Preparing to share our story at the Bleeding Disorders Conference

Opening up about my family's journey prompts anxiety

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by Joe MacDonald |

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My wife, Cazandra, and I will give a presentation titled “Finding Our Way Back to Each Other” at the National Bleeding Disorders Foundation’s upcoming Bleeding Disorders Conference. I invite anyone in the Atlanta area on Friday, Sept. 13, to come and hear what we have to say.

The central part of our conversation will detail some of the struggles we’ve encountered on our journey with hemophilia. Both of our sons, Caeleb and Julian, live with the condition, and the challenges we faced in their younger years left all of us feeling isolated. Cazandra and I will conclude by sharing how we found our way back to each other.

While I enjoy working with my wife, I must admit that I’m a little anxious about sharing the road we traveled to rediscover each other. Thankfully, writing this column every week has helped me process my feelings and understand the differences in our responses to trauma. I’ve learned that when I experience a crisis, I search for cover until the storm passes. Cazandra, on the other hand, looks for ways to connect with her community — a behavior I admire.

I realize that my anxiety stems from the fear that I won’t be able to make it through the presentation without crying. We plan to share the scariest, most intimate parts of our journey with a bleeding disorder. Sometimes there’s humor while other moments accentuate fear and heartache. But hope will always be our foundation.

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What I plan to share

Delivering a sermon is one of my greatest strengths as a pastor. I can focus on Bible stories and any spiritual issues that arise. Speaking at the Bleeding Disorders Conference will be quite different. I can’t hide behind churchy words and stories. The people who come to listen will want to hear about how my family navigated the worst of times with a bleeding disorder. While faith is as much a part of me as the air I breathe, my intended audience hopes to hear experiences with which they identify.

Still, I’ll share that my faith is my source of strength. My belief in something greater than myself is how I broke out of the isolation I felt and recovered from during the trauma of my sons’ hemophilia. That’s a lesson I hope to pass on to Caeleb and Julian. By seeing my faith in action, they’ll know that there’s somewhere they can turn to for courage in the face of life’s difficulties.

I hope our family’s story will resonate with the audience, and that Cazandra and I will be able to offer the hope some listeners may need. Perhaps other couples will realize that their own journey has driven them apart, prompting them to start down the long road back to each other.

We want to remind our community that there is a way back from isolation. The lessons we learn during the difficult, lonely seasons can build us up, allowing us to build stronger bonds with our loved ones when we return to each other. Home may have a richer, more profound meaning than it did before.

My family shares a rich and deep love for one another. We give each other space when needed, but seek each other out to offer support. I no longer live in the solitary confinement of isolation. My family’s health, both physical and mental, is my main concern. We MacDonalds are a strong and vigorous bunch. We play hard, but we also love the same way — with a ferocious commitment to the well-being of everyone in the house.


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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