I’m glad my sons with DMD are not trick-or-treating this year
Despite our family's love of Halloween, the decision has brought me relief
It’s no secret that I love the holidays. If you look through my past columns, you’ll find some about Christmas, Thanksgiving, and birthdays. I derive so much joy from creating a celebration for my family.
Halloween is no exception. I am the queen of a good trunk-or-treat. Three years ago, I won a first-place trophy for transforming our accessible van into a three-ring circus, inspired by “The Greatest Showman.”
I love all things Halloween decor. Jack-o’-lanterns, skeletons, and witches’ hats adorn my home in October. And the candy — well, if you don’t love yourself a mini Snickers bar, I don’t think we can be friends.
The costumes are fun, too. My family even dressed up according to themes for several years. In addition to the circus crew from “The Greatest Showman,” we have been the Addams Family, “Star Wars” characters (my husband, Jason, was the Han Solo to my Princess Leia), and a band of pirates.
I spent most of this morning scouring the internet for the best costume buys for my kids. There is no theme this year, but the kids have thought of good ideas. We will have Boo from “Monsters, Inc.,” a zombie cheerleader, Lord Farquaad from “Shrek,” and NFL player Jason Kelce’s “Fat Batman.” My other kids plan to piece something together from previous years’ costume leftovers.
Holidays with Duchenne
Three of my sons — Max, 17, Rowen, 14, and Charlie, 12 — have Duchenne muscular dystrophy (DMD). Duchenne often has been monumental in helping us realize the true meaning of the holidays.
Our blessings at Thanksgiving seem plentiful when considering everything DMD could take away or change. At Christmas, our family’s love and presence have always been the best gifts. The freedoms celebrated on the Fourth of July have never been lost to me as a parent of children trying to gain and maintain independence. And all of my kids have always enjoyed the fun of Halloween.
There has been a silver lining to trick-or-treating with Duchenne. My sons with DMD all participated for a few years longer than their typically developing peers because they look so much younger than they are. (Thank you, corticosteroids!)
My sons loved trick-or-treating, and Jason and I did everything possible to make it happen for them. When they were still in elementary school and wanted to incorporate their mobility scooters, Jason made elaborate scooter costumes out of cardboard.
The end of a chapter
But if there’s one part of Halloween that I’m glad is over, it’s trick-or-treating for my boys. This year, my sons with DMD have decided they won’t partake, and I’m not sad about it.
Trick-or-treating with Duchenne is hard, and it sucked some of the joy out of the holiday for me.
Even when the boys were very young, stairs were hard for them, so Jason and I had to carry them up and down the stairs and help them navigate the porch at each house. As they got older and the disease progressed, the boys took their mobility scooters and eventually their wheelchairs. Still, it was up to Jason or me to go up to the door and ask for candy for the three boys sitting at the bottom of the steps.
I didn’t like being so actively involved in trick-or-treating while other parents stood at a distance and smiled at their child’s independence. The pitiful glances or, worse, looks of misunderstanding and judgment we received from other parents and those handing out candy made me sad.
As our other children got older and started to go trick-or-treating with friends, Max, Rowen, and Charlie were often left out of group invitations. It saddened them and me, but they always were happy to go with Mom and Dad. And if somebody did invite them, it wasn’t easy to figure out how to transport their scooters or chairs, and we’d have to explain to others how to help them.
Fatigue management has always been an issue for Rowen, and he’d be ready to go home and count his candy long before his siblings. There would be tears if we made him stay out a little longer, and there would be tears if we called it a night before his brothers and sisters were ready.
Writing it all down only reinforces how much DMD took away from trick-or-treating. So often, I mourn things that end because of Duchenne, but I’m glad this phase is over. It will be nice for Jason and I to take our two younger girls out to trick-or-treat. And it will be fun for the boys to wear costumes and hand out candy while watching scary movies.
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