Some days, my husband, Jared, who has severe hemophilia B, is unstoppable. He’ll haul a heavy plant pot across the living room, rearrange furniture, or even knock out a workout that would leave me sore for days. On other days, he’s down for the count; there’s no negotiating with…

Dinner with friends is a delightful escape from the daily grind, a precious opportunity to share moments of love and presence. Recently, another couple invited my husband, Joe, and me to dinner at their home here in Las Cruces, New Mexico. The prospect of spending quality time with them and…

I can already tell this journey will be long, and that sucks. I remind myself to breathe. Inhale for a count of three, hold for a count of four, exhale for a count of five. Repeat. I wring my hands, fight back tears of frustration, and try again. I name…

The other day, I watched my husband, Jared, handle a parenting moment in a way that surprised me. He didn’t scold or lecture our young daughter. He didn’t swoop in with a tidy “lesson learned” speech. Instead, he did something that some parents might find unconventional and even controversial: He…

Doubled over in pain, I can barely walk, and just breathing hurts. A tight, squeezing sensation like a vice grip envelops my stomach. I repeatedly call to try to schedule an appointment with a specialist. I eventually set an alarm every Friday to try again, believing that perhaps a squeaky…

My wife, Cazandra, and I enjoy speaking on topics critical to the bleeding disorders community, as both of our adult sons live with hemophilia. A few weeks ago, we had the chance to lead a seminar called “Telling Our Stories” at the National Bleeding Disorders Foundation’s (NBDF) annual…

Lately, I’ve been toying with the idea of starting a social media channel that captures slices of my everyday life. On the surface, that might not sound unusual. Plenty of people create online spaces to document what they love, what frustrates them, or what they’ve learned. But for me, the…

I walked into the bleeding disorders conference filled with anticipation. After living abroad for over a decade, I had returned to the U.S. and was excited to connect with experts and patients to learn more about managing hemophilia as a woman. As I entered the event, I was mesmerized…

Ethan Ash, a member of the Bionews team (actually, its executive vice president of business development), called me over to tell me it was my turn to hit the golf ball. He interrupted me as I was talking with Erica Millman, another member of our Bionews team and the…

The other day, a neighbor stopped me in the walkway and asked, “Are you feeling OK?” I said yes, I was fine, though I was a little surprised by the question. Then came the explanation: They’d read I have a blood disorder. That moment stuck with me. On the outside,…