When Zoie was born in 2011, she was whisked away for testing. The doctors and nurses knew something wasn’t quite normal, but they weren’t sure what. Zoie was our first beautiful little girl -- Zoie, meaning life. A few weeks later she would be diagnosed with cystic fibrosis and other genetic diseases that would affect her life forever.
When we first heard the words cystic fibrosis, I was sitting at my desk holding 3-week-old Zoie, studying for my master’s degree in Special Education. Her pediatrician called and shared the devastating news over the phone. A newborn screen had detected CF, and we would need to follow-up with Children’s Hospital Colorado Pulmonary Clinic for a sweat test. The feeling I had that day was heavy. My heart literally sank, and my chest caved in. The tears wouldn’t stop. It’s a sad, lonely, and desperate feeling that no parent should have to feel.
Zoie’s sweat test confirmed she had cystic fibrosis, a genetic disease affecting her lungs and digestive system. Over time we would soon become experts on this disease that we had passed onto her but knew nothing about.
I remember the first few years of Zoie’s life being a blur, feeling a thick fog hang over us, and really, just trying to survive. We spent a lot of time as a family at Children’s Hospital Colorado both at outpatient clinic visits and being inpatient for several sicknesses and surgeries. We were slowly learning how to care for someone with CF, continue to take care of ourselves, enjoy this life we had been given, and start to teach our support system and the world what Zoie needed to live her best life because we were her advocates.
As a parent, when you’re struggling yourself, it can be really hard to also teach your friends, family, and community what your baby girl needs to thrive and live her best life. I took to social media as an outlet, and I started a blog with the hope that I could educate those around us. I started to be an “open book” about what our good days, our bad days, our tired days, and our happy days looked like.
I wanted everyone to know that questions were encouraged rather than making assumptions, and I was determined to teach the community in a loving way.
Cystic fibrosis for our family meant feeding tubes, extra salt, vitamins, and a life-changing drug called Kalydeco®. It meant visiting Children’s every 3 months and becoming wonderful friends with our lung doctor. Cystic fibrosis meant lots of weight checks and counting calories for weight gain. It meant no smoke around us and becoming homebodies in the winter months. Cystic fibrosis meant becoming expert hand washers, holding my breath at the sound of any cough, and despising nasty germs. It meant getting “vesties” twice a day to shake Zoie’s mucus out. It meant teaching every single person around us (as we were still learning ourselves) how to not get Zoie sick and how to best support our family. Luckily for us, we have one of the best support systems around.
Having CF in our life has taught us what it means to live, really live -- living each day as if it is your last. In a world that can be mean and cruel, we’ve seen that kindness, empathy, and compassion outweigh any of the bad things.
Zoie is 10 now, and she is healthy, happy, joyful, and thriving. She spends her days enjoying her two little sisters, going to school, riding her horse, and being surrounded by love.
I take myself back to those first three years of her life, and I wish I could have told myself to hang on tight, that everything was going to be alright, and to just trust the process.
We didn’t have a CF manual at that time, and we still don’t, but it’s amazing what a little time can do. Our family has come so extremely far in our faith and our ability to enjoy the little things, and we owe that all to our sweet Zoie girl.
Cystic fibrosis can be hard, but if you surround yourself with the right people and lean on them, you won’t feel so alone, and you will find a community filled with love.
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