This is what it looks like to have CF. Yes, there are struggles, hospitalizations, illnesses and surgeries. There is also a lot of hope for a long, bright future!
The initials “CF” have forever changed our lives. The highs and lows make up our story. We have a wonderful group that dedicates each and everyday to make my son the healthiest version of himself. Teachers, nurses, doctors, pharmacists, RTs, therapists and of course family and friends.
As my child is aging, I’ve noticed CF is always in the background and his understanding of the disease makes it more difficult to bear. Hope, grace and peace are my daily prayers for my family and others affected by this game changer.
It’s not the life we chose, but it has grounded and changed my heart forever. The pride and love I have for our family is what keeps me going– giggles, tears and emotions that I didn’t know existed.
– Kelly, Texas
I do not have CF , but I am the stepfather of a daughter with CF. She wouldn’t use that term since I am the only Dad she knows. Living with a child with CF is a constant mental struggle. There are so many great days opposed to bad days that your mind at times fails to have the ability to settle itself. I have not been in Sklar’s life in its entirety. Her mother went through the back to back hospital visits and the stress of finding out about her illness in the beginning. But I have been here enough years to watch her go from a small struggling CFer to the amazing little girl she is today. I am absolutely in awe of lack of fear for death she has. Whatever it is she has the spirit high enough to lift a whole house. We thought as we watched her grow up over the years that she would eventually do well enough not to have the constant supervision and care. We couldn’t have dreamt in our imaginations just how well she would be doing. It has literally been years since we had a hospital stay. And her lungs are improving. We give a lot of credit to her current condition in our change in lifestyle. We moved from the city, near Flint, Michigan, to up north rural in the woods living. Her spirit, her physical health, her attitude all changed in such a way that we could never change it back. It has been an amazing journey. Times are difficult being the stepparent , but only because of how I feel about her bio dad not caring. It’s a hard struggle with CF , but its worth every second. Summer 2015 family went to Give Kids The World in Orlando and had the times of our lives !!! Thanks GKTW
How CF Has Affected My Life and Family
Cystic Fibrosis is a disease that affects 30,000 people in the United States. On paper, it affects the respiratory, digestive, and reproductive systems. In reality, not only does it affect physical health, but it also affects socialization, mental health, and relationships. Sometimes trying to balance good health and living life means making difficult choices.
Because of my disease, I have learned perseverance. The fact that I have CF has no effect on my achievement. I am an eagle scout, an accomplished musician, and an honor student. These have not come without challenges, such as getting school work done in the hospital, or being so sick I can not practice my trumpet, but I have learned that if I really want to do something, I can find a way to do it. I look at obstacles as challenges as opposed to deterrents. I have learned that the only way to fail is to quit.
My disease also takes its toll on my family. We have learned lessons in sacrifice and flexibility. I am one of four children, two of which have CF. When my brother or I are in the hospital, we have to give up one parent to stay at the hospital and the other parent takes care of the other three. When we have family outings, we have to consider our daily treatments and exposure to germs. We have to get creative with managing treatments and our activities.
The lessons I have learned from Cystic Fibrosis are invaluable. Given the option to have never had the disease, I would probably keep things as they are. I enjoy my life, and I would not want to change a thing, because my life is special and unique to me.
Share Your Story
Anytime is a great time to tell your CF story! We’re listening… change someone’s life with your story. Fill out the form to share your experience.