Adulting is something I don’t think I was necessarily prepared for. That’s not to say anyone is, really, but with CF, it was something I didn’t ever let myself put too much thought into. While having CF has given me responsibilities and ownership of my care from a very young age, what I was mostly unprepared for is the mental load of being an adult with a critical illness. Working a full-time job, managing CF-related appointments, managing regular appointments — like dentists, car maintenance, household tasks — and staying on top of prescription refills (you get the idea) can be overwhelming on a good day. Adding in the blessings of children throws a few more loads of tasks onto the plate, as a mom. 

I like to use the analogy that CF is a “hard” that I, we, and you did not get to choose. Being a parent is a “hard” that I was fortunate to choose. With that, I accepted and anticipated, as much as anyone could, what new responsibilities being a parent would bring in. 

My husband and I had several conversations about what our family plan would look like. Right after we got married, he underwent genetic testing, and we had in-depth conversations with my CF care team to review my lung function. We also discussed a timeline for having kids before my lungs deteriorated further and evaluated the risks of carrying a baby — ALL things were considered. 

Then, Trikafta entered the picture, completely transforming my quality of life! It did not improve my lung function baseline but kept it stable, which was more than I thought possible. 

I got pregnant with my oldest daughter in the early months of the pandemic, which, honestly, was a blessing in disguise! While the world slowed down, I let myself rest, worked from home, made no obligations to social engagements, rested some more, and felt that I experienced all parts of pregnancy in the most intimate way. This experience also kept me mindful that, despite Trikafta, I still have CF. 

As we welcomed our daughter into the world, during the welcoming ceremony (birth), my CF care was just as important as this tiny human. As hard as was for me to ask for help, especially as a first-time mom trying to learn life with a baby, it was, and still is, necessary for me to clearly communicate to my husband how I’m feeling and what I need. 

Breathing treatments during breastfeeding? Check. 

Napping when the baby sleeps? Harder than it sounds. 

Prioritizing meals so my body stayed nourished? Even harder. 

While all these things were hard, being run down by CF was HARDER for me to accept or allow.

When I eventually went back to work, I enrolled my daughter in daycare, and life continued as usual. Being open about having CF with my colleagues and bosses never allows room for them to question when I need to take time off for appointments or simply recharge my batteries. Post-pandemic mindsets were shifted, but my priorities remained. What I have found to be helpful is to schedule all my quarterly CF appointments at the beginning of the year; that way, they are on the calendar. If something comes up, fine, we can adjust. 

When things get too heavy, communication with my husband is a two-way street. It requires me to communicate and him to receive that he will need to pick up the slack. I use the present tense here because it was the same four years ago as it is today.

We welcomed our second daughter in late 2024, and what a beautiful challenge this was. Not only did we have a toddler, but now we have another newborn with time on fast-forward. I had to heal from a cesarean section, try to breastfeed, stay on top of my breathing treatments and medications, and do our best to keep up with our energetic, passionate toddler. Whoa. Hours turned into lost time, but we managed to bond and figure out how to manage our lives as a family of four. 

When I chose to return to work in January, it was another effort to put my priorities first. Flexibility, working from home, doing life on my schedule, building a career where relationships come first, and being my authentic self are all celebrated. Having two kids is more of a balancing act and requires much communication and planning. Working from home is certainly different from the office job life, but it’s no less challenging to coordinate and plan all aspects of life.

If anything, growing up with CF has given me skills in planning, time management, and communication. This has integrated into my parenting style with ease, but I am here to tell you that we are HUMAN.

We don’t have an endless battery, and it’s important (to me) that my kids know it’s safe to rest and important to prioritize our health — even at the expense of “missing out” on things we want to do. Sometimes we slow down; sometimes mom has to take a nap on the weekends; sometimes playtime is with dad so mom can do a breathing treatment; and sometimes we all go for a walk to celebrate moving our bodies. 

Parenting with CF isn’t impossible, definitely hard, but not impossible. It’s about balance. 

What I want you to leave this blog post with is:

• You don’t have to do it all.
• You are human, and that’s OK. Give yourself grace. You are literally fighting a disease that was once thought to never be seen in years past adolescence.
• Ask for help — whatever that looks like for you!
• Your health HAS to come first, so you can be your best self as a parent, an employee, a spouse/partner, and for yourself.

Cheers to shattering glass ceilings and seeing a future, despite what we once believed about cystic fibrosis. 💜

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