A theater production with my son helped me see him as an adult

The past two weeks have been especially busy as I produced and directed the musical “Honk! JR.” in my community.

Many children who’ve worked with me for years participated in the production. I can’t count the number of children’s theater programs I’ve directed over the years, but I do know that every one of the productions holds a special magic for all involved as we’ve created a space for up-and-coming stars. Each show’s goal is to foster a love of the arts in each child.

I remember the many productions my oldest son, Julian, acted in. His love of the arts was apparent as he honed his skills playing various musical roles, including Snoopy in “You’re a Good Man, Charlie Brown” and Jesus in “Godspell.” The moments working with him are some of my best memories as we shared a common love of theater. In many ways, I felt my job was to pass the torch to him and let his career capture the spotlight. The passion I had to perform now belongs to my very talented boy.

This year I needed to find a stage manager for “Honk! JR.” As I thought about who would make a good recruit for the position, I thought of my youngest son, Caeleb, now 17. I asked him if he’d take the job, thinking he’d turn me down. To my surprise, he agreed to take the job.

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Part of me had a little fear that things wouldn’t work out. I thought Caeleb would remain detached, making me angry because he wouldn’t concentrate on the show. But I’m happy to say he proved me wrong. He made himself available to the cast and me and often helped children run their lines and coached them on inflections and other necessary parts of their performances. In short, he was a natural stage manager.

In the middle of the second week of rehearsals, Caeleb, who like Julian has hemophilia, woke with horrible pain in his right knee. Many years of continuous breakthrough bleeding caused a wearing away of cartilage, and he’s often complained of discomfort.

I woke him so he could prepare for rehearsals, and he said, “Dad, I don’t know if I can make it today. My knee is killing me.”

My first thought was to tell him to get out of bed and deal with it. I’m happy to say that constraint ruled the day. I looked at him and said, “Son, I know you hurt, but I want you to go. Take your medicine, and if you feel better, Mom can take you to the rehearsal a little later.”

I left the house thinking that Caeleb wouldn’t show up that morning. “Damn, hemophilia,” I thought to myself. “I just wanted one thing to occur in my boy’s life without a bleeding disorder rearing its ugly head.”

We’ve learned that my son’s bleeding disorder is an equal opportunity intruder, however. It doesn’t care about our plans. Hemophilia will make its presence known, whether or not we invite it into our lives.

The cast started rehearsing, and less than an hour later, Caeleb arrived, using a cane to help him navigate the world. His medication had helped relieve his pain, so he’d asked his mom to bring him to rehearsal.

When he came up to me, I wondered how he felt. His knee still hurt a little, he said, but he was OK. I smiled and told him I was happy to see him.

After the rehearsal, I told him I was proud of him and knew it must’ve been hard to come do his job. He looked at me and said, “Dad, I knew I had to come because I cannot let hemophilia get the best of me in the real world.” I told him I was a proud papa. There may be times when the pain is too great, and Caeleb can do nothing but sit still. But this time only called for medication and patience.

The children did a wonderful job this year presenting “Honk! JR.” I was proud of them all, but one of my favorite joys in directing the show was the work of my 17-year-old son. I saw in him a young man with enormous potential, with wisdom far beyond his years.

I laughed as I realized it took a children’s show to allow me to see the amazing adult taking the place of the little boy I used to know.

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.