I imagine most people have vivid memories of the first date they went on with their spouse. Emily took me on a hike through Will Rogers State Park in Los Angeles. It was a perfect, blue-sky, Southern California day. It was also the day my future wife told me she would likely die at a much younger age than me.
I met Emily in 2010 at a flag football tournament in San Luis Obispo, California. I was a student at the University of Colorado - Boulder, and she went to UCLA. We stayed in touch for a year, and eventually I worked up the courage to invite myself to LA to visit her for the weekend. At the time, I had no idea what cystic fibrosis was. But Emily was brave enough to tell me on day one that there were some things I needed to know before we decided to dive into a relationship. She explained that she had CF, there was no cure, her life expectancy was significantly shorter than mine, and a potential future with her brought a lot of uncertainty.
When you’re 20 years old and you’ve just met the girl of your dreams, none of that matters. I didn’t know what life with a partner who has CF would look like. I wasn’t thinking about what the next 5–10 years might look like, let alone the next 20–30. I wasn’t thinking about the potential implications her health might have on starting a family. All I knew is that I had met the girl I would marry someday. So, we started dating long-distance and got married the fall after graduation. I was quickly immersed into the world of CF — learning about her dozens of medications; seeing her do multiple breathing treatments each day with the vest; waking up in the middle of the night to the sound of her coughing fits; and almost always hearing a slight wheeze in her breath. At the same time, we were both laser-focused on building our careers, which both happened to be in local TV news.
When we got married, we knew we wanted to have kids someday. But the schedule and (lack of) pay in local TV made it impossible to even think about starting a family in our early 20s. Then, six months after we got married, Emily’s younger sister, Jessica — who also had CF — was hospitalized. Jessica’s lung function was plummeting, and she was waiting for a transplant. She was put on life support in late May 2014. Jess fought with everything she could to hang in there. But the lungs she needed never came. We were at Jess’ side when she passed away on May 31, 2014.
When Emily told me the potential realities of building a life with someone who has CF — I know I heard what she said. I remember her looking me in the eyes at Will Rogers State Park, trying her best to spell it out for me. But I didn’t fully understand it. Maybe it was the naïveté of being in my early 20s, and feeling like time was on my side. Maybe it was denial in the sense of, “I get it — CF is a life-threatening disease but that won’t happen to you or Jess. They’ll figure something out!” But when we lost Jess, the weight of what Emily has been up against her entire life hit me like a freight train.
Fast forward a decade, and we’re in a totally different stage of life. We’re in our early 30s, settled in new careers, and no kids. When Emily and I meet someone for the first time and they find out we’ve been married over 10 years, their natural response is, without fail, “Wow! And do you have kids?” I get it — it’s the expected next step in our society. Almost all our friends and family members our age have kids. But a few years ago, Emily and I realized our priorities were different than many of our peers. To be honest, I’m really protective of my time with Emily because time has always been such a big question mark in our world. The idea of spending the next 20+ years raising a family is hard to wrap my head around.
Legacy can be defined in many ways, and I think people often point to their children as their legacy. But last year, I was given a new perspective. I attended the CF Foundation’s Volunteer Leadership Conference (VLC) where Joe O’Donnell was honored with a lifetime achievement award for all he has done in memory of his son, Joey — including helping raise over $500 million. I didn’t know who Joe O’Donnell was prior to the VLC. Now, I have a picture of him on my desk that I see every day as a reminder of the immense impact someone can have. I never got to meet Joe, as he passed away earlier this year. But he has become a hero of mine.
After losing Jess, Emily and I wanted to get involved with the CF Foundation in whatever ways we could. It’s our way of honoring Jess — we’ll continue to fight for her every day. For me, as a spouse of someone with CF, fundraising and helping spread awareness feels like the least I can do to help Emily in her fight. I’m fortunate enough to serve on the board of the Rocky Mountain Chapter; Emily and I started a charity golf tournament three years ago; I continue to go to VLC where I’ve gotten to meet so many great people in the CF community who are making a difference; and last spring, I went to D.C. for my first March on the Hill (and it won’t be my last!).
I know Emily would be an incredible mother. I saw firsthand the way she took care of Jessica in the hospital, literally to her last breath. I have asked multiple CF medical experts if they truly believe we’ll see a cure in our lifetime. Every one of them has told me yes, but that it’s also a huge challenge that will take billions of dollars. If Emily and I can help play a role to get all of us closer to that finish line — that’s a legacy I would be extremely proud of.
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