Columns

Many of my recent columns have focused on my youngest son, Caeleb, and his transition into adulthood. I’ve shared how we’ve empowered him to live his best life, including lessons on taking responsibility for himself as he navigates the world. He must take the baton that we’ve handed him. We…

While riding a bus at the first hemophilia conference I attended, I met a young man who had mild hemophilia, just like me. Unlike me, he’d been diagnosed close to birth. Then he shared his factor VIII levels; shockingly, they were higher than mine. I sat in disbelief. I’d…

When my husband, Jared, was growing up, people in his community didn’t always speak kindly about mobility aids. Crutches, wheelchairs, and canes were often seen as signs of helplessness, things you turned to only when you’d run out of options. That perception stayed with him well into adulthood. He did…

First in a series. Have you ever wondered what it’s really like to receive gene therapy? I know I have. So when I had the chance to interview 75-year-old Chip Hailey of Tennessee — one of the participants in a clinical trial for Hemgenix (etranacogene dezaparvovec), the first…

Last week I traveled to Las Cruces, New Mexico, to spend a few days with my wife, Cazandra. She works as a hospice chaplain there and usually travels back to Belen, our current home, on weekends. We’ll end this busy commute schedule next month, when we both move full…

My household is navigating a season of major change. As the family of a frequently relocating pastor, we’ve honed our adaptability, mastering the rhythm of moving with grace and resilience. This summer we’ll exhibit that adaptability again as my husband moves to a new appointment in Las Cruces, New…

Plan D. That’s what I’m working on now. Last week, I learned that a factor VIII (FVIII) product I’m taking for my hemophilia has had some disappointing results. I can’t say I’m surprised about that, as I had a negative reaction to the medication, including feeling lightheaded and…

My husband, Jared, has been performing his factor infusions for his hemophilia B for over three years now. In that span of time, he’s learned so much — not just about veins, syringes, and technique, but also about his body and his limits. Infusing factor IX has become…

Recently, I attended the Florida Bleeding Disorders Association’s Women’s Educational Retreat in Hollywood, Florida. I came away with several important takeaways, but one presentation by Lucila Ramirez Donaldson of Genentech truly resonated: caregiver burnout. Many of the women attending were mothers or partners of people living with hemophilia. I’ve…

Despite what appears to be a tranquil season regarding my sons’ hemophilia, I know it simmers right under the surface and could rear its ugly head immediately. For now, life is good. As my wife, Cazandra, and I are moving a couple hundred miles away as we…