Stuck in limbo with both accessible vans out of commission
An accident and a malfunction render plans A and B useless

I live in rural Nebraska with my husband and our seven children. Three of them — Max, 19; Rowen, 15; and Charlie, 14 — live with Duchenne muscular dystrophy (DMD).
People who meet me in person for the first time when I’m with my family are often curious to know what kind of vehicle we drive. Honestly, if I weren’t living the life of a Duchenne caregiver and mom and met a family with three sons who were wheelchair users, along with a slew of other children, I’d be curious, too. So I don’t mind the question, and I always willingly reply.
The answer is that we have two huge vans. The one we use most is a white Ram ProMaster. It’s 9 feet tall, and we lovingly call it “The Beast,” a play on “Beauty and the Beast.” My name is Betty, and “Betty and the Beast” made sense to us.
The other one is a low-profile, 12-passenger, blue Ford Transit. It’s not our favorite van for transporting our sons because it’s a tight fit for them, but it was the first of the two vans we purchased.
We bought it in 2015, when the boys started using mobility scooters. We would physically lift each boy into the van’s side entrance, and they’d walk to their seats and buckle up. Jason or I would pick up the scooters and put them in the cargo area at the back of the van. Eventually, we bought and installed a ramp, and the boys could drive in themselves.
As Max, Rowen, and Charlie transitioned into power wheelchairs, we acquired The Beast. It’s not pretty, but it’s been a good van for us, almost always succeeding in getting us from point A to point B. We kept the blue Ford, knowing there might be times when we needed a backup or the boys would need to go in different directions. We realized that just because they’re three brothers with the same disease doesn’t mean they’ll always be together, doing the same things.
From bad to worse
The vans have worked well for us for years. However, last August, The Beast blew its transmission. We went without it for two months. We were beyond thankful we had a backup. Then, when we got The Beast back with a new transmission, the ramp stopped working and we had to return it to the shop. Again, we were thankful for a backup.
Over Christmas break, though, The Beast completely shut down on us while we were returning home from a basketball game. I’m not a car person, so please excuse my explanation, but there were leaks, which created more leaks and more problems. It’s been in the shop for two weeks and counting. But that was OK, because we had our backup.
However, that’s no longer a consolation. A few days ago, Jason and Rowen were coming home in the blue van and got into a car accident. They have some bumps and bruises, but they’re both OK. The van, however, is totaled.
As of this writing, we have no accessible vehicle. We’re praying, hoping, crossing our fingers, and sending every positive vibe out that The Beast will be fixed soon. On the same note, we hope the insurance works quickly so we can replace our backup van.
Not having an accessible vehicle is a difficult situation for us. We’ve borrowed a minivan and are using a portable ramp to load the wheelchairs, but Jason has to physically lift the boys out of their wheelchairs and put them into a van seat. It’s not ideal, but for a few days, we can deal with just about anything.
We’ve never struggled with transporting our sons until now. It reminds me of a time when our sons had just been diagnosed with DMD. A doctor told us to hope for the best and prepare for the worst.
I thought we were prepared by having two vans. However, I’m learning that being prepared for what might happen next isn’t always possible.
We’ve also learned to be flexible, roll with the punches, and trust that we’ll figure it out. That’s where we are right now: slightly stranded without a van but confident that we’ll figure out how to get through this, even if it entails simply practicing patience while we wait!
Note: Muscular Dystrophy 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 Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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