My son is riding the roller coaster of hemophilia with his arms in the air
Caeleb’s journey has been full of sharp turns and steep drops, but he is thriving
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Growing up in Houston, I remember the now-defunct amusement park AstroWorld being a significant part of summer for many people. Its star attraction was the Texas Cyclone, a nearly 100-foot-tall wooden roller coaster whose steep drops and quick turns could make your stomach do somersaults. If you sat in the middle or back, you couldn’t see what was coming, so every second was a surprise.
I rode it one time. Once was enough. When the ride finally slowed down, I felt relieved. My hair was messy, my heart was pounding, and my legs were shaky, but I was happy to be back safely.
Worried what might happen next
Raising two sons with hemophilia often felt like being on the Texas Cyclone. I wasn’t scared all the time, but I was always worried about what might happen next. I wanted to shield my sons from every fall, but over time, I realized I couldn’t control everything.
Their early years were filled with fear and worry. While unexpected bleeds didn’t happen often with my oldest son, Julian, my youngest son faced tough challenges because his high-titer inhibitor made treating bleeds much more difficult. While most people might recover from a bleed in a few days, it could take Caeleb weeks. He spent a lot of time in the hospital for pain management, and in second grade, he missed more than 50 days of school. Repeated bleeds in his right knee and ankle led to lasting mobility issues that he still manages today, at age 20.
Screaming with delight, arms in the air
But one memory stands out to me. Caeleb really wanted to ride the bus to school, but I usually drove him because of his health. Finally, I gave in, and on the day the bus stopped in front of our house, I walked Caeleb outside. When the door opened, he reached for the rail and then struggled with his bad knee to climb the steps. I wanted to rush over and help him, but I watched as he pushed through, climbed the steps, sat down, and waved goodbye.
In that moment, I saw how strong and brave he was, how he refused to let hemophilia stop him. And I have continued to watch Caeleb figure out how to make his way in the world.
Today, he is a junior in college. When we moved him into his dorm, his excitement was easy to see. While he and his dad went to get things from the car, I looked around his room. There was a manual wheelchair, an electric wheelchair, and a cane in the corner, and I was happy to see them because they help Caeleb do things he might otherwise have difficulty doing.
Caeleb’s journey has been full of sharp turns and steep drops, just like a roller coaster, and the constant challenges he faced often surprised me. But in the end, I found something amazing: My son isn’t just surviving — he’s thriving. He’s riding with his hands up, screaming with delight, facing both the calm and the chaos with strength and grace.
I have never been prouder to be his mom.
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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