My youngest son wanted to play baseball. “Come on, Dad!” he pleaded. “I will wear a helmet and knee pads and anything else.” I wrestled with how to answer him. My son had a considerable complication called an inhibitor. Failure to make the correct decision might cause a horrific bleed…
In the Twinkling of an Eye - a Column by Joe MacDonald
Boxes, boxes, and more boxes! We can’t seem to find a way to sift through the endless sea of those irritating but necessary cardboard contraptions containing pieces of our lives. We know that we cannot stop piecing together our lives in another place. Moving forward appears to be the best…
“Hey, Padre!” I hear those words, and all is right with the world. These words are what my eldest son calls me. I can’t remember when he started. All I know is when I hear that small phrase my pulse slows down and I remember that I am loved, and…
My son gets off the bus. I look at his face, hoping to see an indication of how his first camp experience went. Did he have a good time? What kind of life lessons did he learn being away from home for a whole week? I looked for answers…
My wife and I sat by the pool and watched our 3-year-old super fish glide through the water. The skill he displayed with a set of floaties wrapped around his arms took our breath away. Our son became one with the water as he swam across the bright blue surface.
I am originally from Texas, so I know the meaning of the word “team.” The Lone Star State reveres sports organizations like no other place in the country. Friday nights in the fall are overwhelmed with football, marching bands, and great times to visit with friends. Everyone gathers together with…
Some of my most enjoyable moments are guy times with my boys. We laugh, we attempt to keep the house in order, and we succeed, despite ourselves. My sons, who have my blood running through their veins, remind me that life will be OK; that any problem can be solved,…
Finding Answers Together
Both of my sons have expressed frustration at having a bleeding disorder. After experiencing a problematic infusion, each has cried out, “I hate having hemophilia!” While they are almost 10 years apart, the same response lets me know that they are “getting it.” Sticking a needle in a child’s arm…
Finding Our Way, with Community
I held my son, my firstborn, in my arms. From outward appearances, no one could guess that he had a bleeding disorder. Some moments, I forgot about his diagnosis. Life seemed to be moving at a healthy pace, and my wife and I invited the newest member of the…
My First Moments
There are moments that forever alter lives. Sometimes we celebrate educational goals, while others encounter the excitement of new love. Other times leave us breathless as we attempt to rise again from a catastrophic event, unsure whether we will ever recover. Whatever we experience, our worlds change and none of…
Recent Posts
- My husband still experiences seizures from a childhood brain bleed
- Little interest in gene therapy for many with severe hemophilia: German study
- With bleeding disorders, how do we know when pain isn’t ‘just pain’?
- 17-year-old advocate shares her NMOSD story to raise awareness
- Accommodations won’t keep us from enjoying a day at the museum