When I feel my son’s love of music, our bond is its strongest

As I sat in my chair at home, I heard Julian, who’s 29 and my oldest son, singing at the top of his lungs. Every note floated higher as if it would touch the clouds. My thoughts were interrupted, but I welcomed his sound, which fills my soul.

Julian expresses his gift of music with his entire body, surrendering himself to the needs of the music. He naturally separates ideas according to his interpretation of each phrase. Watching him as he so expertly expresses his thoughts and feelings is like being a part of a master class.

His music has always been a source of joy and comfort for him and for me. His voice has a way of filling the room with warmth and light, and his passion for music has brought us closer together. It’s in these moments, when he’s lost in his music, that I feel the strongest bond with my son.

Recommended Reading

March 12, 2020 Columns by Joe MacDonald

Music Is in the MacDonald Blood

When making music, Julian lives his best life; his hemophilia is but an afterthought that cannot rudely interrupt him. I hear him triumphantly overcome the fear of needles he had in his younger years, the many days of aggressively treating a low-titer inhibitor, and the soft tissue bleeds that wrecked his schedule and left him with bruises and swollen hands and feet. His resilience in the face of these challenges is a beacon of hope, showing that no ugliness finds rest when he focuses on his music.

Julian found music at an especially early age. I knew he was a musician when the doctor who delivered Julian asked me if I wanted to walk my son over to the warming table right after he was born. He screamed as loudly as he could until I started singing to him. My boy stopped crying and looked around for the familiar sound of my voice. I kept singing a lullaby that I still sing on occasion. I typically make it through the song without shedding a tear until I get to one line: “I’ll love you more than anybody can.”

Natural gifts + devotion = rare talent

As he grew, Julian’s love for music only deepened. He’d spend hours practicing his singing, often choosing challenging pieces to master. His dedication was evident in the way he’d spend his free time listening to various genres and styles, always seeking to broaden his musical horizons. His journey was not without its challenges, but his love for music always prevailed.

I wear the badge of being my son’s most outstanding advocate as something of an honor. Once when Julian was a toddler, he fell face-first onto concrete as he was running to me. I looked at my wife, Cazandra, and we agreed that he needed to go to an emergency room. I stayed at his side, trying to lighten the severity of the moment.

Our united front, our unwavering support, and our shared love for Julian made the situation bearable. Yet I could not stop thinking about the “what ifs” because they were frightening and unimaginable. I closed my mind to a brain bleed that could have had serious repercussions.

Musically, he made me proudest when I heard him take on songs that I sang back a million years ago. There’s a song that I became known for during the Christmas holidays called “I Wonder as I Wander.” A couple of years ago, Julian told me that he had a surprise and wanted to know what I thought about his choice of music. I smiled and stood at the back of the church as Julian sang my Christmas standard. He made the singing sound effortless. With each phrase, I listened to each note sound clear and beautiful.

After the service, Julian asked how I felt about his interpretation. I gave him a big hug and congratulated him on a job well done. He told me that he’d been nervous to sing that particular song in front of me because he’d heard me sing it through the years. “Dad, I worked hard to make it sound right,” he said.

I told him that he did his work just fine.

For me, there’s no better space than to suspend conversations about hemophilia to hear and see what my son loves. When I told him the story about singing to him soon after his birth, he responded, “I’m not surprised, Dad. All I want to do is sing. That’s what I was born to do with my life.”

“Thank you. Follow your heart,” I said, before adding, “Oh, yeah. Remember to take your clotting medicine, Hemlibra [emicizumab-kxwh], on the journey.”

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.