Last night, I dreamed that I attended a doctor appointment for my wife, Cazandra. It was a follow-up to discuss lab results requested at the initial meeting. The doctor entered the room and shared treatment strategies. She told Cazandra that she wanted to try a new medication to help…
In the Twinkling of an Eye - a Column by 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.
Recent Posts
- Growing up before treatments for hemophilia were safe, part 3
- Early prophylaxis tied to less joint damage in severe hemophilia A
- I tell my son, ‘When you’re eating an elephant, take it one bite at a time’
- Holding space for grief and love in the hemophilia community
- Hand swelling is first sign of aquired hemophilia A for new mom: Report