My son’s wheelchair didn’t limit him; it let him keep living fully
A joint bleed when he was 8 left Caeleb unable to straighten his leg for a time
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For years, I saw wheelchairs and other mobility devices as symbols of limitation — signs of everything a person could no longer do. Then my youngest son, Caeleb, needed a wheelchair due to complications of hemophilia, and I began to see it through his eyes. What I feared would restrict his life became the tool that gave him freedom — to move, to stay connected with his friends, and to keep living fully.
When Caeleb was 8, he experienced the worst internal joint bleed of his life. Standing at the foot of his hospital bed, I felt like a failure, unable to relieve his pain. The bleeding was in his right knee, and despite his medical team’s efforts, no treatment brought immediate relief. My wife, Cazandra, and I did not know what to do, and I saw my own fear reflected in her face.
As I stood there, searching for a way to help, I noticed that Caeleb’s right leg had begun to bend at the knee. At first, I assumed he was holding it that way to ease the pain. I soon learned that the bleed was preventing him from straightening it. Even then, I believed the problem was temporary and that he would regain full movement once the bleeding stopped.
Learning to live with a wheelchair
The wheelchair initially seemed like a temporary part of hospital life. But days became weeks, and Caeleb still could not straighten his knee. We used the chair to leave his room and visit the playroom, and I was grateful for the small measure of freedom it gave him. But I had not yet considered what relying on it might mean for our life beyond the hospital.
When the bleeding finally stopped, I expected the clotting medication to restore Caeleb’s mobility. I assumed the wheelchair would remain at the hospital, and that they would not discharge him until he could walk without it or another mobility device. I soon learned otherwise.
Doctors and specialists continued to visit, but one fact did not change: Caeleb still could not straighten his leg. Physical therapists joined his care team, but his mobility did not improve. What if he never walked again? We arranged ongoing physical therapy at the University of New Mexico Carrie Tingley Hospital in Albuquerque. Then a nurse handed us his discharge papers, and we left the hospital — wheelchair and all.
The morning after we returned home, I noticed the wheelchair in the corner. In my fear, its chrome frame seemed almost to grin at me. I imagined other children singling him out or harassing him because he used it. My emotions swung between fear and sorrow, and I treated the chair like a monster that had defeated us. To me, it announced that my son would now be visibly different.
Opening up his world
Caeleb adapted to the wheelchair more easily than I did. He enjoyed moving himself around school and cared less about how he reached his friends than about being with them. One afternoon, when I arrived to pick him up, I nearly missed him in the crowd gathered around his wheelchair. No one cared about the wheelchair. They were glad to have their friend back — my incredible son.
I began to see the wheelchair differently that afternoon. I folded it, lifted it into the vehicle, and secured Caeleb in his seat. I still did not like what the chair represented to me, but I could appreciate what it gave him. It offered independence, opened his world, and helped him remain socially connected. His life looked different from what I had imagined, yet the wheelchair gave him meaningful control over his surroundings.
Eventually, Caeleb, now 20, was able to straighten his leg and walk again.
Recently, I asked him what he remembered about his days in a wheelchair. “I was so glad I had something that helped me get around at school,” he told me. “Don’t get me wrong — I was happy when I could straighten my leg and walk again. But the wheelchair let me be with my friends, laughing and joking with people my own age. We made it work, wheels and all.”
I hugged him and told him I loved him more than he could know. As his father and advocate, I had to admit his journey hadn’t unfolded as I had planned. Yet it taught me lessons I could not have learned by following the path I had imagined. I have grown to be more grateful for the people I love, for the medical teams that work tirelessly to develop effective treatment plans, and even for the devices I once feared.
Caeleb taught me that his wheelchair was never his enemy. What I once saw as a symbol of limitation became the very thing that gave my son the freedom to keep living fully.
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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