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,…
As I sat in my chair at home, I heard Julian, who’s 29 and my oldest son, singing at the top of his lungs. Every note floated higher as if it would touch the clouds. My thoughts were interrupted, but I welcomed his sound, which fills my soul. Julian expresses…
Cazandra and Joe MacDonald share their 37-year journey together, from a chance meeting in college to raising two sons with severe hemophilia. They reflect on parenting with chronic illness in the family, the commitment that has kept their marriage strong, and the music and laughter that have carried them through.
My youngest son, Caeleb, came to the table the other day with a massive grin on his face. “Guess what?” he said. “I just received an email from housing at the University of New Mexico [UNM], confirming that I have a dorm room for the school year. Can you believe…
As a hospice chaplain, I offer space for people to speak. I meet them where they are as they grieve. From patients who need to reveal their regrets and disappointments to family members wracked with guilt, I am present and give them space. No judgment. Sometimes it’s difficult not…
All my life, I’ve chased achievement. It made me crave purpose. I was once a “gifted child,” even called a genius by the Philippine Daily Inquirer — and briefly, I was a commercial model for milk, too. My innocent 5-year-old face appeared in ads juxtaposing little me with history’s…
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