Watching my son as he sings makes my heart smile

I feel pride as he manages a performance career alongside his hemophilia

Joe MacDonald avatar

by Joe MacDonald |

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When my oldest son, Julian, moved back home, he knew that I, in my Methodist minister role, needed a couple of singers to help lead a 9 a.m. worship gathering. I debated whether to ask him if he could help me out, but before I could utter a word, he asked me if singing at the early church service would help me. I smiled and said, “Anytime I hear you sing, it is a great day.”

My son missed only three gatherings until he left recently to do a show. The congregation and I appreciated his involvement in the church and dedication to bringing good music to those worshipping on Sunday mornings.

Last Sunday was his final time singing in the church until a planned return in late August. (Not so) secretly, I hope that he receives another call to perform on stage during the fall. Meanwhile, congregation members expressed their gratitude and wished him well on his new adventure.

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By taking control of his health, my son is able to pursue his dreams

John Wesley, founder of Methodism, once said, “I felt my heart strangely warmed.” I agreed with the Rev. Wesley’s sentiments while watching faithful people share warm wishes for a great summer in the Appalachian Mountains of North Carolina.

The last performance this spring

As the musicians began playing the last song, I noticed as two singers who typically perform stepped aside and let Julian lead by himself. As I turned to see him, my eyes filled with tears. As I observed him sing, I saw the light around him, as if he had stepped into a space that confirmed he’d found his heart’s desire. My son lights up when asked to sing anything. Musicianship poured out of his soul, much as I experienced many years ago.

For a moment when watching Julian, in fact, I saw myself. I was once a 20-something whippersnapper eager to make my way in the world by singing on Broadway. Life had different plans for me as I abandoned my original dream and answered a call to ministry, which continues to bring fulfillment in ways I could never have imagined.

I tell people that we make plans, and God laughs. My journey took several detours, each teaching me new things about myself.

But in those few minutes, when all seemed right with the world, I didn’t think about my son’s hemophilia, his medicine (Hemlibra, a brand name for emicizumab-KXWH), or any aftereffects of a prolonged bleed.

I smiled as I looked up and said, “Take that, you monstrous bleeding disorder! You may touch my life in many ways, but when it comes to my boy’s love for music, that is off limits to anything that would prevent him from sharing his gift!” I smiled as I realized that I surrendered the role of advocate to let the dad in me take care of those seeking to cause Julian harm.

One of the most extraordinary things I see is how my son continues to manage issues related to hemophilia while navigating his singing jobs. It’s like art as he’s become his own advocate, fully aware of what needs to be resolved while managing a life that involves treating a chronic bleeding disorder while building a solid career.

Maintaining a healthy and fulfilling life requires people with hemophilia to juggle many balls in the air. They must be flexible to adjust plans when something unexpected happens, like an unwelcome spontaneous bleed or pain from other complications.

As the last song ended at Julian’s final church service for the spring, I gave him a big hug. I reminded him how much I love him and will miss him when he leaves. I also told him that I’m proud of the man he’s become.

Somehow, I felt a peace overwhelm us as I realized a chapter in Julian’s life was ending. He now prepares for another phase of a fantastic adventure.

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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