The gift of music provides my son a break from hemophilia
An afternoon of pure joy serves as an important reminder
I arrived late for the concert. An usher whisked me to my seat, as my husband and our son Caeleb had already arrived. As I walked down the aisle, feeling very conspicuous in my clerical collar (I didn’t have time to change), I noticed the backs of hundreds of heads in their seats. Most were sporting gray hair. Yes, I stood out, because who wears a clerical collar to a concert? But more important, how many 18-year-old men want to spend a Sunday afternoon listening to the Glenn Miller Orchestra?
My son, Caeleb.
Caeleb loves big bands and swing music; the ’40s station on SiriusXM is his favorite. Caeleb has a deep love and appreciation for music. I hate to admit that he doesn’t care for Michael or Janet Jackson (a knife to my heart) or know who Jagger is, per Maroon 5, because my son has an old soul. I believe he is this way because of the challenges and struggles he’s dealt with over the years at the hands of hemophilia with an inhibitor.
During intermission, I noticed that Caeleb was using his cane. It was humorous because he fit in well with this walker-and-cane crowd. Yet in the same moment, my heart hurt. Watching my son hobble around was a reminder that he’s been through challenges most adults will never encounter. I wouldn’t wish for any parent to experience it with their child. But on that day, one moment changed my perspective.
What joy brings
When the second half of the concert began, I caught a side glimpse of Caeleb. His eyes were glued to the stage, like a little boy seeing presents under the tree on Christmas morning. His wonder and amazement at watching and hearing these incredible musicians were almost too much to contain. He’d often lean over and tell me the name of the song being played; he even started clapping along with the audience in rhythm to “Pennsylvania 6-5000.”
In Caeleb’s profile, I witnessed pure joy.
I learned an important lesson that afternoon. Instead of hunkering down at home, I need to be intentional about getting my son out into the world. It’s too easy to stay at home so that Caeleb can rest. Yes, that’s important, and Caeleb’s pain is more manageable when he’s at home, thus giving us excuses for not doing different things. The many years of being in the hospital and housebound because of mobility issues have caused my family to limit our outings.
But despite Caeleb’s chronic pain, I believe it’s important for his heart and soul to experience the world.
The members of the Glenn Miller Orchestra gave me a gift on that day. The music brought me joy, but I experienced something even better: My son received an infusion of joy, too, without pain, homework deadlines, or the pressure to get to school. He savored the afternoon of music that brought pure happiness.
I’m grateful to have experienced that afternoon’s concert with Caeleb. Joy and happiness make the bad times bearable.
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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