How CF Has Affected Our Family Dynamic
It is a challenge for me to remember two things: what life was like before being a parent, and what life was like before cystic fibrosis. In many ways, they are similar. We had a lot more time on our hands before kids and CF and, in general, we were much more carefree. We also did not check the back of sanitizing products and probably could not pronounce pseudomonas aeruginosa. However, a big difference is that being a parent brings indescribable joy to my life every day, while cystic fibrosis brings worry, second-guessing, and constant diligence.
How cystic fibrosis has affected our family
Health influences every decision
The most obvious way that cystic fibrosis affects our family dynamic is that our daughter’s health is at the forefront of every thought and decision we make. Sometimes this comes out in big ways, causing us to make major life decisions with her health in mind. Some examples include deciding which state to reside in based on insurance benefits and continuing to live within a close drive to our CF clinic because we find the care to be impeccable.
We also made the big decision to send Margo to full-time daycare from the time she was four months old because we believed the socialization and enrichment opportunities outweighed the risk factors.
Increased infection prevention measures
It also appears in small ways. We’ve canceled get-togethers last minute because someone casually mentioned they had a lingering cold but felt it was fine to still hang out. We redirect Margo at public playgrounds when we see a sandbox or equipment filled with standing water.
Long before COVID-19, we had Margo wear masks on airplanes and at her clinic appointments so she could practice what will become routine in high-exposure areas. And we were always the family who would wipe down every surface inch before sitting down at restaurants or checking into hotel rooms. Our pre-parent selves would have probably found this practice over the top, but it is ingrained in us now.
We are very activity-focused
Cystic fibrosis has unexpectedly affected our family in many positive ways. For example, we were encouraged by our daughter’s clinic to allow her to be as active as possible, so when we’re able to enroll her in an activity or sport that both interests her and has the bonus of working her lungs, we are happy.
Being active runners ourselves, this is something my husband and I would have encouraged regardless of our child’s condition, but knowing the benefits for someone with CF makes it even more essential. We love seeing her try and enjoy many different sports at a young age and are excited to continue cheering her on as she grows and her interests continue developing.
We are advocates
Prior to our daughter’s birth, I had never found a cause that meant something meaningful to me or that I particularly felt a call to advocate on behalf of. Sure, I donated to fundraisers and walked in a Great Strides event in memory of my cousin, but the drive to advocate, raise awareness, and contribute directly to finding a cure was not on my radar. It is a powerful feeling to have that motivation, and I am grateful for it.
Cystic fibrosis affects our every day lives
However, I count our blessings with caution. My daughter is young and this is a progressive disease. I know there will be many extra treatments, countless pills, and potentially even hospitalizations. But the ways in which we live every day, the steps we take to not keep Margo in a bubble, and watch her run and play every day with friends, I believe make us better parents than my pre-parent self could have imagined.
How has cystic fibrosis affected your family? Share your story.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?