When my son “MacDonald the Older” took over his care, I celebrated his accomplishment. “MacDonald the Younger” would not reach independence until many years after his older brother did, but reducing oversight of infusing to one child proved liberating. Before the Younger’s independence, my wife and I still actively participated…
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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My oldest son, Julian, caught me completely off guard recently. “Dad,” he said when I answered his call. “When the hematologist and her medical team entered the hospital room to tell you and Mom that I had hemophilia, what did you need for them to say to help you…
One issue that faces many families with chronic illnesses is lengthy hospitalizations. The entire household is affected by the disruption in schedule and routine. Life changes drastically for everyone involved. The child in the hospital must spend precious time away from regular activities and friends. Social interaction moves from…
I work as a pastor in the United Methodist Church. One of the many challenges of participating in a denomination that calls ministers to move quite frequently in an itinerant system is the continuous upheaval regarding medical care. For those who live with chronic issues, picking up stakes and heading…
The other day, I picked up “MacDonald the Younger” from hemophilia camp. I enjoyed the trip through the mountains. The air felt fresh as I grew anxious to see my son. I wanted to hear all about his camp experience. What friends did he see? Did he try the…
Living with a chronic bleeding disorder brings a whole new set of words into our vocabulary. Around my house, when it is time to infuse, we say, “Hey guys, its time to get liquored up.” While that may sound odd, our word choices help to remind us that each treatment…
I often wonder what my sons feel when they are in the middle of a bleeding episode. Both boys tell me that a bleed into a joint or muscle feels like needles constantly stabbing into the skin. The pain is unbearable and doesn’t let up until a medical clotting…
It is no secret that I am a pastor in the United Methodist faith. Many times, I find that having children with bleeding disorders challenges my theology and how I view the world, when considering divine providence over life and the struggles that make us human. I am…
Our family took a recent trip to White Sands, New Mexico. The dunes were amazing. I had thought that my feet would burn due to the heat. However, I was pleasantly surprised to realize that the sand was cold. I enjoyed walking barefoot as we climbed to the top of…
A name is not mere letters on paper or a screen, but a way to proclaim our existence. What we call ourselves lets the world know who we are. My name, Joe Keith, comes from my great-uncle (my grandfather’s brother). I take a great deal of pride in carrying on…
Having a family member admitted to the hospital throws the entire family’s routine into absolute chaos. We lose our control of time, as well as our privacy. While it is great to see a friend or to hear good news from the medical staff, we are unable to dictate…
One of the best things about my relationship with my wife is our team approach to difficult circumstances stemming from hemophilia. I tend to remain calm at the beginning of a problem, while she is active toward the end. Our responses mostly happen automatically, like clockwork. We are grateful…
My oldest son will be moving out of the house in a few weeks to rent an apartment with a good friend of his. My mind continues to bring light to the fact that he is 22 years old. It is time for him to spread his wings and leave…
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