As a mother with cystic fibrosis, I have learned to prioritize my mental and physical health in order to stay healthy for my two young daughters. I have invited them to come alongside me on my journey as we cherish the little moments in our lives.
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Art has been my therapy throughout my life, but it took on new meaning when I had a daughter with cystic fibrosis. Now creating artwork helps carry me through the stress of CF life.
Although I don’t consider having a chronic illness like cystic fibrosis a good thing, I accept it and I think others should, too.
I grew up thinking I would never be able to have children because of my CF. While advancements in treatments have made motherhood a possibility for many, I ultimately made the painful decision to not have children.
My brother, Josh, who has cystic fibrosis has been through more struggles than anyone I know, but he has always kept a positive attitude -- even while awaiting a lung transplant. This outlook on life inspires me and helps me see the best case in any outcome.
Our hearts stopped when we first heard that our grandson, Jase, had cystic fibrosis. We didn't even know what it was. However, we have learned a lot along the way and have gotten used to rolling with the ups and downs of this disease.
When my wife convinced me to undertake a hike up to Angel's Landing, I pictured the physical challenge of it, not the friendship we would develop with another couple on the way up.
After starting Trikafta, I decided to try running again, and I grew to love it. Because of COVID, I had to conduct my own races in 2020, but now I have joined a running group and am preparing to run my first marathon at the end of September.
I went from knowing nothing about cystic fibrosis to having the three most important people in my life diagnosed with the disease. I was shocked to learn that not only did my two children have CF, but also my husband had it.
My daughter, Ellie Frances, has faced a host of medical problems. Living with cystic fibrosis helped prepare me for the difficult decisions I've had to make along the way.