The Top 3 lessons I’ve absorbed as a hemophilia patient advocate
Through my journey of being an advocate for two sons with hemophilia, I’ve continued to learn life lessons that enrich my soul and make me a better person. While it’s true that…
In the Twinkling of an Eye
— Joe MacDonald
Rev. Dr. Joe K. MacDonald is a pastor in the New Mexico Annual Conference of the United Methodist Church. He and his wife, Cazandra, live in Belen, New Mexico, along with their youngest son, Caeleb, and two fur babies, Laggie and Hildie. Both of Joe’s sons (the oldest is Julian) have severe hemophilia A, factor VIII deficiency. Julian was diagnosed in 1996 and Caeleb in 2006. Joe serves on the Board of the Sangre de Oro Chapter of the National Hemophilia Foundation. Joe’s goal is to help his sons and others in the community use their voices to help improve the quality of life for those with bleeding disorders.
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Helping my youngest son plan for a dorm after leaving home
“OK, son. It’s time to get out of bed and face the day.” “But Dad, my leg hurts really bad. I don’t think I can go to school today.” Many days when my youngest…
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Soaring to high notes while managing a mouth bleed
As a proud dad, I must brag about the incredible voice of my oldest son, Julian. He soars to high notes effortlessly with a rich and full sound. I feel transported when he sings…
A bleed reminds me of my son’s hemophilia management skills
A few weeks ago, my oldest son, Julian, called me from the Blue Ridge Mountains in North Carolina and informed me that he had throbbing pain in one of his teeth. He immediately…
In Sunday school, teaching lessons from a marriage
As a pastor, my Sunday mornings prove very busy. I lead morning worship at 9 a.m., teach a Sunday school class at 10:15, and finish my morning with another service at 11. Most Sunday…
Preparing for college means putting hemophilia in its place
Preparing for change is never easy. For Caeleb, my youngest son, this season of his life is stressful yet exciting. After graduating from high school, he is marching on as a freshman at the…
Remembering treatment protocol when an emergency occurs
Cazandra and Caeleb, my wife and youngest son, rode with me several years ago to see a movie in Albuquerque, New Mexico, near our home. Caz and I planned the whole day with…
Understanding how my role as an advocate has changed over time
When my sons with hemophilia were children, my role as their advocate seemed clearly defined. My wife, Cazandra, and I sought as many sources as possible to make the best decisions…
Watching Fourth of July fireworks from the hospital gave us strength
For years, long periods in the hospital proved challenging for my family. My youngest son, Caeleb, required many extended stays because of breakthrough bleeding episodes related to hemophilia. We often tried to…
A rite of passage: My son takes on his medical paperwork
My youngest son, Caeleb, and I recently visited the Ted R. Montoya Hemophilia Treatment Center (HTC) for his yearly checkup. This appointment was his first to the treatment center since turning the magic…
In a phone call from my son, I find renewed hope
I’m sitting at my desk at work, focusing on projects I must accomplish before the day ends, when suddenly my ringtone fills the room with the song “Defying Gravity” from the Broadway musical “…
Processing unpleasant emotions amid difficult caregiving situations
Picture this: I’ve finally settled down for some peace and quiet with my wife. I’m holding a nice glass of wine, and she’s sitting in her favorite rocking chair. Our two boys have…
Returning to daily life after celebrating milestones
For the last two weeks, my family has celebrated a significant milestone for my youngest son, Caeleb. He graduated high school and now looks forward to life as a college freshman. My boy is…
