Helping Our Children Understand Anna’s CF

There have been a few moments over the past four years that have provided us with perfect opportunities to give both of our kids a fuller understanding of the multifaceted nature of cystic fibrosis.

| 5 min read
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Kate Becket
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I struggled for a time after Anna's cystic fibrosis diagnosis, wondering how it would change our lives and shape our kids. What I've found is that it's impossible to not be changed at all, but that some of those changes can be positive. This year, I've seen just how much both of my children, Anna, 4, and Jack, 6, have learned, and now understand, about Anna's CF.

One thing I've come to realize is that my children are who they are, despite having CF in our lives; but I believe that it has deepened the traits they were born with. For instance, Anna has taken her fearlessness and channeled it into an important part of staying healthy. Jack has always been the sweetest and most compassionate boy, and this has only deepened his intense love for his sister. I still worry sometimes about the added responsibility for both of them, but I also see how it helps them grow their confidence, their independence and their relationship.

We have never let Anna's CF define her, but it is a part of her that is always present. It may not always be on the forefront of our minds, but it's there like any other trait, as present as her bouncy blonde curls.

Recently, Anna was excited to find out that she is a card-carrying member of the X-Men. While watching the movie one night, we were trying to explain mutations and how the X-Men got their powers and it provided the perfect way to work a little CF teaching into our lives. Anna got to learn more about how she was born with a genetic mutation -- how it gives her sticky mucus and means she needs to do extra things to take better care of herself, but it's also how she gets her super strength and bravery.

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These little moments, which have been cropping up for the past four years, have provided us with the perfect opportunities to give both of our kids a fuller understanding of the multifaceted nature of cystic fibrosis. Jack starting school provided us with the opportunity to teach him and Anna about how germs spread and the importance of washing their hands. Going on hikes gave us the opportunity to talk about things to avoid outdoors, like stagnant water. Going to the beach and pool in the summer was a learning opportunity about the importance of Anna staying hydrated. Playing soccer and doing ballet was a good way to explain the importance of being active in order for her to stay healthy. And the X-Men gave us the opportunity to talk about genetics, and what makes each of us unique.

Every doctor's appointment has served as a learning opportunity as well. We explain things as they're happening for both of them. Anna has always done best with explanations about what exactly is happening and why. This might sound wild for a 4-year-old, but like I said, super powers! She hates surprises, so as long as she understands what is happening, she will feel like she has some control and can handle anything -- never even shedding a tear during blood draws.

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We've also greatly benefited from some resources we've found, like the book Who I Am by Genentech, which was given to us at the Johns Hopkins Clinic. We were also sent the book Sticky Icky Booger Bugs by Sherry Frith, which was another creative way for them to understand what was going on inside of Anna's body in a way that resonated with children.

Complete honesty, answering questions and embracing learning opportunities as they arise is what has worked for us in helping our children understand Anna's CF. Our approach may not be the approach for everyone, but I know that for us it has taken away a lot of CF's power and ability to produce fear. There will always be unknowns, but we are always willing to share with them what is known.

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I can see Anna's confidence growing in caring for herself and staying healthy, and I see her determination to get better when she isn't healthy. I see Jack's confidence in caring for her and helping her with her therapy or medicines. I can see his confidence when he explains to her things that aren't safe and why. I see my happy and loving children working together, and I know that, for now at least, we're doing it right.

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Parents & Guardians | Diagnosis
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Kate Becket is married to her high school sweetheart Alexander and is raising their two children, Jack and Anna, in Pennsylvania. Anna was diagnosed with CF shortly after her birth. An English major at Penn State University, Kate decided to use her passion for writing to inform others about CF, keep everyone updated on her family and fundraise for the cause on her blog SisterFibrosis.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.