My sons navigated hemophilia like two young boys learning to swim
For me, it was an ocean I had to learn to cross
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The swimming pool was the best place to be for a young girl growing up in the hot Texas summers. I’d hand over my crumpled dollar at the counter and spend the whole day there. After a quick shower, I’d grab my face mask, towel, and snack bar money, then hurry to grab a lounger or a spot on the grass.
I wasn’t the best swimmer. I could go underwater, float on my back, and do a pretty good dog paddle. Still, being in the water felt freeing. Its weightlessness made me feel light and strong at the same time.
Swimming now reminds me of what it’s like raising children with hemophilia.
Swimming in a pool
I used to think my sons‘ bleeding disorder affected them the same way it affected me and that their experiences matched mine. But now I realize they were actually quite different.
Julian, 29, was diagnosed with severe hemophilia A after his circumcision. Caeleb, 20, was diagnosed right after he was born, and a high-titer inhibitor made his path more difficult. Hemophilia was part of their lives every day from the very beginning. Needles, infusions, and missing out on outings because of a bleed became as normal as brushing their teeth. They never knew life without hemophilia. It was always there. It was the water my sons swam in and all they had known.
The few days before each boy’s diagnosis were full of joy, mixed with the usual nerves about bringing a newborn home. But everything changed once I heard the word hemophilia.
Over time, I got used to all the new terms associated with their disease, but I worried constantly: Would my sons be safe at school? Was the playground too risky? Could they go to sleepovers? I spent many sleepless nights even as my sons were growing used to their world. I tried to help them enjoy the things kids do — video games, friends, music, art, and dreaming about the future. They lived like other kids, just with occasional breaks for infusions. My husband and I did our best to make sure hemophilia didn’t take over their lives.
Caeleb’s struggle with an inhibitor took a lot of our focus, and for years, hemophilia was at the center of our family life. I carried a lot of stress and emotional weight during that time. Looking back, though, I see that Caeleb was still a kid. He might not have run around with his friends, but his wheelchair let him play, learn, and enjoy the moment.
Meanwhile, I was always bracing for the next big storm.
Over time, I learned that my sons were stronger than I imagined. They developed resilience because there was no choice. They learned how to identify the start of a bleed and determine how to take care of themselves. Hemophilia never defined them. The waters of hemophilia taught my sons to adapt and take steps toward fulfilling their dreams, and shaped them into amazing men.
Now they are adults, moving through life with confidence and wisdom that comes from experiences most people never have. Looking back, I see that all those years I spent worrying about what might overwhelm them were not needed. If I had looked closer, I would have seen they were learning to swim all along.
My sons are still swimming in the waters of hemophilia. For me, it was an ocean I had to learn to cross. In the end, I discovered that the very children I wanted so much to protect had become the strongest swimmers.
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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