Read Online The Upside of Down by Susan Biggar - Free Book Online

daughters of his own. During the past year he has seen us as often as necessary, taking more time than he probably has available to listen to a litany of concerns and address our anxiety. Despite his calm demeanour, he seems to understand the impact of Aidan’s diagnosis and its weight upon us as parents better than we can right now. He tugs slightly on his beard as he tries to kindly steer me through a brief genetics review, all of which I already know, towards a reality that’s bearing down like a road train.
    â€˜We know that both you and Darryl carry a normal copy of this gene,’ he says, focusing on the positive.
    â€˜Yeah, okay. But we both must also have a “CF” copy of this gene.’ I know that each parent passes on one gene or the other, as we might for hair and eye colour, athletic ability or taste for garlic. Actually, I’m not so sure about the garlic.
    â€˜I know you understand this … but it’s worth repeating that the statistics are the same with every pregnancy—’
    I interrupt him. ‘You mean, already having one child with the condition doesn’t make our odds any better?’
    â€˜That’s right.’
    â€˜It would if the world was a slightly fairer place.’
    He ploughs on with the optimism. ‘Of course, the good thing is that you have a seventy-five per cent chance that the baby will be healthy.’
    There’s a long silence before I speak. ‘It’s funny how seventy-five per cent can sound so promising and so unbelievably frightening at the same time.’
    â€˜I know … I’m very sorry.’
    He leans forward as he speaks, looking steadily in my eyes, his words drawing out my tears. I am always moved by expressions of empathy, no matter how hard I try not to be. But his compassion and engagement are particularly powerful in contrast to the emotional distance we have felt from some health professionals this past year.
    â€˜What I’m finding really hard right now, David, is that there’s nothing we can do to influence the outcome.’
    The two blue lines on the test confirm that this baby’s genetic future has already been set in concrete and no amount of vitamins, balanced diet or praying will change that.
    ***
    At eleven weeks we will have a decision to make. We can have a test, called chorionic villus sampling (CVS). It will tell us whether or not the baby is ‘affected’, as the doctors call it, by cystic fibrosis. If the answer is yes, we’ll then be faced with a bigger and more vexing decision.
    The wait until eleven weeks seems never-ending. As if morning sickness isn’t ample suffering, the mental and emotional gymnastics leave me yearning for my first pregnancy. Back then the biggest worry was not fitting into my favourite Levis. In those days I carried only a vague concern that all parents-to-be have, of something going sour. Now there’s a sense of clear and present danger each time I put my hand to my tummy. Everything around speaks to us about the decision we may face, a constant tug-of-war of the heart and mind.
    â€˜Have you read the paper this morning?’ Darryl asks me, as I reach for the cereal one Saturday at the kitchen counter.
    â€˜No, why?’
    â€˜There’s an article about two girls with CF.’
    â€˜Really? What does it say?’
    â€˜They’re five-year-old twins. They’re already very unwell. It says they go in and out of hospital constantly.’
    â€˜Oh, that’s depressing …’ We’re both quiet for a few minutes, before I continue. ‘Sometimes when I think about the reality of two sets of physio a day, drugs for two kids, hospital trips and the worry and pain, I think—“No, I can’t do it”. It’s so daunting to even consider living with the agony of an uncertain future for two kids. How could we do it?’
    Darryl doesn’t respond. A few moments later I go on.