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Adults with SMA: Brent Dixon
Brent Dixon is a husband and a father of two with SMA Type II. He and his family recently moved to Valdosta, Georgia, and he’s currently looking for work and trying to hire caregivers. SMA News Today caught up with Dixon to talk about his family life, and how he manages his day-to-day challenges.
Kevin Schaefer: To start off, what does your daily life look like? Between family life, arranging nursing assistance and working, what does a typical day of the week look like for you?
Brent Dixon: Well, right now my life is crazy as we just moved from Texas to Georgia. That was a 1,000 mile road trip that took three days, and we stayed in three different hotels. That was a lot of work for my wife Brittany, but thankfully we had my brother Justin and friend Duane helping us. They drove the U-Haul and helped with me, which freed up Brittany to help the kids every time we stopped.
I also underestimated how long government programs take. I’m seriously still waiting to get caregiving services, and we have lived here for two months now. We are still settling in our new home. Everything is all on Brittany as far as getting me up and ready everyday, taking care of our two kids, etc. We also have a Boiled Peanut stand we run three days a week, which I help with. My wife is truly amazing and I’m so blessed to be married to her!
KS: As a husband and father who has SMA, what things do you and your wife do to make sure that your physical needs are met, and to manage your family life? What is that balance like?
BD: Being a husband and a father with SMA can be challenging, but who doesn’t love a daily challenge! My wife and I have two kids, Sadie (three years) and Levi (three months). I have learned to adapt and do things with Sadie like take her for a ride around our neighborhood on my wheelchair, or follow along side of her riding her bike. Levi is still too young for me to be of help in any kind of physical capacity. However, I do sing and talk with him while Brittany is busy or needs a break.
The hardest part of having SMA and being a husband/dad is just the mental aspect. Your mind can get the best of you sometimes. For instance, I’ll want to reach out and massage my wife’s back as she cooks dinner, but I can’t; or I’ll want to go wash the dishes, but I know I physically can’t do that. So, I stay motivated by staying close to God and doing what I can to help out. You just have to adapt and overcome whatever circumstances come your way!
KS: You’ve also produced web content about your life, and at one point tried developing an app for people in wheelchairs. Could you discuss some of those projects and if you have any planned for the future.
BD: I came up with an idea for a game app called RealChair Racing. This was going to be a wheelchair racing game, and the characters would be actual people in real life. They would be chosen through a voting strategy throughout the community across the country and world, and the app would be free with in-app purchases. A portion of the proceeds from RealChair Racing would go to those real life people to help with medical and adaptive equipment that health insurance companies wouldn’t pay for- computers, accessible vans etc.
Also, users would be able to work with our designers to customize their characters and the level of gameplay that their character would be racing through! Unfortunately, we tried to crowdfund the project, but we just didn’t raise nearly enough. I’m so heartbroken because I know how it is not having financial help with things that I need in my life, and RealChair Racing could’ve helped thousands of people. I still hope that one day RealChair Racing will become a reality!
I’m also the founder of “Breakingatrophy”. It’s funny because people read it as breaking a trophy! Only SMA people understand. Anyways, Breakingatrophy is all about my personal life and the crazy, fun things I do everyday. I don’t let my wheelchair stop me from having fun and living life to the fullest. Check out my YouTube channel! https://m.youtube.com/channel/UCgbKhkynnfqifPKr1GQtdHA
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