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…
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 day started like every other day — at my desk, sorting through emails inviting me to attend meetings on church activities and other community opportunities. But then, my phone lit up with a message from my son Julian, encouraging me to open a link to a song he recorded…
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…
When “MacDonald the Younger” was 5, a social worker from the hemophilia treatment center gave his name to the Make-A-Wish Foundation. They granted my son’s wish to go to Disney World. I couldn’t believe that a 5-year-old child would want to go to a theme park filled with great…
One of my favorite educational philosophers is Ruby Payne. Payne focuses on the unwritten rules of social classes and how various groups respond to and receive information. Payne suggests that the ways we communicate our needs depend largely on our environments. In other words, we are a product of…
A few years ago, my family and I attended an inhibitor symposium in San Francisco. While the conference was jam-packed with incredible information, we did have a little free time to explore the city. Fisherman’s Wharf had great food and beautiful views of the harbor. We stood on a…
Yesterday, I went through the pictures on my iPhone. I started with the most recent, moving backward, my heart beating faster with each swipe. By the time I had viewed two years’ worth, anxiety had me in its grasp. I felt like I couldn’t breathe, and I stopped looking…
There is no doubt that the new medicine Hemlibra (emicizumab) is a game changer in the treatment of hemophilia. Instead of multiple infusions daily, one injection could last two weeks to a month. Such incredible new ways of approaching treatment and care introduce different concerns and result in…
For many years we tried to overcome my younger son’s reaction to factor VIII. No matter which medical product we tried, we ended up with the same results. He would break out in hives early in the infusion. We learned that my son had developed an allergy to factor VIII,…
I was with my son in a store recently when a coloring book for adults caught my eye. Ordinarily, I wouldn’t have given it a second glance. But what made this one special was the title on its cover: “The Road Not Taken.” I couldn’t resist opening the book.
There is never a time that I do not worry about my sons. “MacDonald the Older” is 23, but not a day goes by that I do not feel concern for his welfare. The phrase “don’t do anything stupid” keeps running through my head. Will I get a call from…
In my experience, raising two children with a chronic illness includes the usual worries that parents and other primary caregivers often face. It also creates issues that directly address medical needs and concerns related to treatment. For instance, not every family deals with spontaneous bleeding into the joints. For…
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