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…
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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There is a moment in every person’s journey when they realize that their story is messy, complicated, and imperfect — and it holds more power than they ever imagined. Living with a bleeding disorder often means navigating a world that doesn’t fully understand what we face. We can feel isolated…
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…
My wife is scheduled for surgery this week in Albuquerque, New Mexico. She will be in the hospital for one or two nights. We live about 3½ hours from the hospital, so we will be gone for about three days. We are optimistic that her recovery will go well…
I recall an early experience with anxiety. I was standing at the back of the church, ready to appear before the congregation to offer the sacrament of communion. But something held me back. The more I fought my feelings, the more I struggled. I took labored breaths as I stood…
You don’t have to look far to find people who are afraid of needles. There is something to be said about sharp, pointy things digging into your flesh. The process is not fun, and we endure it knowing that the medicine will fulfill its purpose. We hope to feel better…
I often say that I wish there were a course titled “How to Be a Good Parent.” You would graduate with a diploma and the confidence that your book smarts would translate into perfect child-rearing. Nothing would hold you back. Unfortunately, that’s not real life. There might be training opportunities,…
My wife and I met families with ties to the bleeding disorders community through our hemophilia treatment center (HTC). One day, Rita, the former chairwoman of our local National Hemophilia Foundation chapter, asked us to join the board of directors. I agreed, because who can say no to…
I will never forget the first time we visited my wife’s OB-GYN following the birth of “MacDonald the Older.” It was 1996, and the world of hemophilia looked much different than it does now. Synthetic products were making their way into the market. Nightmares regarding the “hemophilia…
I look into my son’s eyes and see beauty. I see the vibrant green, which fades into a blue that rivals the sky. Down in the lower left part is a spot of brown that never changes. His eyes give us a reflection of his soul. Though change is all…
Oct. 7, 2019, came and went like any other day. Our family went about our business: my son went to school, and I sat at my desk, planning my next sermon. But the day was special. It was the birthday of my wife, Cazandra, and it might have gone unnoticed…
Years ago, I watched my youngest son, “MacDonald the Younger,” as he struggled with recurring joint bleeds. Each episode took more of his mobility away. He could not extend his leg beyond 45 degrees because his knee was so full of blood, and he used a wheelchair for at least…
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