As a parent of two sons, Julian and Caeleb, who have hemophilia, I’ve developed a pet peeve when discussing their bleeding disorders with others. My wife, Cazandra, and I avoid labeling them as hemophiliacs. Instead, we prefer to say that our sons have hemophilia. This seemingly…
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Becoming a parent changes everything in life. This was certainly true for my husband, Jared, who’d always dreamed of being a father, despite having severe hemophilia B and frequent seizures. When our daughter, Cittie, was born, that dream came to life, giving him more purpose and even improving…
I have long admired the world-renowned ballerina Michaela DePrince. Like many others, I was captivated by her inspiring journey from being a war orphan in Sierra Leone to her rise as a star on the global dance stage. Tragically, DePrince recently died at the young age of 29, just one…
This year’s annual Bleeding Disorders Conference began a week ago in Atlanta and ended on Saturday. While it wasn’t my first such event, it brought several new opportunities. For one thing, as my wife, Cazandra, and I packed for the event, I felt mixed emotions. At recent conferences,…
I was honored to speak with my husband last week at the National Bleeding Disorders Foundation‘s annual Bleeding Disorders Conference, held this year in Atlanta. It was a memorable experience to share our story with fellow community members. While I’ve spoken at conferences nationwide for many years,…
Lately, I’ve been feeling burned out in my day job as a virtual assistant. While it helps pay the bills, the tasks are sometimes repetitive, and I often long for something that keeps me motivated for longer. Sustaining motivation is a constant challenge for me, as I’m diagnosed with attention-deficit/hyperactivity…
At 32, Ashley Zebley from Arkansas is no stranger to bleeding disorders. I recently interviewed her over the phone. Ashley explained that her father has severe hemophilia B, and both her maternal grandmother and great-grandmother exhibited bleeding problems, although neither was diagnosed with hemophilia. Ashley herself is a…
Many times, I find myself overwhelmed by the weight of my responsibilities, particularly when it comes to managing issues related to my sons’ hemophilia. The stress from different directions can be paralyzing, and I often grapple with anxiety about how to handle everything at once. The burden…
“Be prepared.” Scouts around the world have this motto ingrained in their hearts. While I was a Girl Scout for only a short time, this practice remains essential to me. I look ahead and consider the numerous ways a situation may manifest. As the mother of two sons with…
As a mom and piercing enthusiast, I’ve always looked forward to the day my daughter, Cittie, would want her ears repierced. They were pierced when she was a baby, but her curiosity back then led her to constantly play with her earrings, which caused an infection. Her father and my…
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