How a fear of inadequacy affects my ability to respond to crises
When faced with a challenge, my first thought is often 'I can't do it'
My oldest son, Julian, recently approached me and asked, “Dad, can you play this song for me on the piano? I have to post a singing audition tonight.”
Panic filled my body. I responded, “Oh, Julian, this song has too many fast chord changes.” He walked away, trying to find a selection that would prove more accessible for me. I took a breath, looked at the music he’d given me, and asked for a few minutes to study the piece. I had to give it the old college try.
I thought back to some of the difficult times I faced when hemophilia reared its ugly head in my house. Both Julian and my youngest son, Caeleb, live with the bleeding disorder. I’d responded to Julian in the same way that I responded to crises when my sons were younger: “Oh, I don’t think I can …”
My saving grace always came when I stopped, took a moment to breathe, and began to craft a way forward. When I faced my fears head-on, I discovered I could find a solution. I just had to be still and look for one.
Overcoming a fear of inadequacy
Never was my ability to find calm amid a storm more real to me than when Julian had his first soft-tissue bleed in his hand. My boy was 1 year old. He must have hit his hand on a piece of furniture, and when he started screaming in pain, I almost passed out. His beautiful hand swelled up to the size of a tennis ball. My wife and I knew that we needed to immediately visit our local hospital’s emergency room and inform the registration desk that our incredible little boy needed an infusion of factor VIII.
As we made our way to the hospital, thoughts of hopelessness overwhelmed me. Hemophilia was new to us, though we’d read as much as we could regarding treatment and common issues related to my son’s bleeding disorder. While becoming informed helped, it didn’t relieve the anxiety we felt as we walked in and notified the desk attendant that our son had a bleeding disorder.
A nurse came to see me, and his response snapped me out of my fear of inadequacy as I was forced to lobby on behalf of my son. I told the nurse that Julian had factor VIII deficiency, also known as hemophilia A, and needed treatment immediately. The nurse asked me to sit down and said that he’d be with our son quickly, noting that patients who were sicker than Julian were waiting.
My response to the nurse was not too kind. I said, “Look, you better get someone to infuse my son with the proper medication, or else I will sue you and this hospital.” My wife, Cazandra, recognized that this wasn’t my usual reaction to a complicated situation. She whispered in my ear to meet with her so we could discuss how to get Julian what he needed. I backed away from the nurse and addressed the situation privately with Cazandra.
As she calmed me down, I realized that I’d let my fear show through. I knew we’d taken our son to the right place, but deep inside, I felt like a failure. The anxious, unwanted voice in my head was saying, “Julian, I love you, but I’m frustrated because I cannot provide the treatment you need.”
Much like my hesitancy to play a complicated song, I responded by thinking, “I cannot … .” As a father, words of inadequacy and impossibility frighten me more than anything else. A son should always be able to turn to his mom and dad to find solutions for his most complex problems. We’re his main shelter in a storm, the protectors who will always find a way to keep our child safe and healthy.
Nearly three decades ago, we found the right solution to help with Julian’s bleeding. We went to our hemophilia treatment center in the next building and showed Julian’s hand to a clinical nurse, who acknowledged it was a soft-tissue bleed. The nurse found a dose of factor VIII, searched for a vein, and infused my boy. Within a couple of hours, Julian’s hand was almost back to its normal size, and by the next day, the swelling was gone.
All became right with the world once I found a way to play the song of a bleeding disorder.
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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