The email started with two words: “Good night.” I understood it right away. It’s what a mother writes when the house is finally quiet, but her mind isn’t. Her name is Deiralina Morillo, and she lives in the Dominican Republic. Two of her three children, both daughters, have factor…
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If I could change one thing about my parenting, I would have learned to manage my temper during my sons’ factor infusions. Julian and Caeleb are 10 years apart, but both live with hemophilia A and developed a fear of needles around age 6. My wife and I tried…
Halloween is one of my daughter’s favorite holidays. She looks forward to creative costumes and makes drawings of pumpkins, ghosts, and bats. Here in the Philippines, people have different attitudes toward the occasion, but that hasn’t dampened her enthusiasm. As I write this, we have a Halloween display in our…
Every new hematologist asks the same question: “Who else in your family has it?” For most of my life, the answer was nobody. Nobody with a diagnosis, anyway. I was diagnosed with hemophilia B and von Willebrand disease (VWD) in 1975, at age 10, and I was…
Long before our sons could advocate for themselves, my wife, Cazandra, and I spoke on their behalf. At the beginning of every school year, we met with the principal, school nurse, social worker, faculty, and other staff members who would work with them. We explained concerns related to their…
“Mom, I want to visit somewhere famous!” “Sweetie,” I replied to my youngest child, “We live in one of the most famous cities in the world.” Exasperated, she chirped back, “But it doesn’t feel famous.” A few months later, our family took a cruise. We started in Genoa, Italy, sailed…
Some medical offices won’t schedule me for a procedure without clearance from my hematologist. Others never even ask. I’m the same patient with the same blood, yet I get completely different answers to the same question: Does my bleeding disorder matter? For my colonoscopy earlier this year, the answer…
For years, I saw wheelchairs and other mobility devices as symbols of limitation — signs of everything a person could no longer do. Then my youngest son, Caeleb, needed a wheelchair due to complications of hemophilia, and I began to see it through his eyes. What I feared would…
Our 7-year-old daughter, Cittie, recently found herself at the top of a climbing wall at a neighborhood playground. She had managed the climb just fine, but when it came time to descend on the other side, she hesitated. Other children were doing it without much thought, while some parents were…
In the spring of 2025, I set out to create a piece of art depicting both the challenges and the beauty of navigating treatment for hemophilia A. However, soon after I started the piece, my health plummeted, and I could no longer focus on art. Over the course of…
