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.
The unexpected ups and downs of having a son with cystic fibrosis sometimes makes me feel like I'm on a game-show obstacle course, dodging punches and avoiding the mud pit. It helps to do my research, keep lists, rely on my support team, and take some “Mommy time” to get through life's daily challenges.
It's been a whirlwind year since my son was born and diagnosed with cystic fibrosis. Despite the surgeries, hospital stays, and challenges of living with the disease every day, I'm thankful for the people who helped pave the way.
I am anxiously awaiting the U.S. Food and Drug Administration's approval of Trikafta for children with cystic fibrosis ages 6 to 11. To prepare, I'm doing everything I can to ensure my 11-year-old son can take advantage of the medication as soon as it is approved.
When my husband got COVID-19, we had to set up strict rules and procedures to keep our adult daughter, who has cystic fibrosis, safe.