Balancing joy and caution as my son prepares to sing in New York City
Pursuing a career as a singer and performer can be difficult with hemophilia
My oldest son, Julian, called me last Saturday evening with exciting news. He successfully auditioned to sing in a cabaret with a New York-based theater group. He’ll perform a solo at a West 34th Street theater near Times Square on June 26. I could feel the excitement through the phone as he shared the email he’d received. With overwhelming joy, he said, “Dad, I am making my New York City debut!”
I laughed with him, caught up in the wonder of the moment. I told him that this could be the start of something big. I would leave the conversation about health insurance and finding a job with benefits for another day. Unfortunately, the reality of managing a costly bleeding disorder like his hemophilia must eventually come up in conversation.
There’s nothing Julian loves to do more than sing and perform in musicals. I told him I knew he’d be a musician as soon as he came into this world. It’s in his DNA, as my wife and I met in college as music majors. It seemed only right to have a creative child who enjoys the art of music-making like his parents.
When I finished my conversation with Julian, I thought back to when I was his age. I shared his passion for performing in shows, and I thought that I’d one day sing in New York. Unfortunately, I didn’t have someone who motivated me and encouraged me to never give up. Instead, I surrendered my dream of singing professionally, only to achieve success in other areas of life.
Now it’s my son making his New York debut. I continue to be his biggest fan by supporting him in his attempts to launch a career in show business. Because we share a love of music, we speak a common language.
Once, he needed someone to teach him a tap dance combination for an upcoming audition. Immediately, Julian called me.
“Dad,” he said nervously, “could you help me learn a tap dance combination? I need it by tomorrow.”
I called him later that evening and informed him that I’d sent a recording of what he needed. I reminded him that very few fathers could ever have our conversations. We laughed as he admitted that I’d told the truth.
A balancing act
With all the excitement brewing about his next singing engagement, I can’t help but feel a little nervous about the situation. My boy, who’s now based in Texas, has talent, and his passion for music is highly contagious. But what about attention to his medical needs?
Julian doesn’t have the same hemophilia problems as my youngest son, Caeleb, but he still has the disease. Therefore, he must carry medical insurance to keep a good quality of life. He cannot afford Hemlibra (emicizumab-KXWH) or other medical care without health insurance.
Although many people starting out in his industry have to go without insurance for a while, just one month without coverage poses a significant risk for Julian. He must consider hemophilia when making choices for his future. He hopes to find a remote job with medical benefits that’s also flexible so he can audition or perform in a show.
Living with a chronic illness while pursuing a career is a delicate balancing act. One side wants to scream and celebrate, while the other reminds us to weigh the risks and rewards. I went full throttle into proud parent mode after hearing about Julian’s newest opportunity. Unfortunately, I must still wrestle with how to help him care for himself.
I find myself celebrating as a dad while still wearing my advocate hat. I must always consider his medical needs while finding joy in his successes. Every move forward in his career requires care and consideration. Sometimes it seems like I speak in contradictions. “Follow your dreams, but …”
I hope his every wish comes true and his first night on stage in New York City becomes one of many events. When all considerations for both career and health come to pass, I hope he experiences joy. I’m not talking about one isolated time when his heart knows he’s in the right place, but a continual state of being.
Good luck in the Big Apple, son. May your joy be made complete.
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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