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80 A diagnosis of CF is unquestionably a shock and a sorrow, a critical moment in the lives of parents. They remember it vividly even many years afterward. They relive it often, recalling every detail of who was kind and what was hurtful as it unfolded. It is the moment that ends the parents’ pre-diagnosis existence and marks the beginning of their careers as parents of children with a genetic disorder . Once on the postdiagnosis side of the divide, parents can never go back. Facing a present and a future shaped by the diagnosis, they have much to say about going forward—about the impact the CF diagnosis has had on how they connect with and view their child from infancy onward, and about how their parenting practices and styles unfold once they know about the disorder. Living with the Ghost of CF Any diagnosis of disease occupies the forefront of parents’ lives when it is new. Most are utterly preoccupied, at first, with understanding and responding to the news. Over time, as with any seminal event, there is a process of acclimatization ; the disease begins to take its place within the family context, no longer occupying every nook and cranny of available time and space. However, it is never far below the surface, even in times when the child is healthy or when other major life events—the birth of other children, divorce, career changes— are occurring. As one mother puts it, CF is “nothing I can just put in the back of my mind. . . . I know every minute of every day.” Another describes her pain over the diagnosis as constant, something she thinks about “every time” she looks at her son. A third describes knowledge of CF as “just a burden, there’s just a weight, . . . there’s just a little shadow lurking around. . . . It’s almost like Specters in the Room Parenting in the Shadow of Cystic Fibrosis Chapter 3 Specters in the Room 81 there’s a ghost in the room you need to live with, . . . and that ghost is cystic fibrosis.” For most parents receiving a CF diagnosis during their child’s infancy, that ghost transforms their perspectives on their child and haunts their dreams of what the future might hold. The context in which their parenting unfolds suddenly feels like a bounded one, one that might no longer be able to hold the grand dreams or the lavish hopes that come with a sense that you are caring for the next generation, the one that will outlive you. Suzanne describes the change she underwent during Quinn’s infancy this way: “I think beforehand you sort of think about—like you have certain dreams and expectations of what life with your child is going to be like and . . . that they are gonna live a normal life and be happy and healthy and everything else. But afterwards it’s all different . Like you sort of think about, well, no, it’s not always gonna be healthy and maybe they’re not going to live for as long as you think that they would’ve before knowing about it, and I . . . think it just changes your perspective on things.” Paige’s dreams for her baby were also radically altered when she received the newborn-screen diagnosis, her taken-for-granted optimism also suddenly shattered. “I was going to do everything to make sure this child would grow up to be a great individual who—you know, with a great childhood . . . that thrived so well. I was going to do everything in my power to make sure everything went well for her, and all of her dreams were coming true. When I found out she had cystic fibrosis . . . , a lot of my dreams for her—I felt like they very well could die, because CF might take her before she can attain these dreams.” For Kayla, diagnosis when her son was a newborn felt like a violation of every assumption she had held about what it would be like to have a baby and become a parent. “You don’t expect to have to deal with something like that,” she says, “knowing that through your whole pregnancy you are so excited about this beautiful healthy baby.” The arrival of the diagnosis obliterated this excitement, replacing it with grief, denial, confusion, and the sense that maybe she got the wrong baby. “That wasn’t supposed to happen,” Kayla observes. “This is a healthy baby, we are young healthy...

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