New experiences at this year’s Bleeding Disorders Conference
Sharing my family's struggles during some of our darkest days with hemophilia
This year’s annual Bleeding Disorders Conference began a week ago in Atlanta and ended on Saturday. While it wasn’t my first such event, it brought several new opportunities. For one thing, as my wife, Cazandra, and I packed for the event, I felt mixed emotions. At recent conferences, I’d missed seeing many friends. It was as if we’d passed the torch to another generation.
Fortunately, I discovered a mutual admiration society as Cazandra and I participated in breakout sessions and led a symposium titled “Finding Our Way Back to Each Other.”
As we prepared for our presentation, I looked at my beautiful wife and said, “Can you believe that we’ve never shared our experiences in this type of situation before now?” We’ve led worship services together at church, but not about hemophilia, the condition our sons, Julian and Caeleb, have. We relied on our experience leading congregations to help make our presentation seamless.
One of my favorite moments from our session was when Cazandra showed a photo collage of our family. “This is our family: Joe, Julian, Caeleb, and me,” she said. As she changed the slide, I stopped her and said, “Wait! That is not our entire family. You forgot Laggie and Hildie.” Those girls are part border collie and part Australian shepherd.
Our presentation
The audience laughed, but then we left such light moments for a while to turn to the main idea of our presentation. We discussed how Caeleb, our youngest, had many bleeds in his younger years that sent him to the hospital. In our frequent visits to the emergency room, we realized that our relationship was suffering because of our changing schedules, which created too much time apart.
We shared how Cazandra handled these mental and emotional difficulties by writing and speaking. I, on the other hand, noted how I’d shared nothing of depth with most people.
I participate in an interdenominational group that a therapist facilitates. During some of Caeleb’s early years, from when he was 6 to 9 years old, we frequently visited the sixth floor of the special pediatric unit of the University of New Mexico Hospital. Cazandra and I would take turns sleeping in our son’s room. We learned that the maximum number of days we could do that was three.
As we switched places, we met in restaurants to discuss our children’s schedules, when to trade places, and who needed to drive Julian to play practice or voice lessons. Our conversations seemed to exclude one question we needed to ask each other: “How are you doing with this?”
We shared how we fought to overcome our sense of separation by calling the middle floor in our split-level home an electronics-free zone. To our surprise, once we set aside our distractions and began to focus on ourselves, all of us in the MacDonald household looked forward to our time talking and listening as we shared the ups and downs of our days. Julian and Caeleb asked to meet the most. There seemed to be something inviting, even magical, as we charted out a sacred space in our home.
In addition to our talk being the first time that Cazandra and I presented our stories together, we also met Chris Comish, the founder and CEO of Bionews (the parent company of this website), and Ethan Ash, its senior vice president of business development.
We spent a lot of time getting to know one another, and as I saw these two mighty men from Bionews leave the event, I felt proud to be part of such a fantastic team. I discovered two men who want to make a positive and healthy difference in the world. Their leadership encourages me to continue putting out the best content I can.
The final thing I discovered came from within. As Cazandra and I shared our story, I stopped several times as my emotions seemed to boil beneath the surface. I realized the significance of sharing the most sacred parts of myself with a group I didn’t know.
I hope that people in the room that day identified with at least a nugget of our story. Maybe, just maybe, my words spoke into the soul of someone who needed to hear a little good news. Perhaps we led our blood brothers and sisters to an awareness that they’re not alone. The greatest gift we could offer is to remind them that we’re a family.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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