As a 47-year-old with CF, I have learned a lot about how to best manage my life with cystic fibrosis. I want to share my insights and tell parents of children with CF certain things I have learned along the way. So, here are the top five things I would tell parents whose child is newly diagnosed with CF.

1. Be your child's advocate. Don't be afraid to speak openly with your child's care team and ask questions about treatments, side effects, procedures, or anything else you are unsure of. You should never leave your child's clinic visits with questions about the care they are getting. Doctors can't read your mind, so you need to communicate with them. If you feel like you are not being heard, say so. If your child sees you advocating for them, they will be far more likely to be their own advocate in the future.
2. Try not to pay too much attention to statistics. You no doubt Googled everything about CF when your child was diagnosed, including life expectancy statistics. When I was born, statistics showed I wouldn't live past 10 years old. Well, like I said, I'm 47. I know people in their 50s and 60s with CF. Statistics can't take everything into account and each person with CF is unique. Advancements are being made in CF care and the search for a cure in leaps and bounds. Yes, it's hard to not think about statistics. But instead, try to focus on your child's unique CF experience and don't let statistics define your child's life.
3. Don't let your child skip treatments. Every child will want to skip treatments. I went through it myself and I have seen it in a lot of teens and young adults. We just want to be “normal,” just like most teens. I know it's hard. I've seen it on my own mother's face. But, if your child ends up in the hospital, you're going to feel guilty for letting them skip treatments. If you're struggling to get your child to do treatments or take medications, talk to your care team.
4. Help your child live as “normal” of a life as possible. Keeping your child in a bubble may make them feel resentful, depressed, and isolated. If your child's doctor says it's okay for them to play soccer, run track, take dance lessons, etc., then let them. Being active can help them stay healthy. It could also help motivate your child to do their treatments -- they will want to stay out of the hospital and not miss out on fun activities. Fear of missing out (FOMO) can be a powerful motivator for children and teens.
5. Take care of yourself. Children emulate their parents. Practice self-care to set a good example for your child. Being a CF parent is hard. It can be frustrating, exhausting, and worrisome and it's okay to take a time-out and regroup. You have to be emotionally and physically healthy in order to take care of your child. You could exercise or do yoga while your child is doing treatments. Show your child that you have to do things to stay healthy too.  

I understand that being the parent of a child with CF can leave you feeling isolated, but please know that you are not alone. Reach out to other CF parents or patients for support. Share tips and stories with people who know what you are going through. We are all in this together and I hope this list helps you along your parenting journey.