My disabled son understands the situation far more than his father does

I picked my youngest son, Caeleb, up from the University of New Mexico in Albuquerque last week, and we started unpacking the car the minute we arrived home, his bike, electric wheelchair, walking stick, and everything else forming a pile in the garage.

“Look, Dad,” he said. “This stuff is for your disabled son.”

I pretended not to hear him, but I felt like telling him to never define himself as disabled. Many things define my son, and having a disability may be a part of his story, but it certainly is not the whole story, I thought.

But I kept my mouth shut, and wondered why he identified as disabled, surprised by my own strong reaction. “I should correct him when making such a narrow description of himself,” I thought.

As I reflected on the moment, I realized that Caeleb didn’t have a problem. I did.

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Accepting a new normal

When Caeleb, 20, was a child, he developed complications related to hemophilia. He had internal joint bleeds, a fear of needles, and frequent hospitalizations. He’d come home for a few days, experience a spontaneous bleeding event, and return to the hospital. For much of three years, my poor boy was in a room on the sixth floor of the University of New Mexico Hospital. My fear of losing him was a significant part of my caregiver journey and shaped how I respond now to his health challenges.

Through those difficult times, my wife and I developed a routine to manage the needs of our oldest son, Julian, while swapping nights in the hospital to support Caeleb. And then the cycle ended, and for a while, life returned to its usual routine. We embraced that hint of normalcy as a new treatment plan proved successful in preventing spontaneous bleeding episodes.

Our joy lasted about four years. Caeleb didn’t have another internal joint bleed, but the bleeding episodes damaged his right knee and ankle, and MRIs revealed he had little to no cartilage in his target joints. He would often need our help to walk.

As a caregiver, I cannot begin to describe how it felt seeing my boy depend on equipment to help him navigate the world. It was a moment of deep vulnerability that stirred feelings of sadness and helplessness, even though I knew I’d done nothing wrong. I learned that many parents in the bleeding disorders community beat themselves up over complications. We blame ourselves for our children’s limitations.

An insight into my response

A small part of me held on to the hope that Caeleb would recover 100% of his mobility, and we would be left with nothing more than memories of a bad time. I hoped there would be no more wheelchairs or anything else to help him get around.

But I quickly realized that Caeleb’s new normal would include these aids. He needed extra help, whether I liked it or not. I had to give in and acknowledge his struggles. When he called himself disabled, he understood the situation far more than I did.

Caeleb still has big dreams and goals and continues to work toward his plans. The only difference is that he often uses a wheelchair or a bike to get around. He accepts his limitations and looks beyond himself to find resources to lead him to success. I look at him with fascination and awe. I am so privileged to raise this amazing son of mine.

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.