How to Rise by Lifting Others with Dystonia

As someone who was raised to have good manners, you can bet your bottom dollar that my own children do too. So I was both ashamed and proud of a recent “dystonia moment.”

Manner Matters

My children are sponges, and they absorb what I say, and what I do.

When I teach my kids manners, I think beyond the “please” and “thank you” and remember that manners are a sensitive awareness of the feelings of others.

I have to admit that as a mom, I have witnessed some pretty embarrassing behavior from my own kids and from other children too.

When my children do something that is inappropriate or rude, I call them out, make them apologize, or take something away from them so that they know I’m not going to stand for that behavior.

It’s human to make mistakes while interacting with others, and it’s important to use those times as teachable moments for children.

But, at church on Sunday, my children were all too quick to point out my own mistake and use the moment to “teach” their momma a thing or two.

ray of light church dystonia
It figures, I guess, that we often experience illuminating realizations at church on Sunday. [Source:]
His Name Is Dylan

The young man was new to our parish.

I’d like to say that being new was why I caught myself staring at this young man, but this is not the case.

Although I knew better, I couldn’t help but notice his right hand was clenched. He walked with a limp because his right ankle turned in and pointed down. His distorted posture made it very difficult for him to sit through mass, and I watched his parents help him.

My oldest was the first to scold my behavior with a, “Mom, stop staring. It’s rude. That’s Dylan; he’s new to school.”

We should have been listening to the preacher, but I l leaned into my son so he could whisper Dylan’s story to me. He shared that Dylan was a junior in high school, probably about 17 years old. He was diagnosed with dystonia when he was 11 years old.

Dystonia is a neurological disorder that affected the muscles in his body, and Dylan had functional dystonia. There’s a scar on the left side of his brain, which affects the right side of his body. The entire right side of his body is affected from his toes to his eyes.

It is very scary. There isn’t a cure. It can only be treated.

As my son shared Dylan’s details, thoughts about his parents flooded my mind. Given the same circumstances, how would I care for my own children?

Call for Compassion

Unfortunately, our kids are not born with good manners. As parents, we’re expected to display good manners ourselves.

I couldn’t definitively defend my behavior to my children.

But later that day, I etched out some time to research dystonia, and I learned a lot about the condition and how a parent cares for a child living with dystonia from this article.

My desire to learn more about Dylan’s condition stemmed from my sense of kindness and compassion – a worthy lesson to share with my children – to rise up by lifting and learning more about others.

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