What my sons wish people understood about hemophilia, part 2
Caeleb, 20, notes that some with hemophilia are ambulatory wheelchair users
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Last in a series. Read part one.
Last week, I asked my oldest son, Julian, what he wished people outside the bleeding disorders community understood about hemophilia. He wished they would not treat him as though he lived in a protective bubble. He wanted independence and trust in his ability to care for himself. Isolating him from the world took away his power without his permission, highlighting the need for others’ trust and understanding.
I visited my youngest son, Caeleb, in Albuquerque, New Mexico, this week and asked him the same question over dinner. I expected a different response, but not one that would move me so deeply. He said, “I wish people outside the bleeding disorders community understood that some people with complications related to hemophilia are ambulatory wheelchair users. Sometimes we can walk with little or no assistance; at other times, we depend on canes or wheelchairs.”
Remembering unpleasant events
His words reminded me of an awful incident at the airport many years ago. After I let Caeleb, who was 8 at the time, walk through the security scanner instead of staying in his wheelchair, a security agent accused us of using the wheelchair to get a good seat on the plane. I kept moving to defuse the situation, even though I was seething, but Caeleb has carried that hurt with him, showing how such moments deeply affect those with hemophilia.
“People like that agent don’t understand bleeding disorders, or he wouldn’t have said anything,” Caeleb said. Repeated bleeding episodes left little to no cartilage in Caeleb’s right knee and ankle.
“You could walk through the scanner, but there was no way you could make it to the gate,” I said.
The airport was not an isolated experience. At school, Caeleb often felt like the odd man out when friends treated him differently for using a wheelchair. Some accused him of faking because he had walked just days earlier.
“Why would I lie about hurting so much? I wanted to be on the basketball court with my friends. Instead, I could only watch from the sidelines,” he said.
Reconnecting with my amazing son
I thanked him for his honesty. “I can’t imagine how difficult that was, son. I wish I could have helped more,” I said.
“You did everything you could to help me have a good life,” Caeleb said.
His reassurance meant more to me than he knew. I hugged him and said, “If I could take away your pain, I would do it in a heartbeat. I can’t, but I can stand by you and help however I can.”
Helplessness has followed me throughout Caeleb’s journey. I constantly ask myself, “How could I have helped him more?” Watching him struggle mentally and physically has been one of the hardest things in my life. Hemophilia often felt like a tsunami, sweeping away activities and leaving only pain and mental struggles that affected us all, but our love and resilience kept us going.
Reclaiming joy and gratitude
Even when hemophilia stole his joy, we made room for laughter. At his bedside, I sometimes launched into a Spartan cheer like the ones Will Ferrell did on “Saturday Night Live” to lift his spirits. During terrible bleeding episodes, I shifted between protecting him and encouraging him to find small moments of relief wherever possible.
That blend of honesty and humor carried us through dinner. When the conversation grew too deep, we ordered milkshakes to restore our sanity. “I hope I didn’t ruin dinner by bringing this up,” I said.
“I just answered your question. I bet you didn’t know how deep it would get,” Caeleb said.
I smiled. “No kidding.”
Over milkshakes, the weight began to lift. We laughed because we had survived the hard moments together. Caeleb reminded me that understanding hemophilia means looking beyond appearances. Someone who walks today may need a wheelchair tomorrow, and both realities are valid. Trust, compassion, and listening are essential, and this lesson helps others see the importance of support and understanding.
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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