I have a variety of satellite radio stations saved as favorites in my car, with Broadway, The Blend, Classic Rock, The Groove, Symphony Hall, and ’80s as the ones I enjoy the most. The ’80s music transports me to my high school days, which were filled with beautiful memories.
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On a recent call with others in the bleeding disorders community, a poignant concern emerged: the fear that the harrowing history of hemophilia‘s dark days may be slipping from our collective memory. The “hemophilia holocaust” remains a haunting chapter in medical history, etching an indelible mark on…
Today started out like most any other day. I walked into the room of my youngest son, Caeleb, to wake him up to get ready for school. I love the ritual of turning on the lights and singing a familiar tune to my family. As I began, however, I found…
When my youngest son, Caeleb, was 8 years old, our family went on a trip that required him to use a wheelchair at the airport. His severe hemophilia A with an inhibitor had caused persistent joint bleeds, which resulted in significant pain and limited mobility, as well as…
Loneliness in marriage is a controversial subject, and one often discussed in a negative light. But in my marriage to my husband, Jared, who has severe hemophilia B and a seizure disorder, it’s a feeling that often creeps in whenever he’s stuck in bed due to a severe bleeding…
As my beloved hematologist pointed out during my last hemophilia clinic appointment, my health situation is rare. I have at least two identified bleeding disorders: von Willebrand disease and hemophilia B. I’ve met others along my journey who have two disorders, too, but the situation…
I have battled weight and self-image issues since I was a teenager. Being present with my hospice patients day in and day out becomes draining. I take on any pain and disappointment my husband and sons experience. And when I witness my boys struggle because of hemophilia, the…
As the season of love and romance approaches, my husband, Jared, and I are already brainstorming ideas for possible February dates. We’re no strangers to unconventional coupledom. A trip to a park or a museum trumps a stroll at the mall; a night filled with laughter while watching a comedy…
Last year, at the Hemophilia Federation of America‘s Mild Matters Summit in Oklahoma, I attended a session led by physical therapist Nancy Durben that left a lasting impact. Durben guided a group on a leisurely walk, urging us to savor the experience — to relish the sound…
This week, my youngest son, Caeleb, visited the pediatric clinic for his last comprehensive exam there. My mind went in a million directions as I recalled meeting his hematologist, Shirley Abraham, MD. She witnessed the tough times when my son struggled through many painful spontaneous bleeding episodes because…
