When my daughter, Claire, was in the neonatal intensive care unit, I was lead counsel on a case that had made its way to federal court. I prepared for the case at Claire’s bedside between breaks of the nurses cycling in and PICC lines beeping around me. Somehow I…
Recently, an expectant father reached out to me on social media after receiving a prenatal cystic fibrosis (CF) diagnosis. He told me that he was so grateful to our family for sharing our journey and giving other families hope. These types of messages are my favorite. The truth is,…
The ski instructor looked at me puzzled and took another look at our daughter. “What does she have again? She looks fine.” This is a common response when I first tell people Claire has cystic fibrosis (CF). Most people just see a vibrant 4-year-old when they meet her. What…
The day my husband and I recited our vows at our wedding, I pictured our perfect future together, just as I had many times before: two kids, ideally a boy and a girl, and a house, maybe even with a white picket fence. Ah, to go back to the days…
When I was pregnant, we learned that our unborn baby likely had cystic fibrosis (CF). I immediately fell into a deep depression. I didn’t talk to friends and family. I felt like no one could possibly understand what I was going through. I became agoraphobic, only leaving my house…
As the clock strikes 10 p.m., my daughter Claire’s used nebulizer cups are sitting by the sink, ready for their nightly sterilization routine. All I want to do after a long day of working and taking care of two small children is go to bed, but as a cystic…
Every night when I came home from caring for our daughter in the neonatal intensive care unit (NICU), I would gather our mail to sort through it. It was a task I used to distract myself and make life seem a little more normal. As the holiday season approached, I…
“How is this possible? We did everything right!” I couldn’t comprehend what my daughter Claire’s pulmonologist was telling me at her quarterly cystic fibrosis (CF) clinic visit. He explained that her most recent chest X-rays showed signs of disease progression. She was only 2 years old. Up until that…
My chest tightens and I feel a lump in my throat as I try to race past the hospital where my daughter was born. Soon after Claire’s birth, she was transferred by ambulance from this very hospital to our regional children’s hospital, where we spent the next 68 days…
“Intense.” That was the word our friend used to describe our daughter’s daily cystic fibrosis (CF) care routine. We were on the last day of a weeklong group vacation, spending every waking moment together. Prior to this trip, the only people who were familiar with the intricacies of our…
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