What my sons wish people understood about hemophilia, part 1
Julian, 30, says he didn't need to be in a 'plastic bubble' growing up
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First in a series.
This morning, my oldest son, Julian, 30, called me from Philadelphia, where he is living for two months before packing up his bags and moving again. He is a professional entertainer hoping to sing on Broadway one day. Currently, he’s on his first national tour for the musical “Saw” and living his best life.
We talked about show business, and I told him I knew very little about the industry because it has changed so much since I sang professionally. After discussing the ins and outs of his production, I asked him, “Son, if you could change one thing about how people understand hemophilia, what would it be?”
I asked for his permission to include his response in this column, and he agreed.
‘I felt like people took away my voice’
Julian asked if he could take some time to answer the question, but within two minutes, he responded: “I would want people to know that they did not need to put me in a plastic bubble.” He then shared stories about how, in elementary and middle school, teachers tried to protect him by not letting him participate in sports or other physical activities.
“I felt like people took away my voice and made decisions for me,” he said.
I apologized for making him feel that way, but he stopped me from taking the blame. “It wasn’t you guys. It was some of the adults at my school and in my community. I just wish they had let me decide whether to play or not. I knew they were looking out for me, but they never asked me how I felt about being sidelined. I knew more about hemophilia and my body than they did.”
I smiled and said I agreed with him, then shared a story from when he was 6 weeks old. “Your mom and I went to a follow-up appointment with her obstetrician, Mark Jacobs,” I said. “After he examined her, he asked us to meet him in his office. He could tell that we still looked defeated by the diagnosis and unsure how hemophilia would play into our lives.
“He sat us down and showed us an article from the New England Journal of Medicine describing hemophilia. The entry had only three paragraphs. He informed us that the short article was all the information that many doctors received about the bleeding disorder. He told us that we would become far better experts in the field than most physicians.”
After I finished telling him the story, Julian reminded me that Jacobs was right. “My problem,” he said, “was that people got scared to treat me like everybody else. I hated, and still do, that feeling of being special for all the wrong reasons. I want to be known as a very good singer and not just some poor kid with hemophilia.”
As Julian shared his thoughts, I could hear the frustration in his voice. I wanted to show him I understood and cared, so I acknowledged his feelings carefully. I told him, “Son, I wish I could take your pain as my own, but I can’t. I hope you find a way to let the hurt go and embrace who you are now.”
He reminded me that becoming who he is now included acknowledging the hurt he felt. I told him he was right and that maybe being whole meant embracing his whole self, warts and all. I could tell that he wanted to stop the conversation, so when he said, “You’re right, Dad. My throat does feel a little froggy,” I let the moment breathe.
A safe place to speak honestly
We laughed together, and I asked him if he was OK. He said yes, though he admitted he was surprised by how deep the conversation had become because of one question. “Obviously, I still have hurt feelings about how other people treated me without asking what I wanted,” he said.
I replied, “That’s OK, buddy. This is a safe place. I’m glad you feel comfortable enough with me to speak honestly.”
We ended the conversation with our usual comic banter. Before we hung up, Julian paused and said, “You know something, Dad? You’re not that bad.” I laughed and reminded him I was always there for him.
“You can always come to me when you need a safe spot to land,” I told him. “I love you more than you can understand.”
Next week, I’ll share my youngest son Caeleb’s response to the same question I asked Julian.
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 consult your physician or another qualified healthcare 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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