What the years of raising sons with hemophilia have taught me
Time does fly by, but it carries with it valuable lessons for living and loving
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I use Spotify to listen to my favorite podcasts, audiobooks, and music. Downloading what I like is simple, but there’s another fun part: the app makes playlists based on what you listen to. One recent playlist really surprised me.
The playlist Spotify picked for me was called Oldies Mix. I thought it would have Motown and the Beach Boys, but to my shock, it included Journey, Foreigner, Air Supply, 38 Special, and Janet Jackson. Really? Janet Jackson?
Then I saw an invitation for my 40th high school reunion posted on social media.
Time really does fly, and suddenly your favorite music is considered classic. Life starts to center around doctor’s appointments, aches and pains, and thoughts of retirement. When I see young parents with babies, I remember when my own kids were that little.
Looking back on a life with hemophilia
My oldest son, Julian, just turned 30. Seeing him chase his dreams and succeed is incredibly rewarding. But when I think back to when Julian was a newborn, it wasn’t a joyful time. I felt a lot of fear and deep sadness then.
Julian has severe hemophilia A. He hasn’t had any joint bleeds, but he went through almost three years of daily infusions into a port to eradicate an inhibitor. I was so proud of him, sitting at the kitchen table with a toy while his dad or I gave him his medicine. After his port was removed, he developed a fear of needles. That was the hardest part of his experience with hemophilia.
As a new mom raising a child with hemophilia, I was often afraid. I worried that my son might have a serious bleed that would hurt him or cause lasting problems. I didn’t want him to suffer, but I couldn’t control everything. I just wanted to be there for him and know how to help.
Over time, I realized living in fear of what might happen would steal my happiness. As the years passed, I wanted to share my experiences with other moms so they would not live in constant fear. I reached out to the bleeding disorder community to help others and offer support. It is one of the things that brings me great joy.
Hemophilia has helped me become a more compassionate person. Over time, I have realized that everyone has a story, often shaped by challenges they cannot control. The birth of my second son, Caeleb, who also has hemophilia, took me down a different path. It was filled with complications and trauma. And I learned from every moment. Raising my sons with hemophilia has touched every part of my work as a hospice chaplain. The experiences I have had in hospitals, facing uncertainty, and learning to be resilient have shown me that compassion is more than just kindness. It means being there with someone in their pain. Sometimes, the best thing we can do is walk with someone and let them know they are not alone in what they are facing.
Now, when Spotify labels the soundtrack of my youth as an “oldies mix,” I have to laugh. The years have gone by faster than I ever imagined. My sons are grown, my hair has a few more gray strands, and life looks very different than it did when I was a frightened young mother sitting beside a child with hemophilia.
But getting older has its rewards. I’ve learned that fear doesn’t have the last say. My experiences have shown me that hard times can make us more compassionate and help us connect with others in real ways. Looking back, I wouldn’t have chosen the tough path our family walked, but I’m thankful for what I learned from it.
Maybe that’s one of the good things about getting older. You start to realize that even as time changes, the lessons you learn from love, struggle, and hope never fade.
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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