Music helped us find joy after my oldest son’s hemophilia diagnosis
Navigating fear of the unknown with some help from the Spice Girls
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Easter Sunday was wonderful. The pipe organ at our church hadn’t worked in four years, but thanks to generous donors, it was finally restored. We revealed it on Easter with a brass quintet and choir, and the music was truly beautiful. As a classically trained oboist, I am deeply moved by hymns played on the organ.
During the performance, I looked up at the beautiful stained-glass window at the back of the church. The powerful melodies filled the sanctuary, making the morning feel even more special.
Even though I love classical music, I enjoy and appreciate most genres. I love ’80s hair bands, Janet Jackson, and Lady Gaga. Currently, I can’t stop listening to Myles Kennedy and Mammoth. What amazes me about music is how it brings back memories, both happy and difficult.
When I hear ’80s country music, I remember the cute, blond cowboy I once had a crush on. Tuck and Patti and Ella Fitzgerald remind me of my college years, when I started dating my husband, Joe. The Spice Girls bring back memories of a stressful time that eventually led to happiness.
Replacing fear with joy
My first son, Julian, was born in 1996, and I expected him to be healthy. After his circumcision resulted in prolonged bleeding, doctors diagnosed him with severe hemophilia A. The news was shocking and scary, especially since I didn’t know of any family history.
Typically, the first months with a new baby are joyful. However, after Julian’s diagnosis, I often let the seriousness of hemophilia detract from that happiness. After Julian’s first bleed, our first emergency room visit, and his first infusion, I realized this disorder would always be a part of his life. Still, I knew letting hemophilia take over would only hold him back.
In those early months, Julian sometimes needed an infusion after a fall or a bleed. A home-care nurse would visit because his veins were so small, and my husband and I weren’t ready to learn how to do the infusions ourselves. To help Julian get through the scary moments of a “stick,” Joe came up with a plan to show him that needle sticks were just a part of life. Without realizing it, he also helped us manage our own fears as parents.
The song “Wannabe” by the Spice Girls had just come out. Whenever Julian heard it, he’d look at me with big eyes and start giggling and dancing. It quickly became his favorite. Joe began making up new lyrics to popular songs during infusion time, like, “If you wanna be my lover, you gotta get with my factor!” These silly versions made us all laugh. While the nurse tightened the tourniquet and went “vein shopping,” we kept singing, and before we knew it, the infusion was over.
Looking back, those first years with hemophilia were tough. I was always worried about a bleed. If Julian’s day care called, I had to drop everything at work to check on or pick up my son. Gradually, though, as time went by and we met others in the bleeding disorders community, the fear started to fade, and joy became a bigger part of our lives.
Even now, whenever I hear the Spice Girls or see one of them on TV, I can’t help but smile. I remember my son in his T-shirt and diaper, watching TV and dancing along when they performed.
Music helped my family get through the fear of the unknown during those early days. Involving melodies and laughter in each infusion reassured us that joy can grow anywhere, even amid uncertainty.
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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