Weighing Whether to Bring a Wheelchair on Our Next Vacation

Cazandra Campos-MacDonald avatar

by Cazandra Campos-MacDonald |

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I enjoy family vacations. While we don’t necessarily take yearly trips, we cherish our adventures. My husband and I want to take a trip to Washington D.C. with our son, Caeleb, 16, who is a history buff. We have put the trip on hold because of the COVID-19 pandemic, but we also remain concerned about how Caeleb will get around, and whether he should use a wheelchair.

Seeing Washington D.C. will mean a lot of walking, and Caeleb suffers from chronic pain as a result of years of recurrent joint bleeds that damaged his knee and ankle. I know he will want to see every museum and sight possible, given his love for history, and trying to get him to slow down wouldn’t be easy. That’s why I suggested that he consider using a wheelchair. But even the thought of one brings back painful memories for the entire family.

Caeleb endured daily physical pain while using a wheelchair daily for more than a year when he was younger. He’d attempt to scoot or hop on his strong leg to reduce his dependence on the wheelchair, which was a heavy reminder of what he couldn’t do. The ultimate measure of success for Caeleb was walking on his own feet. Leaving the wheelchair behind was his goal.

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I know I should encourage Caeleb to use a wheelchair when necessary, but I feel like I would be admitting defeat, even though I know that’s not true.

Caeleb was 7 the last time he used a wheelchair, and I remember that day well.

Our family had gone away for a ski trip. Snow and ice covered the resort, and I kept my eyes on Caeleb. He would walk for a bit, then go back in the wheelchair. It was nerve-wracking to watch him hop in and out of it while negotiating his way around the ice.

One night, he stood up on a slightly icy walkway and kept walking. He fought for every shaky step and flashed a toothless grin, proud of his accomplishment. I knew then that my son was on the mend, and better days were ahead.

Caeleb’s wheelchair was an essential part of his life. He even attended an adaptive wheelchair camp in the summer, and I appreciated that the chair allowed our family to remain active. It went with us everywhere and we adapted to it.

Caeleb knows mobility can be an issue on a long trip. Now that his dad and I have expressed our concerns about his stamina, I hope he will think ahead and realize he needs to be prepared to cover long distances. Preparing and thinking ahead are part of Mom’s boot camp, because a young person must take them in becoming an adult.

If Caeleb wants to postpone the D.C. trip, I will happily agree. I want him to feel excited and confident that he will be able to manage it. But if he agrees to use a wheelchair when necessary to get around the National Mall and see all the exhibits at the Smithsonian, then we’ll get its brakes checked, and off we’ll go!

Using a mobility aid isn’t a sign of weakness. I will encourage my son to utilize any tools necessary for him to experience the world. Whether he’s walking or wheeling, I will be by Caeleb’s side as he moves toward adulthood.

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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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