Celebrating a new high school experience for our son with DMD
What might seem typical to others was a milestone for us
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It was almost midnight on a Friday night, and for hours, my husband, Jason, and I hadn’t seen or heard from our oldest son, Max, who has Duchenne muscular dystrophy (DMD). In most situations, we would’ve been out of our minds with fear. But that night, we were smiling. Max, 17, was at his first high school party.
Here’s the backstory: We have seven children, three of whom — Max, Rowen, 14, and Charlie, 12 — have DMD. I also have three kids in high school — Max, Chance, 16, and Rowen. That means we have a chaotic schedule.
Last week, Max, a senior, had opening night for his fall play. But on the same night, at the same time, and two hours away, Chance had a playoff football game.
Those were big nights for both boys, and deciding how to conquer the two activities tore our hearts out. It was Max’s final opening night for a play (although he’ll be in a spring musical), and it was the second round of playoffs for Chance, who might never play that far into the postseason again.
We decided to go to the football game, because Max had two additional performances we could see, and because he plans to continue acting in college, so we’ll have more opportunities to see him perform.
A surprising end to the night
My mother-in-law attended opening night of the play and was Max’s cheering section. But to go to the football game, we had to figure out how Max would get to the theater. We needed someone who would be comfortable driving our 12-passenger van. We also needed someone to help Max get changed out of his costume, and to give him another ride to the cast party afterward.
It took some brainstorming, but we finally figured it out. Max has a friend in the crew of the show that he is comfortable with. We asked his friend if he’d take Max to the show and then to the cast party, and he agreed. He also agreed to help Max get his costume off and change into street clothes for the party.
We wanted to pay this young man for his help, but he refused. He said Max is his friend, and he doesn’t need money to help a friend. I could’ve kissed him on the cheek. We don’t often encounter that kind of kid on our journey with DMD.
That night, we returned home from the football game around 11 p.m. We put our other kids to bed and waited for Max to return from the cast party, and for Chance to come home with the team on the bus. Chance got home first. Chance is our only son without DMD, so he’s always the last one home. Even he smiled when he realized Max was still out!
My husband and I texted Max to see when he would be home. Neither of us imagined he would stay out so late, so we hadn’t even thought of giving him a curfew. But Max wasn’t texting back. He was having too much fun.
Also — and I’m embarrassed to admit it — it was such a new thing for Max to go anywhere without us, or without a school bus to drive him, that we never asked for the party’s address. We knew the name of the student hosting the party, but not where he lived.
For the first time in Max’s life, we didn’t know where he was. But because he was having such a typical high school experience, we laughed, smiled, and celebrated.
Max finally texted us once he had left the party. He got home around midnight. His friend came in, and they told us about the night. Then Max stayed up and played video games until the wee hours of the morning.
The next day, Max was so happy to have had the experience. Going to the cast party with a friend and not getting dropped off or picked up by a parent was fun.
Max never even mentioned the fact that we had missed opening night, because our absence had opened him up to a new experience. He now hopes to have more of those nights. His dad and I want that for him, too, but next time, we’ll remember to set a curfew and ask for the address!
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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