I entered my 3-month-old son’s room and stared at him as he peacefully slept in his cradle. Streetlights shined through the window into the darkened room. I glanced out at a serene view that reminded me that everyone uses nighttime to rest. I turned to my baby boy, unsure of…
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…
If there is one word in the English language that drives me batty, it’s “chaos.” It implies a lack of control and an inability to stand on firm ground. It isn’t pleasant to be forced into a world that lacks any sense of stability. I must find a way to…
As caregivers of loved ones managing chronic illness, we face questions that, when first heard, knock us to our knees. For my family, it was not so much a question as a statement. When “MacDonald the Older” was 4 years old, we set up to infuse through his port-a-cath…
It’s essential that we inform the world about struggles in the bleeding disorders community by showing them how to be advocates. We must teach our loved ones how to educate and inform those in leadership about the needs faced by those with hemophilia and other disease states resulting in clotting…
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…
Heroes come in all shapes and sizes. Sometimes, it is challenging to recognize the people in our lives who overcame overwhelming odds to remind us that life means more than merely accepting our condition. We must thrive, even when we face uncertain futures, painful treatments, or life-changing issues. Our champions,…
Families who live with chronic illness have quickly learned to place trust in medical teams to determine the best course of action. If doctors and nurses suggest we quarantine, we may not like it, but we follow the guidelines, believing that the prescribed course of action will deliver the…
With all the issues surrounding the new coronavirus, I can’t help remembering about 15 years ago when we faced the possibilities of a medical shortage in the bleeding disorders community. A shortage of factor VIII meant that many in the hemophilia population faced a lack of medicine to…
Raising children is like building a house. For those of us who manage chronic illness and other disorders, our floor plans may look a little different, but at the end of the day, we all want our loved ones to be strong and sturdy, and ready to face life’s…
I do not have hemophilia. My sons are the ones who live with a chronic bleeding disorder, and at first, I struggled to find something we might have in common. My wife and I are musicians, and the running question during my wife’s pregnancies was, “What if they are…
I do not like to tell people that my sons are hemophiliacs. It is not that I am blind to the reality that they have a bleeding disorder, but my boys are so much more than a diagnosis. Why address them as if they carry a title or wear a…
As I mentioned in an earlier column, the news that my firstborn son had hemophilia caught my wife and me entirely off guard. When we spoke with the obstetrician, the only word we heard was hemophilia. We later learned that my son had another diagnosis: a low inhibitor titer. The…
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