Raising a child with Cystic Fibrosis (CF) is not an easy road for the parents or the child. There are many, many sleepless nights, long days, hard hours, frustrating conversations and lasting realizations that a parent and the child go through. Over time and after many different efforts and trials, a routine is formed and as that routine becomes normalcy, the hardships become a little less hard and frustrations turn more into optimistic outlooks. You as a parent realize that you have been handed this challenge and that your soul purpose is to make sure your child is safe, happy and as healthy as they can be.
I can recall many a time when I had to face a scared and angry child who wanted nothing to do with her treatments or medication. I had to show my daughter that even though it wasn’t fun, it was a must and priority. Of course, trying to get a small child to understand that if she doesn’t do her cupping routine or refuses to take her enzymes or use her nebulizer that she could end up in the hospital, in pain and having done harm to her body is nearly impossible. Thankfully as she has grown, she has become more understanding and accepting of her CF but there are still those times where frustration can get the better of both of us.
Each person lives with Cystic Fibrosis differently and severity of CF can vary widely. Because people with CF are at an increased risk of infection and cross-contamination, having a child with CF can make a parent and the child themselves feel isolated and sometimes depressed. It’s so important to create as normal a life as possible around your child or family member with CF. Administering medications, keeping them on the proper diet and doing at home therapy as much as possible to keep them healthy is such an essential part of their well-being as well as your own and it will certainly help to provide the best environment for your family as a whole.
As our daughter continues to get older and we as parents continue to learn on our journey as CF caregivers, I can offer a bit of advice to those just entering this life. Be patient, talk softly, be understanding, ask questions, seek out resources, be supportive and have faith. Cystic Fibrosis IS scary and it IS hard, but it’s ALSO controllable and Walgreen’s CF Champions “Navigating The Journey Together” program is here to help guide you along the way.