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.
Having to isolate from our loved ones after the birth of our first child -- right as the COVID-19 outbreak hit our community -- was doubly difficult, but with a little education, our support network came through for us.
As Evan's mom, I have to constantly decide where to invest my time, especially when it comes to providing feedback. So, when offered the chance to turn my survey fatigue into something that would actually make a difference and be less of a hassle to do, I jumped at it.
Having a baby spend a long time in the NICU is difficult. Here are some things I learned about how to deal with it.
Being a parent to a child with cystic fibrosis is hard. You need to hear from someone else in your shoes that it’s OK to grieve for the life you thought you were going to have with your child.
As a community, we are very good at masking and keeping a safe distance to reduce risk from germs. And just like we have highly effective therapies to treat CF, we now have highly effective vaccines to protect our kids from COVID-19.
My son, who is Black, has cystic fibrosis. It seems like just a normal fact of life, but I have become frustrated with having to convince doctors that he really does have CF. I hope that one day people of color won’t have to have the same experience.
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.
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.
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.