Columns

Last week in Tampa, Florida, I attended the CHES Foundation’s One Drop consortium, the largest national conference dedicated exclusively to people living with ultra-rare bleeding disorders. The program focuses on conditions that often lack the resources, research attention, and community networks that are available to those with more common…

I like to think my wife, Cazandra, and I did a decent job of teaching our two sons, Julian and Caeleb, how to manage their bleeding disorders. We drilled into their heads the importance of maintaining health insurance, as their hemophilia medications are too expensive to afford…

My family loves my chocolate chip cookies. I don’t even know where the recipe came from, but it’s written on a card I keep in a flowered index box I got at my wedding shower more than 33 years ago. After years of baking, the card is stained and the…

I love a good routine because they’re predictable and comforting. As someone who is anything but a morning person, I find my morning routine to be the most essential. I’m not particularly fond of breakfast, so as part of my routine, I make myself a smoothie that I usually finish…

There’s something humbling about watching someone relearn how to walk. Not as a toddler, and not for the first time, but as an adult who already knows what walking used to feel like. My husband, Jared, has severe hemophilia B, and for years, his right ankle has been what’s…

Last in a series. Read parts one and two. In the previous columns of this series, hemophilia awareness advocate Lee Hall shared his memories of a childhood shaped by hospitalizations and the painful reality of early hemophilia treatment, followed by the devastating era from the 1970s…

My son Caeleb called me last night, sounding stressed. “Dad, I have so much to do that I don’t know where to start,” my youngest son told me. “I have big projects due early next week in three of my classes, my knee is killing me, and I have…

As a hospice chaplain, I meet people during the hardest moments of their lives. Whether at a deathbed or in a funeral home preparing for a service, these are times of finality. Grief brings people together as they share their loss and honor the person who has died. A recent…

When I was 3 years old, I joined a television pageant for little girls called “Princess Asia.” I won the top prize. But when I look back on that moment now, the crown itself feels almost incidental. What stands out more is that I caught amebiasis, an intestinal infection, just…

Second in a series. Read part one. In my last column, hemophilia awareness advocate Lee Hall shared memories of a childhood shaped by hospital stays, difficult infusions, and the early days of hemophilia treatment. For many readers, those experiences may already feel unimaginable compared with the care…