Raising sons with hemophilia made me feel like a symphony conductor
Life often felt like the chaos of instruments warming up before a concert
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As a classically trained oboist, I enjoy attending the symphony, except when Wagner is on the program. I like to get there early and watch what happens before the performance starts. Musicians come on stage one by one, settle in, adjust their sheet music, and sometimes practice. A violinist works through a tough section while a trombonist plays long, warm notes. A flutist, a percussionist, and others join in, each with their own way of getting ready.
As the musicians warm up, the sounds grow louder. There is no melody or sense of unity. How can they all play at once without hearing themselves clearly? To most people, it sounds like chaos. Then the conductor arrives, and the stage goes quiet.
The conductor nods to the oboist, who plays an A note. The musicians use this note to tune their instruments, making another burst of noise. But soon, with the conductor’s guidance, everyone focuses, and together they begin to make beautiful music.
Living with hemophilia often reminds me of those moments before a symphony begins. To others, our lives might have looked like constant chaos, but we were just handling whatever came our way.
Conducting chaos
Raising two sons with hemophilia brought many chaotic moments. They each had a different experience, and sometimes I felt overwhelmed by the seemingly endless interruptions.
When one of my sons had a muscle bleed and had to stay home from school for a few days, it disrupted my work schedule. Infusions every two hours meant long, exhausting nights as I tried to keep him out of the hospital. Staying by my youngest son’s side during his many hospitalizations affected my routine and my oldest son’s schedule.
My youngest, Caeleb, is now 20. When I reflect on his early years with hemophilia and an inhibitor, I am amazed. He regularly experienced joint bleeds that lasted for weeks and required multiple ports. Did we really spend years traveling out of state for extra treatment? How did we manage more than 70 missed school days in second grade?
Each of these moments, and many others, felt like the noise and chaos of instruments warming up before a concert. Some days, it felt like every part of our lives was playing a different tune.
My husband and I became the conductors of our family. We could not stop the unexpected bleeds or pain our boys experienced, but we learned to focus on what mattered most in each moment.
We brought calm to stressful situations. This mattered because we wanted to show our sons how important it was to remain calm and clearheaded during emergencies. The routines we established for infusions, appointments, and treating bleeds helped make hemophilia feel like part of the family, not just an unwelcome visitor. Every medical event taught us to trust and depend on each other. Just as musicians trust the conductor, our family learned to trust the routines that kept us moving forward rather than letting the bleeding disorder take over.
A symphony warmup sounds like organized chaos. The notes are random and out of place, and there is no melody. Life with hemophilia has brought similar noisy moments, with bleeds resulting in weeks of sleepless nights at the hospital, unexpected surgeries, and interrupted plans.
But when the conductor stands on the podium and raises the baton — when my husband and I calmly implement our routines — all falls silent. The next breath brings beautiful music, as everyone is now on the same page.
I learned that peace is not necessarily the absence of chaos. Peace comes from holding on to what guides us through life’s difficulties. For my family, faith, hope, and love are the steady rhythm that keeps us moving forward.
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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