5 years ago Connor was diagnosed with Cystic Fibrosis.
It's almost eerie how I can recount so many small details of "diagnosis day", which both seemed to happen in slow motion and on fast forward all at once.
The day after Christmas in 2013 our family doctor called late in the evening to tell us that Connor's newborn screen indicated "a marker" for Cystic Fibrosis. She asked us if we'd done any prenatal or genetic screening - and did Colin and I happen to know if we were "carriers of the Cystic Fibrosis genes". We hadn't, and no we did not know. We weren't to worry yet. We repeated the test the next day and several days later learned they yielded the same results. We'd gone from worried to terrified. Soon after a nurse from the Cystic Fibrosis Clinic called us to arrange a "sweat test". The gold standard, tell-all test. She said approximately half of the patients tested are healthy and the other half have CF. I didn't like those odds. The 10 days between Dec 26 and Jan 6 dragged on for what felt like forever. At the very least, this test would end the waiting.
3 years ago about this same time I packed Connor up on a very chilly day. I drove across the 520 bridge and noticed that the water was very calm on one side and the waves were almost crashing over the side on the other. Was this telling, I wondered? I turned on the radio to distract me. Passenger's "Let Her Go" had just started playing. It was so somber. I was already feeling very fearful and emotional. To this day I can't listen to this song without crying.
We arrived at Seattle Children's and I wondered if I'd never be back, or if this weird new place would become a second home. I tried to feel out which felt more likely, but I couldn't tell.
Connor was exactly 6 pounds on the nose which the lab tech told me was the smallest child he'd ever known to be able to gather enough sweat from to preform the test, so it might not work, but we'd give it a try! This was not comforting. After about 45 minutes the tech had gathered exactly enough sweat. The very minimum needed to run the test. We'd have an answer today.
Connor and I headed home and that same somber song was on the radio. The sky had turned very gray while we'd been inside the hospital.
I hadn't been home very long before I got "the call". We weren't supposed to learn the results until a few hours later, but the lab had been miraculously quiet that day. I was at home alone, and now armed with a bomb to drop on those so very close to us also wondering and waiting.
Diagnosis day was one of the most difficult, painful and fearful days of my life. I knew so little about CF, other than a girl in my high school class who had lived off of an oxygen tank, was thin as a rail and very pale had died from it our junior year.
Diagnosis Day will always be remembered as a cold, dark, fearful and painful day. But, today, 3 years later, the sun is shining and I can reflect on how much strength and love Connor has brought to my life, my family, our friends and our community. This journey has shown us that our village is amazing and truly awe inspiring. We have a community of people who continue to rally around us and support us. We wouldn't be where we are today without you. So thank you.
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