We couldn’t wait to take our daughter home from the hospital. But when the time finally came to bring my daughter home, I began to lose confidence in myself as I tried handling all the medications and formula. With time, I built a great routine for my family and learned some tips and tricks to share with other new parents.
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Having cystic fibrosis has been a double-edged sword. CF has caused suffering, but it also has given me the perspective to embrace my life.
As I continue to realize the benefits of Trikafta® and my daughter grows up and needs me less, I feel as though I’m losing key parts of my identity — being a person with cystic fibrosis and a mother. However, I’m also finding I have room to let myself grow and explore different sides of myself.
Learning that my daughter has cystic fibrosis has been a struggle for me and my family, especially as I deal with postpartum depression.
After decades of identifying myself as Monique, “the girl with cystic fibrosis,” I didn’t know who I was anymore after Trikafta changed my health for the better.
I was not emotionally prepared the first time I saw my daughter in her vest. But now, I am thankful to have this device as a part of our daily routine to keep her lungs healthy.
At first, it was easy to get my son to do his cystic fibrosis treatments. But as he got older, he started to hide his medications, rather than take them. I finally learned how to get him to see the importance of taking his medications.
In the summer months, some things require special attention for people with cystic fibrosis.
Adjusting to life after my newly adopted son’s cystic fibrosis diagnosis has been challenging at times, but I will do all I can to support and advocate for him.
Fitting school, work, and CF treatments into my daily routine is tough, and when I push myself too far, my performance and health suffer. I’m determined, however, to keep going and find a balance that is right for me.