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producing work, possibly ever again. And as for normal conversations, I’m generally fine and can manage my grief until the cashier at the store or an acquaintance says something overly nice to me, like ‘Hello’. If they go as far as ‘How are you?’ I’m in terrible trouble.
    It would help if I could at least accuse Darryl of burying his head in the sand. Yet he digs in to the research, reading papers and books and mastering much of the material with ease. And then he does what I can’t possibly manage to do: he accepts it. It’s as if one morning he gets out of bed and says to himself, ‘Okay, my son has cystic fibrosis. Now, should I have cereal or porridge for breakfast?’
    That infuriates me. I mean, here I am contorting myself into a psychological double knot while he whistles his way to work each day. He manages to spend his days happily writing papers for the New Zealand government on competition and regulation—as if nothing ever happened.
    The two of us have the same conversation about this again and again.
    â€˜Don’t you even care, Darryl? How can you be so relaxed about something so serious?’
    â€˜Of course I care. But how is worrying about the future going to help? I think we need to get on with our lives.’
    â€˜But how can we get on with our lives when we don’t know what’s going to happen to Aidan? I just don’t get it. How can you be so unmoved … I can’t simply go on living like everything is normal when Aidan’s lungs may be getting worse each day.’
    â€˜What choice do we have? We need to keep him as well as possible and give him the happiest life we can, by being happy ourselves.’
    â€˜I don’t know how to be happy living with this.’
    I try to back off and let him be, which is about as easy for me as watching him go to work with his fly down and a ‘Kick Me’ sign posted on his back. Although we may share some important genes, we have never shared the DNA for emotions. Darryl is more comfortable demonstrating his love by the things he does—alternating night feeds with me, morning cuddles, weekend afternoon naps with our pint-sized baby prone across his chest. When we discuss the future, I can see that his fears are much the same as mine, but our differences in coping mechanisms continue to cause tension.
    We also have disagreements about the minor parenting dilemmas: ‘I changed his nappy last time’, ‘No, at only four kilos and still all slumpy I don’t think he’s big enough to go in the seat on the back of your bike …’ But we also learn to make up more readily, recognising our dependence on one another: we’re in this together and need to make it work. I don’t appreciate, and try to forget, the hospital psychologist’s warning about the high rate of divorce in couples living with chronic illness.
    As the first months pass, the intensity of our life begins to lessen, the way new love slowly mellows. Days and even an occasional week pass with his illness barely entering my mind. In those early dark days it was hard to imagine laughter and beauty returning to our little world. But it does. Each day of living with this condition teaches me more about giving Darryl slack and not panicking so much, about controlling fear rather than allowing it to control me. I learn to focus on the joy in my life, finding it in Aidan, in Darryl, in my spiritual life, in the outdoors—in all the places I experienced it before illness hijacked me.
    And Aidan’s well, very well. Each day, week, month of good health buoys my spirits. Every kilo he puts on takes one off my shoulders. While still reading as much medical information as possible, I’m also realising that life is more liveable if I concentrate on the success stories. Call it denial, but if there’s a friend’s nephew who’s thriving with CF at age fifty-four then there’s