A new motorized wheelchair makes my son’s hemophilia more visible
The chair offers him greater independence at college, but I still worry
My son Caeleb recently started college. He’s enjoyed the beginning of school and appreciates the flexibility of his schedule, but there’s one problem: his mobility.
Caeleb lives with severe hemophilia A with an inhibitor. Persistent bleeding into his right knee and ankle resulted in irreparable damage and significant joint pain. After looking at an MRI scan of Caeleb’s knee and ankle, one doctor stated that the images looked similar to that of a patient in a veterans hospital. That comment confirmed to me that my son’s pain was indeed significant.
Caeleb can walk, but long distances are difficult. Since his elementary years, he’s used a cane, walker, and wheelchair to maneuver around the world. Seeing my son use a mobility device is a difficult reminder of all the hospitals, infusions, bleeds, and pain he endured. Those years were challenging for our family.
To help Caeleb get between classes on campus, we decided to invest in a motorized wheelchair. When the chair arrived, Caeleb was excited. Of course, the novelty of such a device can be fun in the beginning, but I do have my concerns.
A mother’s fears
For years, Caeleb’s hemophilia was invisible to the outside world. When he wasn’t using a mobility aid, his battles with bleeds, pain, and hospitals were largely hidden behind his brave face and quiet perseverance.
But now, with a motorized wheelchair, that invisibility is gone. Once tucked away and private, his hemophilia is on display for everyone to see. While Caeleb finds new freedom in his ability to move around campus, I can’t help but worry that the chair will invite questions, stares, and judgment.
Will people see him for who he is, or will they define him by the chair? Will they question the validity of his condition because he doesn’t always look like he needs a wheelchair? These concerns weigh heavily on my heart. After years of navigating an invisible illness, this new visibility feels like an invitation for scrutiny rather than understanding.
Yet I also know that the chair is a gift. It grants Caeleb the independence he deserves after so many years of struggle. Perhaps, in time, we’ll find a balance where his hemophilia can be seen without overshadowing who he is. For now, I try to hold on to that hope, even as I grapple with fear in this new chapter of our lives.
I hope that when people see someone in a wheelchair, they pause to recognize the resilience it takes to navigate a world that isn’t always accessible or kind. Instead of rushing to conclusions or making assumptions, I hope they choose to see the courage behind every movement — the silent strength that pushes someone through pain, frustration, and judgment.
Every wheelchair user carries a story of perseverance, and they deserve to be met with empathy, not scrutiny. We may never fully understand the battles they fight, but we can choose to honor their journey by offering kindness and respect.
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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