The Third Year (May 17, 2025)

The first year was a numbing fog of grief, the second year lifted the fog and revealed with brutal clarity what lay ahead, and the third year was one of unexpected possibilities and experiences in this brave new life.

In December, I went on my first "solo" travel experience. While I prefer planning my own trips, I decided to go on a tour so I could travel with people but not be responsible for anyone. I went to Costa Rica for a week and had a wonderful time - I saw wildlife in the jungles and waters of Tortuguero, whitewater rafted on the Sarapiqui River, and ziplined through the cloud forest of Monteverde. I had never gone ziplining before and thought I might be nervous, especially since the cloud forest was particularly rainy and windy that day and the trees whipped all around us. But for some reason I felt uncharacteristically calm about it. As I sailed through the clouds, I looked down and saw the tree tops emerging through the mist. I thought of Scott, and how much he would have loved this, and it felt like he was with me seeing it through my eyes. I also became good friends with one of my fellow travelers on the tour. Cathy and I saved each other seats at each meal, went on many of the excursions together, and made a toucan sighting pact that paid off for me the following day, when she knocked on my door to let me know that there were toucans by the swimming pool. A few months after the trip, we decided to go on a trip to Patagonia together later this year, and I can't wait to share this new adventure with her.

In February, I helped organize a delegation from the Pheo Para Alliance to go to Capitol Hill for Rare Disease Week. This was my second year, and already I felt like I was reuniting with old friends whom I had met the previous year. This was just one month into the new administration and a new Congress, and it felt like an uphill battle trying to get any legislation passed in a highly polarized political environment. This year's major concerns were cuts to federal research funding and Medicaid. But there are supporters for rare disease legislation on both sides of the aisle, and I got to meet the staff for my new representative (Sarah Elfreth) and new senator (Angela Alsobrooks) and introduce them to rare disease legislation (https://everylifefoundation.org/rare-advocates/advocacy-tools/legislativescorecard/) and ask them to join the bipartisan Rare Disease Congressional Caucus (https://everylifefoundation.org/rare-advocates/rarecaucus/rarecaucus-members/). It was empowering and heartening to be one of approximately 1,000 rare disease advocates who showed up from all 50 states to meet with our legislators, and I was grateful to be joined by our amazing Pheo Para Alliance team.

The most unexpected thing that happened this past year was that I met someone. Before I could even think about dating, it was important for me to think about what would bring meaning and purpose to this new life. I bought a house and made it my own, joined a widow support group that has evolved into a group of friends who check in on each other every week, and connected with friends and family and my new neighbors. I felt like I could have a good life on my own or with a partner, and that I had established my own identity and life priorities. After many months of thinking it over, I decided to try online dating. This felt very daunting, as I had never done it before and all indications were that it might be horrible. I did not have high expectations and thought it might be many months before I would meet someone interesting, but I was OK with that because I wanted to take things slowly. To my surprise, I connected with someone very quickly, and we had our first in-person date in October. This was my first first date in 28 years, and my second first date ever; Scott had been the first and only person I had ever dated. I was nervous that day, far more nervous compared to my first zipline, but it turned out to be a lovely first date, and we've been together ever since. I told my family and Scott's family around Thanksgiving; I was uncertain how they might react to the news but was deeply touched by the love and support from both families. Not every widow is this lucky. A few times I expressed surprise at how many people seemed interested in my love life, and I got the same response from different people each time - that they were rooting for me and wanted me to be happy. I am still navigating this new path but am grateful for the unexpected possibilities that this person (<NAME> - I asked him how he would like to be referenced and he liked the name placeholder) has brought into my life. I won't share much for privacy reasons, but he is working on a graduate degree and took me to his school's "prom" in early May. I had never been to prom or a formal before, either in high school or college. I went to my first prom at the age of 47 and had a great time meeting his fellow students - it's never too late for new experiences, and you never know what the bend in the road will bring.

Getting ready for my first prom

As in previous years, this spring had its beautiful moments that were bittersweet as I relived the moments of Scott's final spring. I saw the cherry blossoms blooming in DC and planted more roses in my garden and watched them bloom. Sometimes I felt overwhelmed by the sadness of those last few weeks in the hospital, but I also remembered the love that surrounded Scott and continues on for him. Earlier this month, Scott's brother and his family came to visit. I got to spend time with their 2 year old son who is a walking encyclopedia of dinosaur knowledge, just like his Uncle Scott. I felt like Scott was among us when we were together, and I think he would have been happy to see us spending time as family. My parents visited the week after that, and on the third anniversary we went to visit Scott and met his parents there. It was the first time our parents were together since the funeral, and it was moving to see them embrace each other and remember Scott together. As part of our ritual, we cleaned his grave marker and laid flowers for him, including roses that I picked that morning from the garden. We drank his favorite drinks (Coke Zero, root beer, and black cherry soda) and rang the pavilion bell in his honor.

Flowers for Scott

I'm in a different place than I was one year ago, and two years ago. I've come a long way and I know that I'll never return to the person I was before I lost Scott, and that's OK. In many ways I am stronger, and I value the connections in my life more. I am moving forward in this new life, always with Scott in my heart and grateful for new experiences that make life worth living again. No matter what may come, I want to live my life in a way that would make Scott proud.