Attending the theater with my son reminded me to focus on joy

My youngest son, Caeleb, and I recently saw an outstanding production of the musical “Hamilton.” As we watched the performers onstage, I glanced at my son and saw his face glued to the action. He appeared entranced by the dancers and singers moving across the stage with catlike precision. We both got swept up in the incredible pageantry and energy that burst through the “fourth wall” and out to the audience. After the show, Caeleb and I agreed that the musical was dynamic and had captivated us from the downbeat to the ending gasp of Hamilton’s wife, Eliza.

The show centers around Alexander Hamilton and his incredible determination to overcome adversity. Pride proved his fatal downfall, but his legacy has survived for centuries.

Hamilton’s story made me think about my boys, who both have hemophilia, and how they’ve also triumphed through challenging circumstances — particularly infusions.

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Facing adversity

I remember how Caeleb and my oldest son, Julian, each overcame a very intense fear of needles. The answer to their struggles came with an awareness of their power. Julian concluded that boys his age didn’t pull back when infusing. He reclaimed his strength by remaining still, even in the most troubling circumstances.

Caeleb took control by quieting his mind at his own pace. I stood aside and waited for his thumbs-up — the signal that he was ready. Sometimes it took 30 minutes, but other times, he was ready sooner. I never hurried an infusion along, but instead took my cue from him. Surrendering control to my son saved us time and the emotional toll of holding him down.

Unfortunately, we sometimes encountered other obstacles. While pushing factor VIII into a vein, I’d occasionally notice a bubble form, and Caeleb would shriek in pain. I knew what his cries and the protrusion meant. The needle was no longer in the vein, and he could feel the medicine entering a space that couldn’t accommodate the extra liquid.

I once asked Caeleb what it felt like when the needle lost its place in his vein. He told me, “Dad, it feels like the place we infused is on fire.” I hurt for my boy, promising him we would be much more careful the next time we needed to go “vein shopping” for an infusion.

Embracing joy

Like Hamilton, my sons have risen above unimaginable circumstances to rewrite their narratives. Despite all the challenges Hamilton endured in his lifetime, an incredible celebration of joy emanated from the stage. Similarly, I feel immense happiness as I reflect on the bravery the fantastic MacDonald boys have demonstrated over the years.

As a caregiver and father, I feel incredibly blessed that we no longer have to worry about accessing my sons’ veins, thanks to advancements in hemophilia treatments. Gone are the emotionally draining times when my wife and I had to hold our sons down and pray that the vein we hoped to access would withstand the intrusion of a long, sharp needle.

Although we still seek a cure, our fearless approach to self-care continues to triumph in the face of any adversity that raises its ugly head in the hemophilia world. I thank God that my sons live in a world where their quality of life continues to improve, and that they’re gaining confidence in their ability to maintain control when faced with obstacles.

As Caeleb and I left the theater, we couldn’t stop talking about the performance and the fantastic actors who shared themselves with us. We shared in the excitement of the show and expressed our gratitude for such a wonderful evening.

As we laughed together, I thought, “This is what life’s about: my son and the wonderful experiences we share. Not the challenges of hemophilia.”

“Hamilton” reminded us that the world possesses terrific possibilities, but we must make our way through the difficult times before we can triumph in the good ones.

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.