The dance floor at my daughter’s wedding had room for all
How a collection of good people naturally included my sons with Duchenne
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I’m officially a mother-in-law! That’s a new title for me. I’m a mom to the seven children I share with my husband, Jason. I’m also a special needs mom and warrior mama to my three sons living with Duchenne muscular dystrophy (DMD). And now I’m also a mother-in-law to my daughter Lexi’s husband, Nick.
They were married on Aug. 3, so I’ve only occupied this new role for a few days. But I love it!
The wedding was perfect. Lexi and Nick smiled the entire day. Their happiness was buoyant, seeming to float down the aisle and all over the dance floor at their reception. Their love shined and was reflected in the faces of their guests.
When my daughter left for college five years ago, I’d planned to spend lots of time in Lincoln, Nebraska, where she went to school. She was on the track team, and I intended to go to all of her meets and get to know her friends, just as I did when she was in high school.
However, the COVID-19 pandemic hit during Lexi’s first year. She came home and finished her first year of college classes online. The track season, like most spring college sports, was canceled. When she returned as a sophomore, the track meets couldn’t have spectators.
During the four years she was in college, two of her brothers, Max, 18, and Rowen, 15, lost the ability to walk.
The boys’ loss of ambulation didn’t stop us from visiting Lexi in Lincoln, but it made it more difficult. She and friends moved out of the dorms into a house that wasn’t accessible. In addition, as we were learning to care for our nonambulatory sons, we found that traveling with them was intimidating; we’re much more experienced now and travel often.
Still, my plans to be a significant presence in Lexi’s college life became challenging. It seemed as if I blinked and she finished school. Then she was engaged.
I knew Lexi’s friends and liked them, but I wasn’t able to spend much time with them until recently. Throughout Lexi’s engagement, I saw them at bridal showers and other parties and got to know them better. And they were as great as I’d initially thought.
At the wedding this past weekend, I spent more time with the fantastic people who’ve surrounded and loved my daughter as she’s blossomed into a strong, independent, and now married woman.
Special wedding dances
My sons with Duchenne have been to dances with friends, especially Max, who attended prom and homecoming in high school. But at those events, they weren’t on the dance floor. They were on the party’s outskirts, trying to figure out how to get to the dance floor.
Lexi’s wedding reception was nothing like that. Max, Rowen, and Charlie, 13, were on the dance floor most of the night. They were often so far amid the young people moving to the music that I couldn’t see them from my seat. Lexi’s friends were amazing.
I’ve never met people so open to my sons. True, people are generally friendly and try to include them. But Lexi’s friends did more than try; they did include them, holding the boys’ hands and dancing. They kept coming off the dance floor to bring the boys back if they’d stopped for a break. And they didn’t just dance; they talked and laughed. When all the groomsmen took off their shirts and jackets and were wearing just the vests of their tuxes, it wasn’t long before my sons were out there with them, bare-armed in just their vests, too.
No one told my daughter’s friends to ensure the boys had fun at the dance, and no one showed them how to engage my sons. Yet they did it as if it were as natural to them as breathing, as if they’d spent their lives dancing with wheelchair users.
It was a fantastic night for so many reasons, but definitely because of the people we spent it with. I’m not surprised that my daughter’s friends and new family are good people.
My daughter has lived around Duchenne since her younger brothers were diagnosed when she was 9. She’s always gone the extra mile to include them in everything she’s done. That kind of generous love attracts good. I’m thankful for all the good surrounding my daughter. And I’m happy those people surrounded my boys on the dance floor!
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.
Comments
Linda Mason
I’m so happy that your daughter’s were so inclusive with your boys. It’s a beautiful story that is very inspirational! I have a different form of MD and this reminds me to keep seeking the good in people!
tj
Congratulations on your daughter's wedding and your new title as mother-in-law :)
I just want to ask one question here though, Did your daughter get tested for carrier status for duchenne. As she is in new phase of her life, if she is planning to have kids in the future please please please get her tested for carrier status. it is crucial for her to get tested.
Christena Estby
I can’t tell you how much I love this. I read your column every week, but this one hit home. My oldest son, 21, is maybe kinda almost engaged, and my daughter, 19, is definitely deeply “in like” and away at college. It’s really hard for her 2 brothers with Duchenne to visit at college because she’s 2 1/2 hours away and although the “campus” is accessible, her apartment is not, and some of the places we’d want to go with them near campus are questionable 🤣
Her friends are amazing. My son’s girlfriend (they live locally) are just so natural and wonderful with the boys.
I look forward to a lovely wedding celebration just like you describe here!!!