Joe MacDonald,  —

Many times when my sons were younger, I found myself overwhelmed by the constant demands of their bleeding disorder and felt that I had nothing else to give. The needle on my gas gauge was below empty. I felt as if I’d used every ounce of energy and couldn’t…

One of the unexpected issues I struggled with when my youngest son, Caeleb, faced many prolonged hospital stays due to internal bleeding episodes was loneliness. My wife, Cazandra, and I divided our time between the hospital and home life with our older son, Julian. As a result, we…

I love the final-night event of a national bleeding disorder conference. Different groups invite community members to play games, the meal is remarkable, and the dance floor begs for us all to gather and celebrate. After the highly informative events offered by leaders in the bleeding disorder community, friends…

Affirmation: one word with significant connotations. From the day we come into this world, we seek an acknowledgment that our presence on this planet matters. To be affirmed by those around us reinforces the idea that our contributions to our community hold special significance. When we hear others give…

Last week, my wife, Cazandra, my youngest son, Caeleb, and I attended the annual meeting of the Hemophilia Federation of America, held in San Antonio. The grassroots, national organization promotes the health and well-being of those who manage chronic bleeding disorders. While attending the conference, we engaged with…

This past week my adult son, Julian, made a decision that I didn’t like. I wanted badly to tell him how I felt and that his choice may not be in his best interest. I don’t think it’s essential to mention what he did as much as my reaction to…

I often tell people to check my refrigerator if they want to track the development of hemophilia care in my family. For example, when my sons were small, the medicine they required, factor VIII, took up a full refrigerator, requiring us to buy a second one. As for other…

My older son, Julian, and I share many interests. We are both musicians and sing the same voice part, lyric tenor. Many people who hear us sing together tell me that it’s difficult to determine who’s singing. Our voices blend as if they’re one instrument. Genetics has a lot…

In April 2018, I began writing this column. Over the four years that I’ve shared stories from my heart, I cannot believe that my family has endured many bad moments associated with hemophilia. Yet I’ve also chronicled the joyous times we celebrated, even in the middle of overwhelming darkness.

My sons reacted to hemophilia treatment in entirely different ways. My oldest son, Julian, had one port-a-cath, while my youngest son, Caeleb, had eight. Julian had two surgeries, one to place the port and the other to remove it, while Caeleb required 16 surgeries for port placements and removals.