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DEFEAT CF

one family's decision to choose hope over despair

View the 2017 Newsletter

Bridge Over Troubled Waters

Like a batter learns to anticipate the last minute curvature of a curve ball, parents raising a child with cystic fibrosis (CF) must learn to navigate disease progression.


At a recent clinic visit, we learned Paige's lung cultures have progressed to chronic infection with the mucoid form of Pseudomonas aeruginosa. Scientists know this form of the bacteria is associated with a more rapid decline in lung function, resistance to antibiotics, more frequent hospitalizations, and decreased life expectancy. It's times like this when I realize I need to find hope all over again. As I begin my search, the following story comes to mind...


Some years ago, a work client of mine told me his 30-something year old son committed suicide - leaving a wife and 2 young children behind. Months after hearing his story, I checked in on him to see how he was doing. Amidst his grief, he said, “Ever since my son died, I feel like a dark cloud has been following me around. It makes me feel so sad and depressed. But just the other day, a thought came to mind: ‘In my 70-some years of living, I have never had a dark cloud like this over my head before.’ It made me realize how ridiculously blessed I have been. I would never have known this if not for the suffering I am going through now. Somehow knowing how good I’ve had it makes it easier to keep moving forward through this difficult time."


His words imparted the importance of finding blessings amidst the storms of life. Truth be told, our journey with CF has been blessed. At 15 years of age, Paige's lung function is normal and medications targeting her genetic mutation will become available in the coming year. Furthermore, we have a compassionate community of supporters around us who refuse to let us fight this disease alone. Acknowledging these blessings helps restore hope; my bridge over troubled waters.