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Coping with CF: A Parent’s Perspective | My Cayston Community™

kat porco

As parents, it seems that the scars imprinted upon us by CF should be evident the moment one sees us. But the irony is that the only scars that we hold are on our hearts. When your child grows up confronting chronic pain, difficult procedures, and the fear of their own mortality, it can feel impossible to put one foot in front of the other at times.

We are allowed to wallow in a place of unfairness, but then we must regain our composure to face the ugliness and the beauty of CF. Our job as parents is not to remove the fear or the pain, it is simply to model how to manage with grace. We hope that our children learn how to fight, grieve, and ultimately accept this disease as a part of who they are.

There have been many times since my daughter Maylie’s diagnosis that I’ve needed help coping with the disease process. I’ve put together some tips for making it through the parts of the journey I struggled with the most: the diagnosis, hospitalizations, and the inevitable progression of CF. It’s during these times, when we’re managing the ups and downs that come with CF, that we need to have a plan in place for self-care and coping.

There have been many times since my daughter Maylie’s diagnosis that I’ve needed help coping with the disease process.

CF diagnosis and beyond:

The words "Maylie has CF" initially turned my world dark, and fear consumed my every thought. I remember exactly where I was standing when we heard the news. I know what I was wearing, the color of the sky, and the sounds that surrounded me in that fateful moment. It is etched in my memory. In those first few months, it was hard to imagine that life would ever be the same again. Life will admittedly be forever changed. But, you will find a new sense of normal.

These two things helped me cope with the initial shock and pain of Maylie’s CF diagnosis and the day-to-day ups and downs of CF:

  • Find an adult with CF who absolutely floods your spirit with positivity. Read every uplifting blog that you can find, reminding yourself that though life will be filled with hurdles, those hurdles can make life even richer. Look to the wisdom that our community holds to find your reassurance. I remember the exact moment when Emily Schaller answered my phone call. I could hear the smile on her face, and the joy that filled her life. That was my "moment." I knew Maylie would be able to handle it.
  • Find something that is just yours. Life changes with CF. Daily life is suddenly dictated by treatments, therapies, and clinic appointments. You must practice self-care and not lose yourself in this disease. Find a day and time that you can dedicate to your heart. Even if it is simply meditating, listening to your favorite playlist, or going for a walk. Make time to honor the journey that you are on.

Trips to the hospital: No matter how life altering and trying hospitalizations are to our emotional health as caregivers, it is imperative that our children are not made to feel guilty or to dread this necessary component of CF disease management.

Ways in which we have learned to honor the inevitable admission are:

  • Hold a "getting healthy" party before going to the hospital. Ask friends and family to join in and bring used books or games to use during the hospital stay to make the time go faster. We always call it a "celebration." Remember that your child will view hospitalizations as you teach them to view them. If you make them feel like this is an opportunity to focus on their health, they will grow up feeling more gratitude than dread during these times.
  • We minimize TV greatly between admissions so that when a hospitalization arises, we can binge watch all the shows that make us smile.
  • Have date nights!
    • Maylie and I plan a whole evening of activities. We put up white lights and decorations in the hospital room. We play games. We order pizza. We play music. We just enjoy being together. We schedule it with the team around IVs and respiratory therapy so that we can have uninterrupted time (as much as possible anyway).
    • My husband and I keep our relationship on the forefront of each stay, too. Our hospital is over an hour away so we usually spend weekends together. We make sure that we schedule our days full of games and walks with the kids, and we take the nights off and reconnect outside the walls of the hospital.

CF progression: It's when I've actually begun to settle into this CF journey that the phone call comes—a new CF-related diagnosis or a positive Pseudomonas aeruginosa (Pa) culture. While we are all aware of the possibility of these diagnoses, we live in hope that the phone will never ring.

  • Give yourself the permission to grieve the diagnosis away from your child. I remember when I received a particularly difficult phone call from our care team, I sent Maylie to the playground with friends. I cried about the unfairness, the new constraints that would be applied to her life, and the feeling of "one more thing."
  • Reach out. Once I could hold a conversation without getting upset, I called a friend whose daughter had the same diagnosis, and I found hope that we could take this on, too.
  • Model the reaction you want to see. Once I felt in control of my emotions, I approached our daughter. While I had already made her aware of the possibility, I explained the diagnosis AND how we were going to work as a team to manage it. She saw me in control and confident, she knew there was a plan in place, and I believe that helped her to not feel overwhelmed.
  • Remember the cliché that "this too shall pass," because despite how it feels in that moment, it will. You will admittedly be impacted by this new diagnosis; however, you have the option to take the opportunity to become educated and empowered to care for this, exactly as you have done with other aspects of CF. Do not allow fear or anger to be your guide, use hope and tenacity—they will never lead you astray.