A Common Bond Helps Me and My Son Tackle Hemophilia

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by Joe MacDonald |

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My older son came to visit us for the first time since March 2020. Although we talk almost every day, there is nothing like seeing him in person. I didn’t realize how much my soul craved communion with him. We laughed and talked about how good it is to have a family feast and that this year mainly goes down as a time of difficulty.

One of the many things I enjoy doing with “MacDonald the Older” is playing the piano and singing. My son sings like a bird and has high hopes of making it on Broadway. I know I’m biased, but I believe he has the chops to make it in the performing arts industry.

Since I am on vacation, I agreed to play the piano for my wife’s church this week. (She is also a pastor.) My son led the musical portion of worship, and I put my fingers on the piano keys and felt like something guided my hands over the keyboard.

My son and I respond to each other musically with an inherent ability to understand what the other wants to do. I can hear when he wants to slow down, speed up, or change dynamics. Our harmonies blend so well that people have a hard time differentiating who is singing different parts. When we make music, we are one.

I think of his experiences with hemophilia and how I wanted to provide him with the best I had to offer. I know I failed many times, but I never stopped trying to do better regarding his care. We found synchronicity in our treatment when my son placed his hand down on a table, and with one stick, I found a vein and infused him with factor VIII.

Later, our unique collaboration changed as he took over his care, and the lessons my wife and I had provided allowed him to care for himself. I discovered the melodies of teaching as he learned to manage his bleeding disorder and sang his new song of confidence. Our oneness gave way to empowering my boy, as he utilized the gifts provided by my direction.

Early in my son’s life, he developed an inhibitor, which is a complication in hemophilia. In short, my son rejected factor VIII, therefore preventing necessary clotting. We resolved the issue by overwhelming the inhibitor with increased amounts of factor VIII, also known as immune tolerance therapy.

I learned that our medical process meant long days near the hospital in downtown Houston. We found ways to enjoy ourselves between timed blood draws by going to the zoo or museums in the area. Together, we discovered a love for adventure and memorable time with one another.

While the treatment of a bleeding disorder serves as a significant medical issue, the benefits of spending time together and investing in our relationship overcame the concerns of the inhibitor.

“MacDonald the Older” is now an adult and recently celebrated a milestone birthday. His plans include moving to New York and starting his career to perform on Broadway. I applaud his fearless approach to a passion that began in the womb. His love of music is one that we share, but we discover many more ways to bond through life experiences. I hope that we continue to share common interests that cement our relationship as he journeys through career dreams and medical needs.

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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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