Lessons that come from a long journey with DMD
A sidelined van has reminded me that despite the curveballs, we persevere
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I walked home from school today. I’m almost 45 years old, yet today, with my backpack on, my empty lunch container stuffed inside, and a sweater tied around my waist, I walked home from school.
As I pondered whether I was overthinking that image, my daughter Mary, 9, who goes to the same school where I’m now teaching, laughed and informed me that I looked like a teenager.
It’s all because life has thrown us a curveball.
If you’ve been following my column, you might think we’re a team of Major League hitters because we’re constantly thrown curveballs. But we’ve learned to swing when they come. This week, our beloved van, which we call The Beast — more precisely, I call us Betty and The Beast because we’re a pair — is out of commission. The transmission blew as a result of problems that prompted a recall.
I’m celebrating that the van will be fixed and the costs covered as part of that recall, but as a family, we’re struggling without our primary vehicle. We’ve learned that because the recall is so large, several thousand vans are awaiting repairs in our state. It could be weeks, if not months, before we get ours back.
A family adapts
My husband, Jason, and I share seven children: Lexi, 23; Max, 18; Chance, 17; Rowen, 15; Charlie, 13; the aforementioned Mary; and Callie, 2. The Beast is a 9-foot-tall, 12-passenger van that can carry all of my children, including Max, Rowen, and Charlie, who all travel in power wheelchairs because they live with Duchenne muscular dystrophy (DMD).
We’ve adapted. For the past two weeks, Chance has been dropping Mary and me at school in his 2001 Chevrolet Impala while Jason has been taking the other boys to school in our backup van. It’s not our usual routine, but we’re making it work.
Thank God our backup van is getting the job done. It’s a little smaller than The Beast, but we removed all the seats so it can accommodate all three power chairs. We recently talked about trading it in for a smaller, accessible minivan. I’m so glad we didn’t do that. If we had, our boys could’ve been stranded.
Actually, we could’ve figured out transportation for Rowen and Charlie through the school district, and Max could’ve stayed on campus or driven his chair home, as we live only a mile from his dorm room. But this week Jason needed to take all three of our sons with DMD to Denver for their clinical trial and neuromuscular clinic appointments.
Although the trial would’ve paid for them to fly to Denver, that would’ve been the first time we’d ever flown with the boys in power wheelchairs, and it wasn’t fair to Jason to have to experience that on his own.
Thankfully, we had our backup van, which we call The Jet. Jason and The Jet got our boys safely to Denver on Monday evening. We’re grateful for these small victories.
But it means that this week Chance is dropping Mary and me at school each morning. Since he has football practice after school, though, Mary and I are left to walk home. The school is only five blocks from our house, so it’s not a big deal. But at my age, I feel we should have reliable transportation for each family member.
This circumstance reminds me of a lesson or two that our Duchenne journey has taught me since my sons were diagnosed in 2010:
- Duchenne will humble you (more than once).
- Duchenne doesn’t care how old you or your sons are, or about any other demographic or economic status.
- Despite the first two, we can figure it out.
Admittedly, I’m tired of always being in a situation that needs to be figured out. Still, I’ve been at it long enough to know that we will, and we have. I kept telling myself that during each walk home this past week. I know we’ll persevere.
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 or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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Mary M Sakowki
God bless you and your husband and family. My son, 49 years has something with his muscles that started about 6 months ago. He thought it was arthritis (I wish it were). His wife couldn't find any Neurologist in their area until January 2025. Thank God she works for a collection company who collects unpaid debts for doctors. She got him in with a doctor about two and a half months later. She had an office in Boston--Beth Israel-Deconess, after doing blood work and some tests, she thought he had FSHD Muscular Dystrophy. She said he had to have Genetic testing, she said it had to be sent out of state this was on 5/30/24 and it would take 2 months or more. Well finally she told him that the tests came back negative on September 9th. Meanwhile he is getting worse and more new symptoms. She is going to send him a swab test and that would probably take two weeks, I don't know if she meant two weeks just for them to get the swab kit. The appointment to talk to him was on the phone, he had to wait about 3 weeks for that appointment. I don't know if she knew already it was negative, but if she did, she could've told him on that date that she made the appointment and just sent the swab test right away. I don't know how you do it with 3 children, you and your husband must be very strong people. I'll put you and your family in my prayers.