From surprise to strength after a hemophilia diagnosis
I recall the day a choir announced a baby and I learned about my son's disease
It’s been almost 30 years since I first discovered the joy of pregnancy. I can still recall my excitement as I left the doctor’s office, clutching the positive test in my hand. I was eager to surprise my husband, Joe, who was teaching high school choir. I called his office, hoping someone would answer the phone. My heart raced as a student picked up.
I told the student to deliver a message to Mr. MacDonald immediately. “Tell him Julian wants to talk to him. It’s important,” I said. The phone clanked on the desk as the student interrupted the class, and I heard my husband say, “Who?” After a few beats, he picked up the phone and said, “Are you serious?” When I said yes, he announced to the choir, “I’m going to be a dad!” The room erupted with cheers of congratulations, and I felt a wave of joy and warmth wash over me.
After calling my parents and closest friends, I hurried back to work as a middle school band director. My school family was overjoyed, and I was greeted with bouquets of flowers from my husband and family. I may not remember the notes my students played that day, but I do remember their excitement. It was a day filled with love and support.
Plans and the new reality that remade them
I had a plan for my child. I knew he would carry the name of my maternal grandfather, Julian (Julianne if the baby was a girl). He would play soccer and baseball (or softball, like Mom) and be in the band or choir. Straight As and the honor roll would be second nature, like it was for me and Joe.
Julian arrived on June 23, 1996, and the dreams I had for him were on their way to becoming a reality. But two days later, I learned I had become a mother to a child with hemophilia.
The excitement gave way to a complex mix of emotions, including fear, guilt, shame, anger, and despair, all rolled into one massive ball. What would become of the dreams I had for Julian? What did hemophilia mean?
It took months of talking to parents in the bleeding disorders community and with medical professionals to realize hemophilia was not a death sentence. Joe and I learned there would still be opportunities and adventures for Julian. We would not let hemophilia keep him from chasing his dreams.
The years were not easy, but we learned how to handle emergency rooms, clinic appointments, and nurses coming to our home to administer infusions. Julian developed an inhibitor after his first birthday. This prompted a port placement, and Joe and I had to learn how to access it. For almost three years, we accessed Julian’s port every day to fight the inhibitor, and eventually, we eradicated it.
Joe and I handled one bleed and one infusion at a time. But one constant kept us going: love.
I know how it feels to be the parent of a child diagnosed with hemophilia. Every emotion is legitimate. It took time to realize that I needed to enjoy being a new mother, despite my baby having hemophilia. If I focused only on Julian’s disease, I would miss out on the milestones he reached. Watching him turn on his tummy and sit up on his own were moments I am grateful I didn’t miss.
My dreams for Julian have changed, and hemophilia played a part in that. Each painful bruise and infusion brought challenges, pain, and sometimes fear. Hemophilia demanded so much from Julian. Yet, he never let his disorder be an excuse for not following his dreams.
When I think back to Julian in his little tie-dyed onesie, taking his first steps, one wobbly, chubby leg at a time, sheer joy overwhelms me, even decades later. How could I realize then that hemophilia would strengthen my son and enhance his determination? Where I thought a bleeding disorder would be a detriment, Julian made his life into one that challenges and thrills him. He embodies what it means to rise above adversity. He is a remarkable man who is not defined by hemophilia. It is just a part of his story.
Being a witness to his journey fills this mother’s heart with gratitude and awe.
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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