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…

A research study is asking people with hemophilia and other inherited bleeding disorders living in the U.K., U.S., or Germany to take part in a survey evaluating how the COVID-19 pandemic is affecting the mental health of those with these diseases. The four-part survey, which can be…

On Tuesday morning of last week, as I sat at my desk sifting through emails and attempting to plan my afternoon, my phone rang. I saw it was Julian, my oldest son, so I picked up the phone and steadied myself for our usual late-morning chat. I said hello in…

During the summer, my sons and I usually choose a museum to visit on Fridays. It started with “MacDonald the Older” and continues with “MacDonald the Younger.” I look forward to the special times that I get to celebrate with my stinky sons. I call those moments sacred, set apart…

When you live with a bleeding disorder, life can sometimes seem to be nothing but chaos. Just as one bleed seems to heal, another one begins. You start to infuse a factor at closer intervals, and before you know it, you are setting your alarm for factor dosing…

One day, my youngest son, whom we affectionately call “MacDonald the Younger,” and I flew to a hemophilia conference. He could not wait to see old friends, and I could not wait to gather with my tribe and learn about advancements in treatments for those with bleeding disorders. My…

The World Federation of Hemophilia (WFH) has launched a registry to monitor long-term outcomes of safety and effectiveness for people with hemophilia who receive gene therapy treatment. The aim of the WFH Gene Therapy Registry (GTR) is to collect data for all patients who have gene therapy, whether through…

I’m a homebody. I work from home most days, and when I’m relaxing, I’m quilting, sewing, or weaving. The gratitude I have for my home and my activities there is overwhelming in the best of ways. While the pandemic has caused many to feel trapped, unable to move about the…

I went to college to become a teacher. Actually, to become a middle school band director. Four years of college were great, but student teaching was how I learned to teach. Two excellent supervisory teachers helped me find my way, answered questions, and taught me useful lessons by their example.

The other day, I ran across a tiny, plastic bag that contained a blue bead representing a clinic visit. My son Caeleb was part of the Beads of Courage program at the University of New Mexico Children’s Hospital. The program uses glass beads donated by artists to help…