I am a pastor and a parent of two sons with hemophilia, a rare, genetic bleeding disorder that occurs in about one in 5,000 male births. My youngest son has a high-titer inhibitor, which means his immune system has developed antibodies to factor replacement. He’s also had an allergic reaction…
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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Second in a series. Read part one. Both of my sons were diagnosed with severe hemophilia A a few days after they were born. But that’s where their similarities end. As I shared last week, things went smoothly after we switched to a more flexible way of caring…
I am convinced that many of us live for “aha” moments. I’m referring to those times when an unexpected realization occurs that either confirms or changes the course of one’s life. These moments are often welcome guests, but sometimes they rage like a fierce hurricane, and the best we…
Over the past few years, my youngest son has developed pain in joints that were damaged by internal bleeding episodes. As a result, he struggles some days to walk due to an arthritis-like ache. His hematologist prescribed the medicine Celebrex (celecoxib) to help with inflammation, which decreases…
Many times, when I look back at how I handled my sons’ hemophilia care, I quickly remember the poor choices I made. I ache over decisions that caused heartache, and allow them to capture my full attention. Too often, I fixate on how one decision affected life choices, often leading…
When my oldest son was 2 years old, he came up to me with a serious expression and said, “Dad, this monster slapped me right in the face.” I told him I had some monster spray in my room and would ensure that his room no longer contained any strange-looking…
About seven years ago, my youngest son experienced the worst of the worst regarding hemophilia. My boy missed most of his second-grade year — 128 of approximately 180 instructional days — because of continuous breakthrough bleeding episodes followed by extended hospital stays. Unfortunately, we could not get ahead of his…
There are moments when dealing with hemophilia proves overwhelming and we lose ourselves in the fight to overcome the pain of breakthrough bleeding. My youngest son, affectionately called “MacDonald the Younger,” dealt with two target joints, or places where bleeding episodes occur repeatedly, prior to his current treatment. His…
Many years ago, when hemophilia came into my family’s life, rearing its ugly head like a lion ready to devour its prey, we held on to anything we could. As the chaos of chronic illness overtook our lives, my wife and I made plans to help our children manage their…
When my youngest son was 4, he wanted to play baseball. My nerves were shaky as I took him to register for the fall season. I hoped he would enjoy playing the sport. When the first game of the season rolled around, my wife and I sat in the bleachers,…
“MacDonald the Older,” which I call my eldest son, successfully auditioned for the International Performing Arts Institute, a national musical theater symposium. He calls me nearly every night to share the great things he learned in different classes. My heart leaps up and down with joy when I hear his…
I recently accompanied my youngest son to his comprehensive checkup at the Ted R. Montoya Hemophilia Program and Treatment Center. Located in Albuquerque and affiliated with the University of New Mexico hospital system, the center serves as our main treatment facility for hemophilia. “MacDonald the Younger” started seeing the…
My older son came to visit us for the first time since March 2020. Although we talk almost every day, there is nothing like seeing him in person. I didn’t realize how much my soul craved communion with him. We laughed and talked about how good it is to have…
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