Finding common ground with my son outside the hemophilia world

While preparing for his audition, I'm reminded of how far we've come

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by Joe MacDonald |

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My oldest son, Julian, is preparing for a big audition. He hopes the casting director will hear his submission and ask him to go to New York for a final, on-site callback. If the powers that be select him, he’ll perform in his first national touring production.

My son displayed a hopeful energy as he prepared to record part of a song, a monologue, and a short introductory message. He was determined to follow the requirements to the letter, afraid that failure to do so might disqualify him.

He turned to me and asked, “Dad, will you coach me through the process? I need your opinion because I know that you’re tough.”

I laughed and assured him that nothing would give me more joy than to help him land a role as a paid performer. I reminded him that I used to be talented. That line is an old standby in my family when I recall the days when I participated in many paid productions, hoping to make my living singing.

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As we started to work, a surge of pride and energy overwhelmed me as I thought about two things. The first was how much fun I had teaching and working with private vocal students years ago. I remembered the joy I felt when my students won local, state, and national events. I felt satisfied watching them work hard on their music, sculpting each detail. It was like creating a work of art.

My second thought hit me right between the eyes. While Julian and I were working together, we said nothing about his bleeding disorder. I smiled in disbelief, remembering times when all we could think about was his hemophilia.

Just keep moving forward

On Julian’s second birthday, he started running and fell, hitting his head on the concrete. I scooped him up in my arms, and we made a mad dash to the emergency room, where we spent most of the day.

While we sat in his room, waiting to infuse him with recombinant factor VIII to help him clot, I played the event over in my head. I asked myself, “Why did I let him run on the pavement? Did my mind leave my body?”

Sometimes, I need a long time to forgive myself when horrible things happen to my wife and children. I still hold on to decisions I made when my boys were younger. Without realizing it, I can steer myself into head spaces that do nothing but leave me feeling defeated. I tell people my mind is a dangerous neighborhood, so I shouldn’t go into it alone.

Those who deal with chronic illness know what it’s like to have joy ripped out of our souls. Through countless hospitalizations, surprise injuries, and changes in treatment plans, we encounter frequent disappointments that knock us to our knees. The trick we learn is to keep moving forward through the darkness to reach the light. During my most significant trials, I remind myself that the situation is temporary. If I hold on and do the next right thing, the rain will pass, and I will again embrace the sunlight.

As I returned to focusing on Julian, I experienced a moment of gratitude. He could’ve asked his voice teacher from college to help him, but he chose me, his dad. My son trusts my judgment in preparing him for an excellent opportunity to live out his dream.

I hit the record button and he started singing, soaring effortlessly to beautiful high notes. I know I’m prejudiced, but I couldn’t help but think, “Damn, that sounded great. It’s a wrap!”

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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