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…
Last week, I had two dental procedures that required pretreatment because of my hemophilia B and von Willebrand disease (VWD). After prepping one of my teeth for a crown, my dentist took an X-ray that revealed an abscess, which meant I needed a root canal, too. Both procedures…
Rare Rewritten, a new campaign by the nonprofit group Remember the Girls, seeks to persuade prominent medical organizations to update their online information about women and girls with X-linked disorders. According to the group’s founder, Taylor Kane, whom I interviewed back in April, the campaign was created to combat…
As someone with attention-deficit/hyperactivity disorder, I crave a challenge. It doesn’t even have to be a significant one, just something that gives me a little feeling of accomplishment. A small win early in the day, such as solving a tricky problem, tidying a corner of my space, or…
“Don’t let anyone cut into you without talking to your hematologist first.” That’s what my hematologist told me decades ago, and I’ve never forgotten it. It’s advice that may have saved my life more than once. For people living with hemophilia, von Willebrand disease, or rare factor…
The kitchen buzzed with energy. Cookies were in the oven, a skillet of deliciousness simmered on the stove, and fresh tortillas were being rolled out on the counter. When my oldest son, Julian, and I cook together, we’re like Fred and Ginger, knowing each step and anticipating…
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