What hummingbirds can teach us about ambulatory wheelchair users
My son with hemophilia isn't defined by his occasional need for rest
I love to watch hummingbirds. They’re lightning-fast as they move from flower to flower, feasting on nectar and insects. When they come to the feeder outside my window, their chirps and hums are different from those of other birds. I’m intrigued that the hummingbirds go into a state of torpor, a sort of hibernation that gives them a chance to rest. They need this time to save energy and prepare for the day ahead.
Watching birds reminds me of what it means to be an ambulatory wheelchair user.
My youngest son, Caeleb, is a freshman in college living with severe hemophilia A with an inhibitor. As a result, he’s had significant joint damage to his right knee and ankle, which often causes intense chronic pain. Caeleb sometimes uses a cane to get around, but on tough days when his pain is exceptionally high, he uses a wheelchair.
Winter is especially hard for Caeleb, as the cold intensifies his pain. He’ll try to mask how much he’s hurting, hoping no one notices. He wants nothing more than to walk without pain, but unfortunately, pain is part of his daily life.
I realized something about Caeleb while with him on a recent outing.
A better understanding
It was a cold, windy day, and Caeleb, his dad, and I were preparing to go to a Brick Convention — a Lego fan event — for Caeleb’s birthday. I told him we’d have to do a lot of walking and suggested he wear good shoes and bring his wheelchair. He immediately refused the latter. I tried again to encourage him to take it, but he wouldn’t budge.
When we arrived at the convention, a long line stretched around the building as Lego enthusiasts waited for the doors to open. It was cold! I stayed at the front in the corner, hoping to get away from the wind. Caeleb and his dad walked to the end of the line and waited.
Watching them from a distance, I noticed Caeleb’s limp was more pronounced. My heart ached as I wondered why he hadn’t brought his wheelchair. Caeleb has endured enough pain for a lifetime in his 19 years; why did he refuse to use his chair? Then I realized I’d forgotten something as I saw him walking toward me, laughing with his dad.
He wants to fit in.
For years, Caeleb has relied on his wheelchair and cane to help him move through life. Even in elementary school, he used a wheelchair. The whispers, stares, and cruel comments from strangers left their mark. Caeleb knows that using a wheelchair could spare him some pain, but I believe my son doesn’t want it to define him.
Hummingbirds offer an example to help understand people like Caeleb, who are classified as ambulatory wheelchair users. While these birds soar through the air gracefully and quickly, they must also stop and rest.
Whether Caeleb is using a cane, a wheelchair, or simply walking on his own, it’s all a part of his journey — and a testament to his resilience and strength.
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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