As a CF mom, I'm always in a state of wonder about whether the choices I'm making are the right ones for my son with CF and the rest of the family.
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After a childhood spent running, I had largely given it up by the time I became an adult. But five years ago, it became my outlet. CF and COVID-19 temporarily sidelined me, but as long as there is air in my lungs, I won’t ever give up.
I thought my exercise capacity on continuous oxygen would decrease. Thanks to the support from others and high-intensity interval training, my exercise capacity actually increased.
Although I had my doubts, I was able to hike the Oregon Coast Trail and learn about myself while doing it.
There are many ways you can support a family with a child or children with cystic fibrosis. Educating yourself about the disease and its treatments and offering to help without being asked are some of the best ways you can show you care.
My son’s CF diagnosis created an unexpected challenge while breastfeeding him. But through practice, help from our care team, and support from the CF community, we found the perfect balance to meet his nutritional needs.
At times, my pediatric CF care team told me about the possible negative outcomes of my cystic fibrosis. Their gentle support helped prepare me for unexpected good health, and is one reason why I was able to qualify for the Boston Marathon.
My mom was always my biggest advocate and most selfless caretaker, but she went above and beyond when she also took my friend under her wing.
When my wife and I learned that our son, Benny, has cystic fibrosis, we were concerned about how we would fit his treatments and care into our daily lives. We are grateful to have not needed to make many major changes like we anticipated, thanks to having a village around us and finding ways to make treatment time more fun.
Learning that my son, Rowland, has two rare cystic fibrosis variants and is currently unable to access highly effective modulator therapies was emotionally challenging and isolating for me. Then, I was introduced to another mom who could truly understand and relate to our experience. I am so grateful for not only the support we can provide to each other, but also for the friendship that grew from our connection.