From Shaking Hands to Unshaken Hope
November 17, 2016
Topics: Riley Kid Story
Our daughter Emily is a vivacious 3-year-old who loves Minnie Mouse, playing soccer and dancing to Christmas carols. While her holiday dreams are filled with snowflakes and presents, my husband and I dream for a season free from respiratory infections.
This past August marked the three-year anniversary of Emily’s cystic fibrosis diagnosis. Cystic fibrosis is a genetic disease that affects the respiratory and digestive systems of roughly 25,000 Americans. It is chronic, which means that my daughter will live with it her whole life, or until a cure is found.
I acutely recall the moment my husband and I heard the surprising news of Emily’s diagnosis and the feeling of “Everything has changed.” I remember our first day in Riley’s cystic fibrosis clinic like it was yesterday. I cried in the parking garage and did my best to nurse my infant daughter in the waiting room. And then it happened: the moment that is forever etched in my mind.
Dr. Stephanie Davis, our pediatric pulmonologist, took my shaking hands, looked me squarely in the eye, and said “Your daughter is going to live a long and full life.” She went on to say that it was her job as a physician and our role as parents to help enable this.
I’d be lying if I said that just like that, all the fear and the unknown that I’d been harboring melted away. It didn’t. But it lessened considerably, and by the time my husband and I left the clinic many hours later, we felt like we could do this. Yes, we were overwhelmed. Yes, there was a heck of a lot of information about diet, medication, and daily chest physical therapy that we still needed to digest. Yes, we would no doubt face ups and downs as a family. But with a strong drug pipeline and an aggressive-yet-compassionate doctor on our side, we could do it.
We are hopeful that Emily’s lungs will stay healthy this winter, but we also know that should she need extra help, Dr. Davis and the Riley team will be there day and night to offer guidance, support and a healthy dose of bacteria-fighting antibiotics. We are so grateful to call Riley Hospital our own. We thank every person who keeps Riley Children’s Foundation in mind this holiday season.
Every bit counts in our quest to give Emily a future that is merry and bright.
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