Children have helped me view my accessible van positively
Despite my concerns, my community has responded enthusiastically
As my Friedreich’s ataxia (FA) symptoms have progressed, my abilities have deteriorated, forcing me to adapt. My progression has been fairly steady and predictable, all things considered. Except for temporary circumstances like injury or illness, I usually know what the next morning will bring, physically.
When it became clear that my mode of transportation was no longer safe or smart, I knew something had to change. After parking, I’d been holding on to the sides of my Chevrolet Tahoe, holding my breath and crossing my fingers that I’d be able to walk safely and independently from the driver’s seat to my liftgate, then heaving out my 35-pound rollator and walking to my destination.
Over the summer, I acquired a Chrysler Pacifica that BraunAbility outfitted to accommodate my newly necessary wheelchair. While there was a definite learning curve to navigating the van, such as finding parking spots with ample ramp space on the proper side of my car and reversing down the van’s ramp, I have felt so encouraged and supported. I attribute the majority of these positive feelings to my surroundings, specifically the children I encounter daily.
The excitement is still growing
My husband and I have an 11-year-old son, Brooks, and an 8-year-old daughter, Collins, so I’m almost always around elementary-age kids. Any self-conscious feelings, discouraging thoughts, or frustrations I feel about needing an accessible van are quickly eased when I hear exclamations, envy, curiosity, or appreciation from passing children when I deploy my ramp at school, church, sports complexes, or parks.
Although I’ve only had the van for a couple of months, the excitement is still growing. My kids love to have their friends come check it out, and we’ve enjoyed quite a few parking lot dance parties, rides to grab ice cream, carpool requests, and product demonstrations. I don’t think of myself as needing constant validation, but the enthusiasm around my van puts the biggest smile on my face.
While I will always loathe what FA does to my body, I am so incredibly blessed to live the life that I do. I love that I get to demonstrate resilience and joy despite my circumstances. I don’t take lightly the responsibility of advocating for disabled people — especially among the next generation — and I’m always trying to learn, adapt, and do it better every day.
FA has taught me so much, and the biggest lesson from the van is this: Even if you thought something would be big, awful, and hard, with the right mindset, it can be a joyfully enriching experience.
I really thought this vehicle would have a negative impact on my life. I thought that kids would be scared of the wheelchair lady in the weird van, or that parents would shy away from me once I was forced to take yet another step away from “normal” to accommodate my disability. Fortunately, that couldn’t be further from my reality. Actually, I’ve heard dozens of kids beg their parents to “get a van like Mrs. Kendall’s!”
“Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is — his good, pleasing and perfect will.” — Romans 12:2
Note: Friedreich’s Ataxia News 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 Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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