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December 10, 2019 at 12:35 pm #14190Jenny LivingstonParticipant
On Instagram, I’ve started a series called Real Talk Tuesday where we delve into the parts of CF (and life in general) that are sometimes difficult to talk about. Join the conversation on Instagram or here in the forum.
My daughter 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. She has attended clinic appointments and 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 being so open? 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 fight it. 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 as each of us are. Complete honesty has been my approach from the beginning. 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 and cystic fibrosis,” I feel like I’ve made the right choice.
I’m curious, if you’re a parent with CF, how do you approach this?
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