Cystic Fibrosis. CF.

2 words I never wanted to hear from our pediatrician.

Brian had just returned to work after his too short paternity leave and I was with my mom at Brianna's 12 day weight check. We knew the newborn screening results would be back any day. I was holding my breath. That Sunday night I had cried. Sobbed actually- on my Inlaws couch on the eve of Brian's work return. What if the Dr called and I had to call Brian with bad news? How would I ever dial the phone? And here I was, 2 days later, waiting for the scale to register my baby's weight. Was she gaining now instead of losing? She had lost so much and just wasn't gaining. In my mind if she was back to the 7 pounds she was when they first laid her on my chest, she'd be ok. So I stood, staring at the digital numbers on the scale, as they registered.

7.00lbs.

I breathed a huge sigh of relief. Fate had spoken. She would be ok!

Or so I thought.

It was only a few minutes later that the dr walked in and smiled. Did her exam. Then turned to me. The newborn screening results had arrived the day before. They found CF. "Oh." I replied. "So now we do bloodwork to see if she has 2 genes?" I was still holding on to hope. "They found 2 genes. She has Cystic Fibrosis." My mom looked over at me. She grabbed my arm. I just stared at the dr. I was no longer listening. She was talking. She was saying a lot. I still have no idea what she was trying to tell me. In my mind was only one thought. The dr was mid sentence when I turned to my mom- my rock- and the first sob squeaked out. "I have to tell Brian... How am I going to tell Brian??" I still cannot pull into the pediatricians parking lot without remembering that phone call.

What is CF?

CF is taking enzymes every time you eat fat or protein- needing reminders at every meal because even though you've been taking them 6x a day since you were 2 weeks old- you still don't remember.

It is doctor's appointments. Lots of them. Missing school. Needing to catch up. Some teachers understand- some don't.

CF is blood work. Bimonthly liver levels. Yearly glucose tolerance tests to make sure you don't develop CF related diabetes. Yearly liver ultrasounds because was that fatty liver that was picked up caused by CF related liver disease? Only time will tell.

It is staying away from germs. Protecting yourself as much as you can- while still living the best life you can. CF is avoiding lakes. Hot tubs. Misting machines. It is chest therapy and nebulizers 4x a day when you are sick.

CF is making new friends and not wanting to tell them why your cough lasts so long. Or why you change your seat when someone seems sick. Or why you wipe your desk before every class starts. Or why you stop at the office to take pills before lunch.

It is changing medications because the brain fog and sad feelings have gotten too strong.

CF is mom on the phone in line to meet Minnie Mouse in Disney World because the insurance isn't covering your modulators the way they used to.

CF is learning patience. Resilience. Empathy. Finding joy in the small things.

It is hope. The constant and ever present hope that one day, those two letters I never, ever, wanted to hear at the pediatricians office will stand for

CURE FOUND.

Thank you in advance for your continued support, prayers, and love.