31 Days of CF: Jenny’s Story

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by Luisa Palazola |

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Day 17 of 31 Days of CF⁣⁣ Topic: My child’s knowledge of my CF⁣⁣ ⁣ This is @jenny_livingston experience: ⁣⁣ ⁣ My nine-year-old daughter, Morgan, has known the words “cystic fibrosis” for as long as she can remember. As a parent, I have tried to create a culture of openness in our home, which has included candid conversations about CF. ⁣⁣ ⁣ By the age of 7, Morgan could give a better description of CF than many adults I know, including some family members. She has attended many clinic appointments with me. She’s had countless overnight stays with me in the hospital. I have always allowed her to be as involved in my healthcare as she wants to be. When we talk about CF, I let her guide the conversation, never giving more information than she asks for, but also ensuring that I’m as transparent as possible. ⁣⁣ ⁣ I won’t lie, this has led to some incredibly difficult conversations. Morgan was just 6 years old when she looked me in the eyes and asked, point-blank, “Mom, can you die from CF?” I believe that honest questions deserve honest answers, so that was the first time we sat down together and talked about the harsh realities of this disease. ⁣⁣ ⁣ I always wonder if I’m doing the right thing. Am I traumatizing her by sharing all this information early in her life? But, I believe it’s better to face the scary truth hand-in-hand than let her face the unknown on her own. Because she knows she can come to me with any question or concern, she is never left alone to wonder. ⁣⁣ While she understands how brutal this disease can be, she also knows that I am filled with hope and that I do everything within my power to keep this monster at bay. She understands the need for my treatments, medications, and hospital stays, and she is one of my greatest cheerleaders. ⁣⁣ ⁣ CF adds a dimension to parenting that can be difficult and terrifying. The ways in which we choose to discuss CF with our children will be as unique and different as each of us are. Complete honesty has been my approach from the beginning. And when Morgan comes from school, her face beaming, and she excitedly says, “Mom, the lunch lady asked about my Great Strides shirt, so I got to tell her all about you”

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