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.
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.
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!
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