excellent spaghetti sauce to organising a two-week tour of Tanzania. But holding a poker face is definitely not in her skill set. Worry is pouring out of her like sweat.
âItâs the hospital doctor. He says itâs about Aidanâs second test results.â I take the phone from her.
We have a brief discussion. Immediately after hanging up I can remember only two main points from the conversation. First, the doctor said it was likely Aidan did have cystic fibrosis. Second, we would have to wait two weeks for a definite answer because he was going on holiday the next day.
Generally, I donât hate people. Itâs not because Iâm so virtuous, but being oversensitive and, okay, a little emotional, Iâm not the type of person who can easily manage enemies. But at this moment, anger is streaming through my veins like hot snakeâs venom. This man may have a trail of letters after his name and framed diplomas on the wall, highlighting his medical expertise; however, with bathers to pack and a plane to catch, his supply of compassion and helpfulness has run dry.
âThere must be some other doctor who can meet with us while youâre away?â
âNo.â
âIsnât there a way you can access the results before leaving?â
âNo, itâs not possible.â Then, the clincher from him: âAnother few weeks isnât going to make a real difference for Aidanâs health.â
Maybe not Aidanâs, but it could most certainly be life or death for my frazzled mental state. I mean, really, weâre not talking about a diagnosis of colour-blindness.
It turns out that doctors come in many shapes and sizes, some much more attuned to patientsâ and familiesâ needs than others. David, our family GP, is a man with a listed home phone number and astonishing kindness, despite being pulled away from his meat and three veggies by a frantic new mother.
By eight oâclock the next morning David has organised an appointment with a different, non-holiday-bound, doctor. Several hours later Darryl and I meet him and a geneticist at the hospital. We listen as he confirms the diagnosis of cystic fibrosis.
I climb into the back seat of the car, alongside a peacefully sleeping Aidan, for the drive home. In my husbandâs typically steady and unemotional way he has stuffed the news in some pocket, returning to work with the vague expectation that life as we know it will continue. I could no more do that than tie my ankles behind my head.
My dad is driving the car, my mom silent beside him. They are in New Zealand to wash nappies and rock crying babies, not help us pick our way through grief and shock. The mood is brittle; talking seems like something I should do, to comfort my parents and be comforted. But my words have vanished, left behind at the hospital, swept away.
Instead I stare blankly at familiar buildings and streets flashing pastâthe optometrist, bank, primary school. Iâm surprised to see people casually walking to lunch and doing their shopping, the kids running in the playground appear relaxed and happy. Wellington, on this clear morning, looks so much like it did an hour ago, yet it canât be the same place. Everything has changed.
2
DEFINITIONS
In the weeks that follow Aidanâs diagnosis, Darryl and I graduate from medical kindergarten, pressing on through grade one. We quickly learn to sift through confusing New England Journal of Medicine articles, ferreting out any helpful scraps of information. I read books and articles at two oâclock in the morning, while feeding Aidan. We both rake the internet, visiting websites relating to cystic fibrosis. There isnât time to even crack open the non-medical What to expect the first year parenting book.
This is not what we expected.
For most of my life I had been, like so many other people, happily ignorant of the medical world. My three sisters became nurses but I studied