For years in Kansas City, Kan., our local Cystic Fibrosis Foundation chapter held a fundraising event called the Breath of Life Ball. My sister and I attended a few times with our parents, a huge treat for us because it was held at a fancy downtown hotel with amazing food -- and we were all about the food. We got to dress up and drink all the Shirley Temples our preteen hearts desired.
One year, I think I was around 12, the fun drained from the evening as I learned about the median life expectancy for people living with cystic fibrosis.
I distinctly remember sitting with my sister at a table in the back of the ballroom. Each year at the event, after guests had been fed dinner and a cocktail or two, a video played on the big screen, intended to pull at heart strings and loosen purse strings.
That year, the video presented me with information that, somehow, I hadn't ever heard: the median life expectancy for someone living with CF was (at the time) around 40 years old. As a 12-year-old, 40 still seemed pretty far off, yet I knew that my parents were creeping towards 40 and they didn't seem that old.
I sat there and tried to look unaffected, aware of my 10-year-old sister next to me, wondering if she had heard that same sentence. Meanwhile, my mind was whirring with all the implications of this new information.
I didn't talk to my parents, my doctors, or my sister about what I learned that night. It seemed too delicate a conversation, like if we talked about it, we would breathe it into being. Instead I internalized it.
Through high school, college, my first job, and into adulthood, I planned my life around me -- my interests, my education, my travels, my whims. I knew I wanted to get married -- that, I had always felt - but a mother? That title wouldn't be mine.
My junior year in college, 2013, I met the man who would become my husband, Kory. At one point very early in our relationship, I was thunderstruck by the overwhelming realization that I never wanted to not know him. Inevitably, my mind wandered toward our life in the future.
It wasn't long before I knew on a visceral level that he would be an exceptional parent, and I began to doubt my conviction that parenthood wasn't for me. Because now it was about not just me, but us.
My internal tug-of-war was anchored on one end by wanting a family with Kory and on the other end by doubting my longevity. I wrestled with feeling like it would be selfish to become a mother because I didn't think I would live to old age, or at least, I assumed I would be in chronic, poor health; it twisted my heart to think about leaving our potential future children motherless earlier than would be fair.
A couple of years into our relationship, hope began to mount in the CF community about the introduction of a new generation of therapies called modulators. In late 2019, after much excitement and anticipation, Trikafta® was approved and made available to me.
I began taking Trikafta in December 2019. I was at the dentist when -- to my embarrassment -- my first dose started taking effect. The classic purging of the mucus began, and I couldn't stop coughing. Over the next couple of months, my lungs remained clearer than they have been my entire life. It was a strange and wonderful feeling.
I had heard about people in the clinical trials “feeling like they don't have CF anymore,” but I couldn't imagine it or believe it, until I felt it myself. It was happening to me -- I felt like I no longer had CF.
Then, I began suspecting that something else was different with my body in February 2020, although I didn't think much of it because everything was changing since starting Trikafta. I mentioned my breast tenderness and, ahem, enlargement to my mom and she suggested I get a pregnancy test. I rolled my eyes, but suspicion lodged itself in my mind, leading me to buy a two-pack of pregnancy tests the next day on the way to brunch with my husband.
The test was positive. What?! Kory and I were in total disbelief -- thrilled, but just … what?! We had not done any kind of fertility treatment.
That week was surreal as we anxiously counted down the days until my first sonogram. Partway through the exam, the sonographer paused and excused herself while she stepped out for a moment. Oh, no. Something must be wrong. We've both seen enough movies to know it's never a good sign when the sonographer steps out without explanation.
She came back in the room with a more senior colleague, and our anxiety intensified. We stayed mute as we waited for the other shoe to drop. “So, we're seeing two sacs,” were the next words out of the colleague's mouth. “Um … what does that mean?” I blurted, even though I knew the answer. Kory immediately lit up as she informed us that we were having not one baby, but two! This was the biggest surprise of my life.
I often marvel at how fortunate it was that my mental and physical health had improved so significantly and at how perfect the timing was. Pregnancy went incredibly smoothly, and I largely credit Trikafta and the active management of my depression and anxiety. The year prior had been filled with mental health struggles and an inability to gain and maintain weight; my pregnancy seemed to come at a serendipitous moment. Even though the coronavirus was creeping into the country and 2020 was about to become historic for many reasons, my personal life was as stable as it had ever been.
Our twins, Alder and Winslow, arrived early at 34 weeks and five days on Oct. 2, 2020. Despite being premature, they were born completely healthy. They spent 12 and 14 days, respectively, in the neonatal intensive care unit, and I spent a few nights in an adjacent unit recovering from my C-section.
The first few weeks at home -- during a pandemic nonetheless -- were made up of many of the most difficult days of my life. Kory and I were in a constant state of physical, mental, and emotional exhaustion, and help was much more limited than it would have been if we were not living in the time of COVID-19. But, aside from some abdominal issues and post-partum anxiety, I was completely healthy. How on Earth would I have done this with my former CF baseline?
One year since starting Trikafta, we have beautiful, smiley, squeaky infant twins. Kory and I are still in disbelief sometimes. We have babies? We have babies! 2020 simultaneously flew and crept by, full of the highest highs and lowest lows. But here we are, home with our healthy infant twins. What a year.
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