More than 30 years ago, my wife, Cazandra, and I began our work in the bleeding disorders community after our oldest son, Julian, was diagnosed with hemophilia. Since then, we have served on the boards of several chapters and presented workshops across the country. We love the work because…
In the Twinkling of an Eye - a Column by Joe MacDonald
Raising two sons with severe factor VIII deficiency, otherwise known as hemophilia A, often overwhelmed me. When I look back on the most terrifying moments, the vision is always the same: I am submerged beneath a large body of water, fighting to reach the surface so I can breathe.
My youngest son, Caeleb, is working this summer as an office intern at St. Paul’s United Methodist Church in Las Cruces, New Mexico, where I serve as pastor. Even though I am his father, “MacDonald the Younger” does not report to me. He reports to the business manager. That boundary…
My sons, Julian and Caeleb, were both diagnosed with hemophilia as babies. Although they’re 10 years apart, each diagnosis was overwhelming and affected my wife, Cazandra, and me differently. I remember feeling helpless, not knowing anyone who had the slightest idea how to manage a bleeding disorder. For the…
I woke up on Saturday morning and struggled to stand upright. My back had given out, and I could hardly take a step forward. Sunday morning was no better, but I had to prepare for worship, so I was determined to get dressed, get to church, and fulfill my duties…
My son Julian posted a picture on Facebook this week that took my breath away. I had to look at it twice to make sure it was really him. In the photo, he was sitting on large rocks on the shore, water swirling around his feet, his hands open as…
When my sons were small, I didn’t give speaking up on their behalf a second thought. As toddlers, they had little interest in sitting through difficult explanations about their bodies and about hemophilia. They wanted to be free to play with toys and their friends. When internal bleeds…
Since my youngest son, Caeleb, arrived home from a successful second year of college, he has been interning at the church where I serve as pastor. His main job is to shred countless old documents, so I’ve nicknamed him “Shred Boy.” So far, he enjoys working and does a good…
My house is on a cul-de-sac, and right behind my street is undeveloped desert leading up to New Mexico’s Organ Mountains. I love walking on the trails in the open area whenever I feel stressed or anxious. Even when my struggles feel overwhelming, making my way through the otherworldliness of…
I picked my youngest son, Caeleb, up from the University of New Mexico in Albuquerque last week, and we started unpacking the car the minute we arrived home, his bike, electric wheelchair, walking stick, and everything else forming a pile in the garage. “Look, Dad,” he said. “This stuff is…
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- Passing the torch to the next generation of bleeding disorders advocates
- Raising sons with hemophilia made me feel like a symphony conductor
- Long-lasting hemophilia treatment may offer hope in hard-to-treat cases
