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one family's decision to choose hope over despair

View the 2017 Newsletter

Hope for Newly Diagnosed Families

You are not alone. There are countless people fighting alongside you, and we will not rest until CF stands for Cure Found.

Only once in life have I felt a pain so intense it brought me to my knees and curled me into a little ball like an inchworm when touched. It was the day I answered our home phone and heard a nameless, faceless doctor tell me our daughter Paige has cystic fibrosis. After picking myself up off of the floor in complete despair, I wrote the following in a pretty little journal I keep for Paige:

“Today I lie here thinking of what to write...what profound statements can I make to my daughter the day I learn she has cystic fibrosis? I can’t say the diagnosis is a surprise; after all, I’m the one who made the doctor run the test. I can say hearing confirmation of the diagnosis has me doubled over gasping for air. I feel numb inside. I have heard people tell me I may have to watch my daughter die.

I am so sorry you have been chosen to bear a weight this great, Paige. My thoughts are everywhere. Part of me wants to hold and shield you, while another part feels a resolve to be firm and cut you no slack—as if it might prepare you for what is to come.

When I read about all of the additional therapies, drugs, and dietary guidelines we will now need to follow each day, I feel tired. I honestly don’t know if I have what it takes. As a working mom I already feel average at best, and now you need me to be better than average.

I hope and pray I don’t let you down, daughter. I am so scared of losing you, Paige. I don’t know if I’d be able to live without you. I will pray every night that God smiles upon you. I love you.”

For days, weeks, and even years following Paige’s diagnosis, I worried about the grave casualties she might face in her battle against CF; pneumonia, diabetes, intestinal blockage, lung transplantation, death. Haunted by the unknown, I started living life in fear of her death.

It wasn’t until I met an adult with CF in his 50’s that I realized I had a choice to make: I could teach my daughter to live in fear, or show her how to live with hope. Hope is having faith in things unseen. While I do not know what Paige’s future holds, I choose to live life knowing she will defeat CF.

There are many, many examples of people with CF following their dreams, getting married, having children, and growing old...and Paige is going to join them. Paige understands this is a battle that must be fought, but she also knows it is a battle she will win.

The journey with CF feels impossible at times, and definitely has bumps along the way, but knowing I do not walk this path alone gives me strength. Seeing the billions of dollars (yes, billions) being invested in cure-finding research, as well as the many new life-extending medications that have reached the market over the years, gives our family the courage we need to live a hope-filled life!

Big virtual hug!