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…
Columns
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…
A week ago, my oldest son, Julian, left home to begin rehearsals for a musical that could open doors to a long-term career. The show is a parody of the slasher movie “Saw.” Its producers hope to have him rehearse for a few weeks in San Antonio before sending him…
I’ve lived in New Mexico for 20 years, but I only recently visited the Loretto Chapel in Santa Fe. The chapel is known for its spiral staircase, built in 1878 with wooden pegs only, no nails. The staircase rises 22 feet to the choir loft without any central support.
I had a lot to learn about hemophilia when I attended my first retreat for women with bleeding disorders in 2017. Some of the attendees were comparing their levels of clotting factor VIII (FVIII), the protein that’s deficient in hemophilia A, when I was shocked to learn mine were the lowest…
Hemophilia doesn’t just alter bodies and routines. Over time, it can also quietly shape expectations about who leads, who manages risk, and who carries responsibility. These expectations are rarely spoken out loud, but they’re powerful enough to follow people into adulthood, partnerships, and marriage. What complicates things is that…
Recent Posts
- The gift of a song reminds me that my son is more than his challenges
- Hemophilia has taught me to pause before judging other people
- For World Hemophilia Day, focus is on early, accurate diagnosis
- Physical limitations don’t diminish a person’s abilities
- What looks good and feels right: Getting dressed with a bleeding disorder
