Navigating CF's Ups and Downs

The unexpected ups and downs of having a son with cystic fibrosis sometimes makes me feel like I'm on a game-show obstacle course, dodging punches and avoiding the mud pit. It helps to do my research, keep lists, rely on my support team, and take some “Mommy time” to get through life's daily challenges.

| 6 min read
Stacy-Allen-Headshot
Stacy Allen
Stacy-Allen-Son-Smiles-Featured-Rectangle

Recently, our family was watching a game show in which participants have to try to complete obstacle courses with over-the-top, brightly colored, unexpected obstacles in their way. As spectators, it was thrilling to watch from the comfort of our home and laugh together as the contestants courageously tried to scale a wall while trying to avoid the giant red boxing gloves that would inevitably send them to the mud pit that lay below. Relentless and with a determination to finish, the contestants would crawl out of the mud pit and try again and again. Each time got progressively harder as every surface and crevice became caked in slippery mud. The first couple of times we as a family laughed and laughed, but soon we found ourselves cheering on and encouraging the contestants -- hoping their resilience and perseverance would lead them to victory.

Stacy-Allen-Son-Smiles-Featured-Rectangle
Stacy with her son and CF warrior, Evan.

As a parent to a child with cystic fibrosis, I often feel like a contestant on one of these game shows, thrown into an unfamiliar world with brightly colored obstacles, unknown surprises, and a constant fear of the inevitable gut punch that serves as an unwanted reminder that no matter how hard I might try, my child still has a chronic illness. I find myself daily scaling the wall of CF life, strategically placing each step, and diligently going through the “ings” of each day, as I like to call them -- feeding, therapy-ing, nebulizing, sterilizing, homeschooling, disinfecting, insurance-ing, scheduling, parenting. It's a well-versed routine, one that has been mastered through years of fine-tuning every step, maneuvering every hand hold needed to scale the part of the wall of CF life I know, the parts that are familiar to me.

But inevitably, the landscape changes year to year. A hospital stay, a sinus surgery, a G-tube, a decrease in pulmonary function tests, elevated liver enzymes, CF-related diabetes -- the list goes on. Unexpectedly sucker-punched, I find myself in the mud pit -- tired, exhausted, weighed down by mud, full of emotions, and back at the beginning.

It's during these gut-punch moments that I take a little extra time to enjoy the unwelcome mud bath I find myself in, pull back from some of the other distractions in my life, and focus on getting back to the wall.

DO MY HOMEWORK

When faced with a new CF challenge, I immerse myself in the education surrounding it -- research articles, background work, and reaching out to other CF families and clinical staff -- learning all that I can so that I can be an equal part of the decision-making process. I am my son's most important advocate, a job I do not take lightly. With knowledge comes power and an assurance that every decision and choice made for my son is the best one possible.

COME UP WITH A GAME PLAN

If you're like me, you work through a daily mental checklist. However, during these times of unexpected change, my already full mental list becomes increasingly hard to keep track of as my priorities are forced to change. So, I go old school and create a physical to-do list day by day. I prioritize things based on importance and urgency and add to it as things come up during the day. Physically writing down and then crossing items off my to-do list helps to restore my sense of control and gives me time to analyze further actions.

BUILD MY TEAM

When the going gets tough, I gather my team for support. We come together as a family to divide and conquer. My husband and I devise a master plan to split the CF responsibilities that we shoulder equally, doing our best to support and lift each other along the way. We have a one-on-one chat with my oldest son, explaining the shift in our daily routine to make sure he feels included in the process of taking care of his younger brother with CF. Together, as a family, we patiently work together to adjust to our new normal.

GATHER OUR VILLAGE

It takes a village, especially when you're raising a child with a chronic illness. Although it doesn't come naturally, I have learned the best thing to do during these times of unrest is to turn to my support system and ask for help -- frequently referencing my to-do list. By confiding in our friends and family, I find a safe outlet and the help and support I need. And vice versa, they get a window into the life of CF and play an important part in our CF journey.

COMMERCIAL BREAKS

Every day, not just during the hard days, I make sure to call a commercial break and carve out 30 minutes for myself -- “Mommy time” as it's referred to in my house -- no matter how old my kids get.

How easy it is to become overwhelmed by the responsibilities of raising a child with CF. But the best gift I can give my son is the gift of a healthy and confident mother.

Taking advantage of small moments to recharge is key to keeping my cup filled. I have yet to meet a more fearsome contestant in the game of life than that of a parent to a child with cystic fibrosis. Though our course may be filled with unexpected obstacles and unseen challenges, I am confident our resilience and perseverance will pay off and, in the end, we will raise happy, thriving children -- the greatest victory of all!

Interested in sharing your story? The CF Community Blog wants to hear from you.

Share this article
Topics
Parents & Guardians
Stacy-Allen-Headshot

Stacy is above all else a mother to two beautiful boys, Jaxson, 10, and Evan, 7. Evan was diagnosed with cystic fibrosis at 5 weeks old. Motivated by the parents who have gone before her, Stacy is passionate to do her part to propel the mission of the Cystic Fibrosis Foundation forward. Stacy is actively involved in her local CF community and serves as one of the Primary Children's Cystic Fibrosis Clinic's Quality Improvement Patient/Family Partners. She also serves on the Primary Children's Cystic Fibrosis Foundation Parent Advisory Council and is an active board member for the Utah/Idaho chapter of the Cystic Fibrosis Foundation. Nationally, Stacy serves as one of the tri-chairs for the Experience of Care Steering Committee as well as one of the patient/family members for the Liver Disease Guidelines Committee. Stacy lives in Utah with her husband and two boys, supporting her sons in their sports, activities, and piano. Follow Stacy on Instagram and Evan's journey on Instagram.

Recent Community Posts
How My Exercise Capacity Improved After Going on Oxygen
Blog | 6 min read
What To Do When “Most People Will Be Fine” And You Are Not “Most People”
Blog | 8 min read
Struggling to Process My Son’s Rare Mutations
Blog | 6 min read

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.