Music was healing during the darkest days of my son’s hemophilia
How Caeleb, then 7, helped me find my way back to my favorite tunes
I have a variety of satellite radio stations saved as favorites in my car, with Broadway, The Blend, Classic Rock, The Groove, Symphony Hall, and ’80s as the ones I enjoy the most. The ’80s music transports me to my high school days, which were filled with beautiful memories. Certain bands and songs invoke specific friends and experiences that warm my heart. Yet some songs remind me of not-so-wonderful times. These are the songs I must work to enjoy.
When my youngest son, Caeleb, was a baby, his severe hemophilia A and inhibitor dictated everything, leaving us only enough time to focus on the necessities. My husband and I worked to ensure our oldest son, Julian, was on schedule with school and extracurricular activities. Crucial household tasks included keeping food in the fridge, washing clothes, and feeding the dogs.
During this lengthy season of living with hemophilia, music did not transport me to better days. Instead of listening to music, keeping up with pop culture, going on dates with my husband, and simply enjoying life, my world stopped, and I could hardly breathe. I particularly missed Lady Gaga, whose early albums were released as my world was closing in around me.
When I was driving to and from the hospital or appointments with Caeleb, my mind was a scary place. I talked to myself, cried out in anger, and wept without making a sound. I even blamed myself. I didn’t want Caeleb to know about my sorrow, though, so I kept music playing in the car. But my mind was churning out new yet familiar hits: “Will This Bleed Ever Stop?” and “Why Is This Happening to My Son?”
Lessons from my son
I began to slide into a pit of despair as I witnessed Caeleb in pain week after week. But my son, then 7 years old, was doing the best he could each day, and I realized I needed to do the same. Being a positive force in a time of pain and hopelessness is exhausting. I started each day with renewed energy, determined to make the best of what was to come, yet the anxiety of what might happen was often too much.
Even though Caeleb missed school, his friends, and greater mobility, he maintained a positive energy. He didn’t focus on what he couldn’t do. He just kept moving along, doing the next thing he could.
While music was my sanctuary, Caeleb’s was building Lego sets. I watched my son build with Legos for hours, rarely stopping as his little fingers grabbed each piece. His concentration and excitement were impressive — never mind that he couldn’t straighten his swollen leg!
My son became an architect as he built cities and spaceships. Those building blocks became his saving grace. Legos helped my son through some of the worst days of his life, and that taught me a beautiful lesson.
When I saw how those bright, colorful blocks transformed Caeleb, I knew I needed to change something. That’s when I started listening to my music again.
Finding my way back to music
From that point on, music often shook my car windows as my favorite ’80s hair bands played. An old love song would result in tears streaming down my face. And when the tunes prompted memories of old friends and good times, I sang at the top of my lungs, giving thanks to God for another moment.
Music helped me navigate through the darkness and find the light. It gave me the strength to move forward and share my hope with others, especially my son.
Caeleb is now an 18-year-old high school senior. While those weeks and months in the hospital are a thing of the past, I maintain vivid memories of those days. But now, when hemophilia shows up and wreaks havoc on my life, I approach things a bit differently.
I turn up the music, cherish the memories (both good and bad), allow tears to flow, and sing like no one’s listening.
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.