A Fundamental Lesson From a Wise Young Man With Hemophilia
Nothing makes me happier than when my oldest son, Julian, is home and my family is all under the same roof. We cook, laugh, and watch movies. My happy place is with my husband and two sons.
One night over dinner, our conversation moved toward the high school band program of my youngest son, Caeleb. He eagerly talked about the music for the fall marching show and how his private teacher is helping him work out his parts on the synthesizer. Then something interesting happened.
Julian, 25, loves music and lives with hemophilia like his little brother. He asked Caeleb if he’d considered trying out for drum major next year. Caeleb and I looked at each other with the same thought: The pain in his right arm would make it extremely difficult. Then Caeleb began to say that his part on the synthesizer was too important and that not being a part of the percussion pit wouldn’t be in the band’s best interest.
Julian immediately changed the course of the conversation and said, “If you want to try out, there’s a way to do it! They will find someone else to play the part!”
Again, I was taken aback by my adult son’s ferocity. He immediately took up for Caeleb and began to list ways he could conduct the band despite the pain in his arm. For a moment, I thought Julian would stand up from the table and slam his fist down.
As we talked more about the possibility of Caeleb auditioning for drum major, my husband and I chimed in with ideas. I mean, Caeleb’s mama was a fierce drum major in her day, so surely it’s in his blood!
Julian reminded us of a fundamental lesson. Instead of thinking about the things Caeleb cannot do because of his limitations from hemophilic arthropathy, we must focus on what he can do.
There are numerous ways to modify activities, and Caeleb has done a phenomenal job on his own. Even playing trumpet, for example, he found a way to use a music stand to help him support the instrument so his arm could rest.
This reminder from Julian about not giving in or giving up is one that I didn’t realize I desperately needed. When my own chronic pain and depression flare up, all I want to do is sit. But when I do my best to move, even if only from one room to another, I feel like I’m winning a battle.
My mighty warrior Caeleb has won many battles in his 16 years. While the struggles he now faces aren’t as painful as in years past, there are struggles yet to come. With the help of his dad, his big brother, and me, I have a feeling there is not much Caeleb won’t accomplish.
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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