I woke up on Saturday morning and struggled to stand upright. My back had given out, and I could hardly take a step forward. Sunday morning was no better, but I had to prepare for worship, so I was determined to get dressed, get to church, and fulfill my duties…
In the Twinkling of an Eye - a Column by Joe MacDonald
My son Julian posted a picture on Facebook this week that took my breath away. I had to look at it twice to make sure it was really him. In the photo, he was sitting on large rocks on the shore, water swirling around his feet, his hands open as…
When my sons were small, I didn’t give speaking up on their behalf a second thought. As toddlers, they had little interest in sitting through difficult explanations about their bodies and about hemophilia. They wanted to be free to play with toys and their friends. When internal bleeds…
Since my youngest son, Caeleb, arrived home from a successful second year of college, he has been interning at the church where I serve as pastor. His main job is to shred countless old documents, so I’ve nicknamed him “Shred Boy.” So far, he enjoys working and does a good…
My house is on a cul-de-sac, and right behind my street is undeveloped desert leading up to New Mexico’s Organ Mountains. I love walking on the trails in the open area whenever I feel stressed or anxious. Even when my struggles feel overwhelming, making my way through the otherworldliness of…
I picked my youngest son, Caeleb, up from the University of New Mexico in Albuquerque last week, and we started unpacking the car the minute we arrived home, his bike, electric wheelchair, walking stick, and everything else forming a pile in the garage. “Look, Dad,” he said. “This stuff is…
My oldest son, Julian, has one life goal in mind: to make it to Broadway. From his earliest years, my boy would sing for anybody who would listen to him. While we share a love of music, I admit that he can sing so much better than I ever dreamed.
I can juggle many things in my life, but I do have my limits. I have a mental image of me playing the clown, entertaining children while the spotlight is on me. As I start with one ball in the air, I feel sure and stable. Someone throws a second,…
In observance of Mother’s Day, I can’t help but think about three amazing women who have proven their strength and dedication to my sons, Julian and Caeleb, who both live with hemophilia A. All three of them approached hemophilia in very different ways when they were confronted…
One thing that moves me is watching my sons find pockets of time when their bleeding disorder doesn’t take center stage in their lives. During these periods of freedom, time seems to suspend itself for a moment, and Julian and Caeleb are able to live their best lives without worrying…
Recent Posts
- Guest Voice: Using hemophilia pain and tribulation to lift others up
- When the son with hemophilia becomes the caregiver to his father
- Now that my sons are adults, I must pause instead of pouncing
- Hemophilia A treatments may shape children’s immune responses
- When job stability became a form of caregiving
