How Summer Jobs Remind Me My Sons Are Not So Different

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by Betty Vertin |

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Summer! The best time of year for my kids. We are currently counting down the days left of school. In Nebraska, school is out for summer break by the middle of May. So next week, all my children will be on summer break!

My kids will spend plenty of time in the pool and going to movie matinees. My oldest three will all have summer jobs, including my 16-year-old son, Max, who has Duchenne muscular dystrophy (DMD). He works at the local water park in the concessions stand, so we usually make a few trips there as well, more for the funnel cakes than the swimming.

In June, my three sons with Duchenne even plan to attend an in-person MDA camp. They’re excited to return after a two-year hiatus due to the pandemic. Although my boys have one another, they appreciate spending time with other children their age with muscular dystrophy. I think it’s good for them to meet other people who are so much like them in so many ways.

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This morning I spent four hours completing the applications for camp. It should take less time, but providing information about all their medicines and how exactly they need help in the bathroom, shower, brushing teeth, and even cutting their food — well, it takes at least four hours for all three boys.

It was also four hours focused on how different they are from their siblings and peers. If I were sending my son without DMD, Chance, off to football camp, I’d sign the waiver and make sure he had enough socks. Easy, peasy.

Speaking of easy, it’s effortless seeing how different my three with DMD — Max, Rowen, and Charlie — are. It’s also easy to see how different Duchenne makes their lives from their peers and siblings and from what I imagined. Sometimes that’s heartbreaking; more often, I see it as our standard, even if it’s far from someone else’s normal.

But you know what feels lovely? It feels lovely to remember how much they are like every other kid.

As we prepare for summer here at the Vertin house, my husband, Jason, and I and our two oldest boys talked about those summer jobs. During one of these conversations, Chance asked his dad how much money was in his bank account. I know he should know that without needing Dad’s help, but we’re getting there! It’s baby steps with teenagers sometimes.

My husband decided to check Max’s account, too, thinking Max had nearly all the money he made last summer still in his account. But he was shocked to see it diminished. Jason looked to see where it had all gone and saw many purchases from PlayStation. The kid had purchased and downloaded new games all year!

I’m laughing because although I knew he had done that a couple of times, I didn’t think he had done it so often or spent so much. We let the kids spend their money as they see fit and sometimes tell them to use their own money on something they want, but obviously we don’t monitor it too closely.

But it was an excellent reminder that even though Max has Duchenne, which changes how we do some things, at the end of the day, he’s a typical teenage boy. His disease doesn’t define him or how he spends his money.

Note: Muscular Dystrophy 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 Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.


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