I woke early in my hotel room in Sydney, maybe stirred by an internal warning mechanism. Rolling over, I instinctively grabbed my phone—and, as a sign of my age, reading glasses—glancing at the screen. There were a number of messages and several missed calls. But one text, from my brother-in-law, jumped at me. ‘Aidan’s in Stanford hospital. Please call.’
Aidan is my 21-year-old son who is partway through a four-year degree in California. And he has CF.
Rewinding the clock to March 2014, I was with Aidan when he heard he had been accepted to study at his university of choice in the US. It was a momentous occasion for him. But I remember several friends saying to me at the time, ‘I would never let my child live overseas, particularly not with a health issue.’ Was it even my decision to ‘let him go’? At 18, legally and hopefully emotionally, he was ready to be in the driver’s seat, and his dad and I were to become support crew (hopefully not backseat drivers).
This sounds so rational and straightforward, but as all parents know, the transition to adulthood can be thorny and stop-again, start-again. From the sandpit onwards, our kids are taking steps towards independence. Transition is also a long, gradual process for parents, and it may require slowly peeling parental fingers off of the steering wheel; a wheel that CF might give us plenty of reason to cling to tightly.
If you’re a parent, you may have learned through heartache and tough times in the ED or on the ward that a highly vigilant parent is essential. Like the time you noticed that a drug had been forgotten or the wrong dose was about to be administered. Or when you had to go to bat for a particular approach to IV insertion. We all learn to be pushy and determined and forthright—hopefully in the nicest possible way—about what our children need. So how can we be expected to suddenly abandon ship and stand down on the watch? ‘How will my child manage?’ we ask ourselves. Though maybe the real question is ‘How will we manage?’
Yes, yes, we know about the importance of transition in CF as it has been drilled into us since our babies were, well, babies. We know they need to pass the meds test, have 1-on-1 time with their doctor, and self-motivate on physio. We know the importance of teaching strong self-management and advocacy skills to our kids. But, as a mum who may hold the Australian record for most-questions-asked-in-an-appointment, I wasn’t completely confident about passing the torch to my offspring.
Then Aidan boarded a plane to California. And he managed. He learned to order (and pick up) his meds, to attend appointments (on time), to do physio (er, sometimes…), to do extraordinary amounts of exercise, to eat enough (though never before 8am and often after midnight), to take a friend (or girlfriend) to appointments and to ask questions and even disagree (respectfully) with his medical team.
Nine months later, when he had a major health scare, I offered to fly out. ‘No thanks, Mum,’ he said, ‘I’ve got this.’ And I realised that he did have it. Honestly, though I wanted to be there for me, to ease my own stress and worry, I didn’t think my presence would add value. Plus, it might have robbed him of his hard-earned confidence and independence.
Two months ago, Aidan had emergency surgery while at university. My first instinct, again, was to book a flight. Initially he said no, but then changed his mind, welcoming my involvement. Let’s just say I didn’t need to be asked twice. I know he was grateful for my support in his recovery and I think I was helpful.
I wonder if that’s a good test: Do I want to be there for him or for me? There will be times when our recently-turned-adults really want or need us at the bedside or clinic, but it’s their call, isn’t it? We may not eliminate those harrowing middle-of-the-night calls, but hopefully we can have confidence that their health is in good hands: their own.