I recently was diagnosed with a type of attention deficit hyperactivity disorder, which helps explain why I sometimes didn’t keep up with daily care. By taking ADHD into account, I’m managing my cystic fibrosis better.
As my daughter became a teenager, it was difficult for me at first to let her manage the responsibilities of her cystic fibrosis care on her own. It took going to see a therapist for me to wrap my head around the fact that it wasn’t my place to nag her about doing her treatments anymore.
A sudden health setback turned my eventual lung transplant into an immediate one. Although the transplant didn’t go exactly to plan, my preparation helped the process go more smoothly.
I wish people knew that even if I don’t look sick, I still struggle with the mental and physical aspects of cystic fibrosis. Even my family and friends don’t truly understand what this disease does to your mental health.
We knew nothing about cystic fibrosis when my first daughter was born with the disease. We quickly became experts and took on the responsibility of educating our friends and family about what our daughter needed to stay healthy and thrive.
My daughter was born with cystic fibrosis and with an aversion to food. Teaching her to enjoy meals has been crucial to helping her grow and stay healthy.
Although the initial diagnosis for cystic fibrosis seemed to elude our doctors, we knew in our hearts that our son had cystic fibrosis. When we advocated for and got a CF doctor, we began a relationship that became a partnership of mutual trust and respect.
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.