May 5th we will celebrate a special birthday.
A special life. A journey never expected.
May is also the national awareness month for Cystic Fibrosis.
Alexandra was born 11 years ago and at 2 weeks old the doctors diagnosed her with a severe, genetic lung disease called Cystic Fibrosis. As a new mom when I received the call she had tested positive for this disease 3 separate times, in the hospital newborn screen and 2 newborn doctor visits, they suggested we go have a final screen at Children’s Hospital to rule out this diagnosis. They warned us about many false positives.
Hanging up the phone scared and concerned, I googled “Cystic Fibrosis”.
Three days later we headed to Children’s in the Cystic Fibrosis and Pulmonary ward in Denver. After short testing they did confirm she had this disease. A team of four doctors met with us in a small, isolated room to inform of us the next steps and the process of raising a child with Cystic Fibrosis. Although I knew, I had googled it. I knew the life expectancy was 37. I knew she would one day most likely need a lung transplant. I knew she would never be able to digest a meal without swallowing her enzymes first, and she was at strong risk for Diabetes since her pancreas was ineffective. I knew she would need nebulizers, vest therapy, and several medications every day. And I knew before they told me that “some children diagnosed never make it through childhood”. I knew the risks. However in spite of my googling, and the doctors explanations I already knew she would touch many people. I knew she would make a difference. I knew she had a purpose. I knew she was a fighter (after all red heads are known to be!). And I knew I was chosen to be her mother.
For the past 11 years we have watched her grow healthy and strong. Her weight always a struggle, at age 3 they wanted to give her a feeding tube surgically inserted into her stomach. She beat the odds and gained the weight she needed without it. She was hospitalized only once when she was 4 for precautionary reasons. Today she has over 90% lung function which we know isn’t perfect, but it’s perfect for her at age 11 with this disease. She visits Children’s Hospital at least 4 times a year for testing, x-rays, blood drawings and more. She dances/tumbles/competes more than 16 hours a week keeping her lungs as strong as possible, something we never knew if she would be able to do, and she loves it.
As we celebrate this birthday, this childhood milestone, we couldn’t help but remember those days after she was born and diagnosed. We know this special day is a small yet a significant celebration in her journey and life with Cystic Fibrosis. Happy 11th Birthday sweet girl.
About Cystic Fibrosis: http://www.cff.org/AboutCF/











