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…
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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I like to think my wife, Cazandra, and I did a decent job of teaching our two sons, Julian and Caeleb, how to manage their bleeding disorders. We drilled into their heads the importance of maintaining health insurance, as their hemophilia medications are too expensive to afford…
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…
I am sitting in a favorite restaurant with the three great loves of my life: my wife and two sons. It is Valentine’s Day, and the place is packed and loud. But the noise fades into the background as I find myself captivated by the conversation at our table. We…
A lack of control is one of the most frustrating things about staying in the hospital. Doctors, nurses, and everyone else enters the room without permission. Nothing runs on my schedule. I need to find a way to reclaim at least a small part of my life. I do not…
As a father of sons with hemophilia, I know my way around a hospital like the back of my hand. We have visited the emergency room far too often. An internal bleed from a fall or a spontaneous joint injury would start at home and continue to cause…
We all have a story about a time when our lives changed. Some memories elicit the best of times, while others recall deep pain. For me, the day my eldest son, “MacDonald the Older,” was diagnosed with severe hemophilia proved surreal. I had no idea what a bleeding disorder…
We have looked forward to this moment for years. No longer do we have to find veins or stick a 2-inch needle into a port-a-cath under the skin every day. All that is required is a subcutaneous injection every two weeks. The future is here, and while we exude…
My son couldn’t walk, and placing him in a wheelchair proved to be impossible. Internal bleeding into a knee or ankle forced my “stinky boy” to remain in bed. I hurt for him, thinking, “If only he could get in a wheelchair, he could see the world.” We wished…
My family entered the hemophilia community more than 23 years ago with the birth of my oldest son. During our time with the bleeding disorders community, my wife and I learned to access ports, treat and perform peripheral sticks, and negotiate difficult circumstances. We did not receive a manual titled…
As the year draws to a close, I cannot help but review the successes and failures of the past 12 months. How do I continue to honor the many roles that I play as a husband, father, caregiver, and pastor? Where is there room for improvement? How can I improve…
I am scrambling to find my way back to a schedule that includes time to write and research. For some reason, I am finding it difficult to get motivated. I set out to finish my doctorate in ministry from Austin Presbyterian Theological Seminary, and now I have it. What’s…
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