A reminder about preparing my son with hemophilia for life on his own
As parents and caregivers, we do our best to educate our children
Raising two sons with a bleeding disorder has given me hundreds of stories. Many of them lead to happiness and gratitude. Others are filled with pain and suffering. They are all a part of me in a way I never imagined they would be.
The nice thing about having so many stories is they show the experience I have. Many of my stories about hemophilia are painful, but they also have been helpful. A phone call from a hemo mom who reached out to me after I spoke at a recent event reminded me about the power of my stories.
Her young adult son with a bleeding disorder had recently left home. As I heard this mom’s pain, my heart broke all over again as I remembered the day I hugged my own son, Julian, goodbye. Many nights, I’d cry myself to sleep in fear that he wouldn’t take his bleeding disorder seriously. Would the lessons I taught along the way stick with him? I worried about his infusion schedule. Would he order his factor? Would he infuse when he had a bleed?
Was my son prepared for life on his own?
I always did my best not to interrogate Julian. I wanted him to trust me, yet my worries were overwhelming. After the first year of college, Julian admitted he didn’t infuse as often as he needed to. He told me about some considerable bleeds he’d endured. I had no idea.
Years later, he confessed that it took him moving out and going to college to understand the significance of his disease. I was stunned at his confession. Even after years of educating him about his bleeding disorder, he still hadn’t understood the severity of his condition. He thought he could leave hemophilia behind.
As parents and caregivers, we do our best to educate our children. From an early age, children with bleeding disorders must learn about things others cannot imagine. Parents must teach their children with bleeding disorders how to infuse and treat bleeds, about insurance and emergency rooms. There is so much to teach. Did I do everything right when raising my sons with hemophilia? What is “doing everything right?”
I am sure I could have done things differently, but I know now that Julian picked up the necessary lessons. I’m grateful to have encouraged and insisted that he manage his bleeding disorder before moving away.
I think ultimately there is no right way to teach our children with bleeding disorders about their condition. We do the best we can and help them along the way. Letting go and seeing my adult son thrive makes the tears, worry, and sleepless nights seem like a distant memory.
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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