Last week, I drove two hours to my hemophilia treatment center (HTC) in Tampa, Florida — not just to see my hematologist or get my labs done, but to meet with the physical therapist. The distance was long, but the trip was worth it. My knees have always been…
Columns
When I reflect on the unexpected detours my life took when my wife, Cazandra, and I had children, I cannot help but feel gratitude for them. They led me to where I am now. The author and teacher Joseph Campbell once wrote: “We must be willing to…
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…
Ina Fowler, 68, of Brooksville, Florida, lives with several conditions, including hemophilia C, platelet dysfunction, atrial fibrillation, and peripheral artery disease. She recently suffered a brain bleed. To learn more about Ina’s journey, I spoke with her via Zoom. When Ina was in second grade, she hemorrhaged after a…
My recent columns have focused on my experience at the National Bleeding Disorders Foundation’s (NBDF) annual Bleeding Disorders Conference, held Aug. 21-23 in Aurora, Colorado. I wrote about fun times with colleagues and new friends, and offered my gratitude to salespeople who truly care. I shared that my…
I bought a new mattress and anxiously awaited its delivery. At last, the furniture truck rumbled in the cul-de-sac and stopped in my driveway. Seeing my new, plush, dreamy mattress rolled up like a carpet and crinkling inside its plastic wrap was odd, but I knew it’d soon offer a…
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…
When I traveled with HAPLOS, the Hemophilia Philippines Foundation, about six years ago to visit families with bleeding disorders in rural provinces, I expected hardship. What I didn’t expect was how drastically the same diagnosis could play out depending on where and how you lived. My husband, Jared,…
Recent Posts
- For hemophilia parents, letting go of control is hard, but necessary
- A recipe of support for parents new to a hemophilia diagnosis
- New CAAR-T therapy may eliminate hemophilia A treatment blockers: Study
- A little reminder about how to pay better attention to bleeds
- When ‘difficult’ shoes make life with hemophilia easier for my husband