In our family, memories of tough hemophilia days don’t always align
My son remembers his brother's hospitalizations differently than I do
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At work, I’m the second-oldest on my team. With our ages ranging from mid-20s to early 50s, we each bring different life experiences. I’m always interested in hearing the Gen Z and millennial women share their stories.
As a Gen X person, I sometimes do things that remind me of my parents and often catch myself saying, “I remember when …” I like talking about old gas prices, fashion trends, and childhood memories. I also enjoy seeing social media posts with pictures from decades ago that ask, “Remember this?” Those memories make me happy.
But when I look back on raising sons with hemophilia, my memories don’t always match those of my family.
Different perspectives
My oldest son, Julian, 29, is a great brother to Caeleb, who is 20. When they were younger, though, the nearly 10-year age gap was tough. Julian didn’t really connect with Caeleb. After all, a high school senior doesn’t have much in common with a fourth grader.
Caeleb faced a lot throughout his toddler and elementary years: an inhibitor, many port surgeries, joint damage, long hospital stays, and even an allergy to factor VIII. Julian often came along to appointments and hospital visits when his brother was having a hard time.
During one hospital stay, Caeleb fought the nurses as they tried to put in an IV. I was by his side, trying to help. Watching my son struggle, scream, and cry was overwhelming. When he was that scared, it felt like he was somewhere I couldn’t reach. The nurses told me I had to leave the room.
When I walked out, Julian, then about 13, was leaning on the doorframe. I remember him standing there quietly, arms crossed and tears running down his face, showing compassion for his brother. Even though their age gap kept them from fully connecting, that moment showed me how much he loved his brother.
The funny thing is, when I mentioned that moment to Julian as an adult, he strongly denied that it ever happened. It wasn’t the first time our memories didn’t match. When I tried to convince him, he just walked away. His reaction surprised me.
Memory is personal and shaped by our emotions, perspectives, and even how our brains work. The same situation can provoke different feelings in different people. As a mom standing by my son while he screamed in fear, I felt anxious, scared, and sad. Julian experienced it as the big brother. Maybe it was the first time he really understood Caeleb’s struggles and realized his mom couldn’t fix them.
Whether or not my memory of that day is accurate, I’ve since learned that Julian’s deep love for his brother has always been there. That is far more important than arguing about the details or determining who’s “right.”
While there are times in my life I wouldn’t want to experience again, it amazes me to reflect on moments that once seemed impossible to overcome. It’s easy to forget the hard parts, but revisiting them helps me appreciate the journey.
Now, whenever I find myself saying, “I remember when” around my younger co-workers, it reminds me of something important: Everyone remembers things a little differently, but the exact details aren’t what matters most. What really counts are the love, hope, and relationships we share.
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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