I need to learn. To let go. To let them do it their way. To trust them to find their own path.
Oh, don’t get me wrong, I have done plenty of pointing the way, leaving signposts, maybe even dropping a trail of breadcrumbs to attempt to influence their path. I am still not always comfortable with what they choose. Like all young people their focus on CF comes and goes. They tend to focus on doing one thing, such as exercise, while ignoring the other dimensions (nutrition, infection control etc.). And their life horizon barely extends to the end of the year, let alone the next decade.
But in the end, it is their health, their life and their decisions. And if I have taught them to care about that – their own way – then that may be the best deal I will have done in my life.