As I write this blog post, I’m recovering from a bout of double pneumonia, which followed a long stretch of being healthy since starting Trikafta® in 2020. To be exact, I started Trikafta on Feb. 19, 2020 — one month before the world shut down and two months before I found out I was pregnant (miraculously!).
I was diagnosed with cystic fibrosis at birth, following a life-threatening intestinal blockage. After overcoming that obstacle in the very early hours of my life, my childhood was filled with surgeries, drug trials, time spent doing treatments, hospital stays, and countdowns to that unnerving life expectancy age my doctors talked about.
At the same time, my childhood was normal. I enjoyed school, participated in sports, and spent time with friends. Being the type-A person that I am, I even planned for my future, not knowing if that future would exist. I went to college, earned a degree, started my career, and built my own life.
Fast forward several years, my husband and I started the journey to grow our family. One year and a few rounds of fertility treatments later, we found out twins were on the way! We then found out we were expecting again (surprise!) when our twins were just 9 months old. Today, we have three healthy girls under 3. Life looks nothing like I ever thought it would, but it’s everything I hoped for. My husband and children are my whole world.
I also continue to work full time, which brings me to how our family balances life while making health a top priority with all three girls in full-time daycare — because even a minor cold can turn into something much worse for me (case in point, how I started this post).
- Masks and distance. Masks were a thing in our house before the pandemic brought attention to them. Personal protective equipment has always been required for CF patients and our visitors in the hospital to minimize the spread of infections. So, when the pandemic started, it was a no-brainer and non-argument for us. Even before the pandemic, my husband was diligent about protecting us if he came down with anything. He masked and took measures to protect us and keep us healthy. And I do the same if the girls have something I’m concerned about.
- Hard decisions and transparency. The pandemic brought a lot of people together, and it divided others. My little family had to make hard decisions on both sides. We made decisions to stay home when someone warned us about a little sniffle. And, at the height of the pandemic, we made hard decisions to keep only those who tested and were vaccinated in our bubble. Today, we let others know when the girls have even the slightest cold (they often have runny noses), and we appreciate that information from other families in return so we can make informed decisions. We love our community of people and want to be with them — while staying safe.
- Hand washing … a lot. And teaching the girls about the importance of washing hands. At the age they’re at, we still have a lot of teaching to do, and they still have a lot of learning ahead of them. But give them a bucket of soap and water, and they are entertained for hours. We also appreciate when visitors wash their hands when they come over.
- Changing clothes. The girls’ clothes get pretty dirty at daycare. Food, paint, drool, snot … you name it. Off the clothes go!
- Baths. Similar to hand washing, it’s so important to “wash the day away,” physically speaking, to minimize the spread of germs in the house.
- Asking for help. I’ve had to become very comfortable with asking for help. Although it feels uncomfortable to me at times, it’s an important part of my life. Asking for help has allowed me to recover more quickly from illnesses, spend quality time with family, and find moments of rest in our chaotic life.
- Most important, having support. They say it takes a village to raise children, and that is true. It also takes a partner who goes above and beyond without any questions asked. My husband is my rock. He knew what he was getting into when he married me, and that was well before Trikafta. He stepped into the role of husband and father fearlessly, and I am forever thankful for his love of our family and what he does every day to keep us safe.
All of that, along with eating our veggies and having a whole lot of grace is the equation to a solution that is not black and white, but one that makes sense for our family. We don’t do all of it perfectly, but we do it together.
(I’m dedicating this post to all the people with CF who want to become parents, who are expecting parents, who have experienced struggles and losses, and to those who are parents today. And to our communities of support — family, friends, colleagues, neighbors, teachers/childcare providers and more — thank you.)
Interested in sharing your story? The CF Community Blog wants to hear from you.