Old DVD recordings bring back forgotten memories

Recently, I came across an old DVD recording of a Fourth of July celebration on a hot summer day in Baytown, Texas. Many families had gathered on blankets and lawn chairs to celebrate with one another and watch the evening’s entertainment.

The first star of the production was my oldest son, Julian. He’s now 27, but in the video, he’d just turned 1 year old and was running among his papaw (my wife’s father), granny (my mother), and Aunt Tawn (my sister). Laughter filled the air as my stinky little boy commanded the field.

The camera finally turned to me; I was not in summer attire but in a tuxedo, as I was singing onstage with a 40-piece orchestra at an open-air theater in the park. I sang six Lerner and Loewe songs with the group and loved every minute of holding an audience in my hands.

As I continued to watch the video, several things came to mind. First, hearing my mother’s voice was music to my ears. She died in 2011, and I miss her dearly. The second thing I noticed was the joy that poured out of my family, with Julian the center of attention. Although his hemophilia was a silent presence, the day focused on giving thanks for my fantastic son.

I watched as “Juli-boy” ran to his Aunt Tawn, gave her a great big hug, and placed his head on her lap. In her arms, he felt secure and knew he was loved every time he looked into her green eyes.

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The camera turned to my wife, Cazandra, and I saw in her face a few moments of respite from the worries that a bleeding disorder can bring. She seemed happy, as if all was right with the world. The stress she often felt from infusing our son and ensuring we had enough medical supplies for his treatment had subsided for a little while. She could breathe and take in the beauty of the day.

When I saw myself singing, I thought about the joy I exuded onstage. Even though I wore a tux, I didn’t care how much I sweated because I was singing in front of musicians I’d respected for many years. We were a mighty unit as we shared our gifts with an amazing crowd.

As I sang “Come to Me, Bend to Me” from the Broadway musical “Brigadoon,” I looked out over the crowd and saw my son pointing at me. Cazandra later told me that he said, “Look, Daddy is singing.” We shared a tender moment as I pointed back at him. I felt blessed beyond words that I was able to share the most sacred part of myself with him. Little did I know that he’d one day become a much better musician than his father.

I came to the end of the DVD and sat silently for a moment. I thought of the 33-year-old man standing onstage, frightened by what the future might hold for his son with a bleeding disorder. At that time, all seemed right with the world, and we continued our celebration. We stayed to watch fireworks, dance to music, and eat delicious treats.

What we didn’t know about the journey to come

Our journey through the world of hemophilia was just getting started. (Ten years later, my youngest son, Caeleb, would also be diagnosed with the bleeding disorder.) We knew nothing of the struggles that would come our way as we faced many hospitalizations, managed port-a-caths, and found answers to complex medical questions. We learned the most important thing we could do was to embrace each moment and love one another with a veracity unmatched by others. We took one step after another down a road less traveled.

For our family, hemophilia complications often proved difficult, but overcoming them was worth the effort. Through it all, we found special moments to connect and recharge. Our moments of solitude became more precious as we encountered each problem. Our belief that life doesn’t remain stagnant became our family mantra. Everything must change, and this attitude informs how we view the world.

I returned the DVD to the shelf, thanked God for holy moments, and continued on my 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.