I arrived late for the concert. An usher whisked me to my seat, as my husband and our son Caeleb had already arrived. As I walked down the aisle, feeling very conspicuous in my clerical collar (I didn’t have time to change), I noticed the backs of hundreds…
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I’ve written here numerous times about my love for the American pop-punk band Fall Out Boy. Since discovering them in 2007, I’ve been a huge fan of not just their music, but also the guys in the band and their individual career paths. My husband, Jared, and I…
In the 1970s and ’80s, treating my von Willebrand disease and hemophilia B often involved a regimen that included fresh frozen plasma, platelets, and cryoprecipitate. Cryoprecipitate, a blood component derived from frozen plasma, contains vital clotting factors such as fibrinogen, factor VIII, von Willebrand factor, and factor…
It’s hard to believe, but my youngest son, Caeleb, will graduate high school in just a few months. I think back over the past 18 years of his life and stand in awe regarding the difficulties he’s faced while living with hemophilia. In his elementary school years, he struggled…
When I was a young woman, I was very negative. I would look ahead to a situation and immediately imagine the possible pitfalls. I never considered everything would work according to plan. When plans went better than expected, it was a bonus. As a former glass-half-empty kind of person,…
Irony manifests in diverse forms, but cosmic irony captivates me the most. This literary device suggests that the universe possesses a sense of humor, purposefully orchestrating situations contrary to expected outcomes. This often results in both amusement and reflection. One popular example of cosmic irony happens in the movie…
A person like me, with bleeding disorders like hemophilia and von Willebrand disease, can incur staggering expenses. The cost of medications alone can soar into the thousands of dollars per dose, and multiple doses are frequently required to manage bleeding episodes effectively. In 2019, I faced the…
If there’s one thing that moves me to tears, it’s sharing the love I have for my sons. I think of the million and one directions that once lay before me and how I chose to follow my heart, marry the love and joy of my life, and raise children.
I have a variety of satellite radio stations saved as favorites in my car, with Broadway, The Blend, Classic Rock, The Groove, Symphony Hall, and ’80s as the ones I enjoy the most. The ’80s music transports me to my high school days, which were filled with beautiful memories.
On a recent call with others in the bleeding disorders community, a poignant concern emerged: the fear that the harrowing history of hemophilia‘s dark days may be slipping from our collective memory. The “hemophilia holocaust” remains a haunting chapter in medical history, etching an indelible mark on…
