Caring For Caroline // We Got This

Nap time is nearly over for miss Caroline. Lately I’ve been spending her naps working with insurance, filing disability forms with the state, talking to the pharmacy about drugs and paying bills. Most days CF really is just part of our world and we can keep it at the back of our minds. But days like today, answering questions like “please indicate the beneficiary’s disability type” and “is the beneficiary’s disability considered permanent” feels surreal. It’s still so odd that I answer yes to questions like this about my daughter. Every part of this journey has given me an overwhelming sense of compassion for parents and caregivers who have children with disabilities. I am quickly learning raising a child with a disability is also about being a nurse and an advocate and a researcher and a doctor and a pharmacist. Sometimes I still can’t believe how much I have learned in the past four months. It really is incredible, and I know I’m not alone. I’m so inspired by all of the other parents and caregivers I have connected with through cystic fibrosis. We are fierce! We are courageous. We are so brave! And our babies are everything. They deserve every opportunity to be happy and healthy. So as I sit here on my fifth phone call of the day, I got to say, I don’t feel alone. I know somewhere out there are other parents doing exact same thing. If that’s you, you got this! We are in this together.💜