Imagine getting a $2.5 million hospital bill within days of putting in notice to quit your full-time job. That was the exact scenario I faced in February 2019. At that time, my daughter, Claire, had just been born with cystic fibrosis (CF) and spent 68 days in the hospital.
Even though I already had one child when my daughter, Claire, was born, her birth was a pivotal moment in my life. I wasn’t just a mom anymore; I was a cystic fibrosis (CF) mom. With that title comes a lot of responsibility and weight. For me, it also…
It started when I was pregnant. Halfway through my pregnancy, we were faced with the possibility that our daughter Claire would be born with cystic fibrosis. This news brought a physical and emotional sensation like I’ve never felt before. I didn’t just feel that she would be born…
When I hear a cough in public, my body tenses up and I immediately start scanning the room to see where it originated. (As a cystic fibrosis (CF) mom, I can usually find the source within seconds.) Then I try to make sure my daughter, Claire, who is 4…
Most parents of children with rare diseases spend their lives trying to ensure that their child outlives them. That usually means taking part in fundraising to support the development of new treatments. But even if a child lives long enough to see a therapy come to fruition, this can…
Every time my phone rings and shows the hospital prefix number, my heart skips a beat, there’s a lump in my throat, and I feel paralyzed with fear. Do I answer it or let it go to voicemail? My mind races over all the things that the doctor might tell…
As I drive through the fast-food line for the third day in a row, I can’t help but feel like a bad mom. Am I really feeding my kid fast food day after day? Would you believe I’m actually trying to maintain her health by feeding her this type of…
“Direct admission is a possibility.” These words from our daughter’s pulmonologist have been hanging over my head and lingering in my heart for weeks. Today, our daughter, Claire, is scheduled to undergo a bronchoscopy, a fairly routine procedure for people with cystic fibrosis. Based on the outcome, she may…
I hate to admit this, but retail therapy is a coping mechanism I use when I’m stressed. It can be as simple as treating myself to a new facial product, but the expenses can add up quickly. Before I had my daughter, Claire, I didn’t worry about it much. I…
Note: This column describes the author’s own experiences with Trikafta (ivacaftor, tezacaftor, and elexacaftor). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Recently, we experienced a miracle. Or at least we thought it would become our miracle. In April,…
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