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lung function per year. That’s a lot to lose by the age of ten.
    By the end of the first month at home, his second month in the world, things are not going in a good direction. Aidan’s bottom is sore, raw and bleeding because he’s not properly digesting his food and the enzymes are travelling through his system and burning him on the way out the door. He’s in agony. And he still hasn’t returned to his puny birth weight. His face is gaunt, skin hanging off his cheekbones, legs like chicken wings, meatless. Our baby is starving.
    I phone the doctor.
    â€˜Look, we’re going crazy trying to get these enzymes and breast milk into Aidan. It’s just not working. His diarrhoea is terrible and constant. We don’t know what to do anymore, but we have to do something for him.’
    I sound like the fraught, worried mother I’m becoming, and swore I would never be. But this is no time for hiding my concern. I’m desperate.
    â€˜Pack a bag and bring him in to the hospital. I’ll do the paperwork to admit him this afternoon,’ the doctor answers without hesitation.
    By the end of a week-long admission, remarkably, Aidan has added nearly fifty per cent to his body weight. Just as exciting for us is the appearance of his first-ever solid poo; Darryl and I consider framing the dainty little log as we were beginning to wonder if his digestive system would ever get its act together. Though hardly chubby, he looks a lot better after a week on a foul-smelling but effective ‘partially digested formula’. I briefly ponder the question of who digested it the first time, but I would feed him horse food right now if it helped put on kilos.
    Like many first-time mums I have been committed to the idea of breastfeeding, ridiculously so, as though ‘success with the breast’ would somehow define me. As I watch the pre-digested formula shooting Aidan up the growth charts, I casually drop my breastfeeding into our family’s change-ofplans basket and watch my son begin to thrive.
    ***
    Aidan’s diagnosis is made in an instant, by a pathologist in a lab somewhere, testing blood spots one morning and writing ‘positive’ on a piece of paper next to our son’s name. Finished, done, off to her morning coffee break. Just like that. But how long will it take to adjust my worldview, faith and optimism to face a life that suddenly seems, well, a lot shittier? We have brought a gorgeous, seemingly perfect baby into the world, but his future feels as flimsy as rice paper.
    In some ways it’s a blessing that babies keep people very busy and very tired. As long as I’m swept up in the day-to-day practicalities of nappies, food, dishes, laundry, nappies, food, sleep, then I can just about cope. Of course, I rarely have a shower before midday, mail is left unopened and I regularly meet Darryl at the front door after work with teary eyes and a grumpy child in my arms. But my friends with healthy babies are no different, so I try to tell myself that I’m more or less on track for life with a newborn.
    However, when life slows down the whole facade threatens to cave in, as I crumble under the fear of what books say usually happens, what doctors predict could happen, what we hope won’t happen. Even my faith has been dealt a major blow: how do I turn to a God who has been there so often in the past now that I’m loaded with anger about the hand we’ve been dealt?
    And then there’s Darryl. Looking at him, one would think his son has been diagnosed with a cowlick. Isn’t it hard enough adjusting to illness without living with Pollyanna, the eternal optimist? To be fair, maybe it’s not so much optimism as exceptional coping skills. At least on the outside he’s totally functioning: showering, eating meals, going to work, carrying on normal conversations. I manage the first two about fifty per cent of the time, but simply can’t fathom