What My Son With Down Syndrome Saw That Turned My Anger to Awe


It’s 9 o’clock. My husband’s away and I’m doing bedtime solo. The twins are in bed and Grethe’s door is closed. In the chaos of getting two 7-year-olds quiet, I have lost my 15-year-old. This is my boy with Down syndrome, and he likes to run on his own schedule. That’s not how things work in our house, however, and tonight I’m in no mood to play games.

He’s not upstairs. I call downstairs and get no answer. I feel a tinge of anger in my chest. I’m ready to be done for the day. I step out onto the front porch and stare into the darkness of the adjacent school playground, which is Kelly’s default location. I call his name into the night and listen.

“Alone!” is his exasperated reply.

Well, you know what, buddy, I’m not happy, either. We live in a neighborhood so I try not to shriek back. I calmly and sternly inform him to “Get. Back. In. The. House.”

The order is met with silence — a deeply frustrating silence.

I take a breath. My anger is now in my throat and is starting to feel like rage. I envision running onto that playground and dragging him home. But he weighs a solid 125 pounds so force doesn’t work so well these days.

I decide to get myself ready for bed to calm down. I call out very reasonably into the abyss, “Come home now, please!” and I head upstairs.

I brush my teeth and start to massage my face and neck with my nighttime essential oils. I relax a bit, but then through the bathroom window that faces the school, I hear the unmistakable sound of tires on gravel. There’s a car in the parking lot. As I rinse my face, my tired mind starts to wander. Is Kelly still over there? Who’s driving through the school lot on a dark Friday night? We live in a safe neighborhood but still.

Now I feel a different emotion rising: fear.

I finish as quickly as I can and rush back onto the porch. “Kelly!” I scream.

Nothing.

Nora Rozell the mighty.2-001

I don’t really think anything bad has happened, but I don’t know that it hasn’t either. I don’t want fear to take the lead, so l let the anger rise again.

“Kel-ly!”

More silence.

I’m getting really worked up now. But then I hear a far-off noise. A voice talking. It’s coming from over the cedar panel fence in my own backyard.

“Aargh!” I bellow as I head that way.

As his silhouette comes into view, I see he’s frantically waving me toward him. One last, “Kelly, get inside right now,” spills forth, but he just grabs my hand and says, “Shhh!”

He throws his arms out and gestures grandly to the darkness all around. “Fireflies,” he says in a whisper. “Fireflies,” he says again, in a voice that implies, “Don’t you see?”

My blind rage lifts long enough for me to look around. Sure enough, the trees and bushes are putting on a show. Lightning bugs blink and float all about in the soft summer air. The beauty of it in contrast to my anger is like a sudden slap and my eyes sting with tears.

Kelly sits cross-legged on the damp grass and stares in wonder at the show before us. I drop to my knees next to him and lean into his sturdy frame. My tears flow openly now, my demons have left me spent. While I was wasting time with rage, Kelly was sitting in awe.

As we watch this gift of nature together, I drink the sweet, night air deep into my lungs and find my way to calm. We sit in silence until we have had our fill.

Finally, Kelly gets up and reaches his hand down to help me to my feet. “Time for bed,” he says as he pulls me toward the house.

I follow his lead once more.

Follow this journey on NoraRozell.com.

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

TOPICS
,
JOIN THE CONVERSATION

Related to Down Syndrome

Why I No Longer Worry About the Future of My Daughter With Down Syndrome

I don’t know when it happened, but it happened. I went from worrying about my daughter’s future to wondering about it. When Willow has born, Down syndrome was foreign to me. I had no idea how her extra chromosome would affect our lives. The hospital gave me a book, but that just added to the [...]

When My Doctor Said the Most Powerful Thing After My Son's Down Syndrome Diagnosis

With my son Benny turning 2 years old next month (eek), I’m doing a lot of reflecting. I’ve made so many friends, all of whom are on this beautiful journey with me and have little ones with a little extra. Inevitably, when you first get to talking with someone who also has a child with [...]

This Accessible Hotel Is Staffed by People With Disabilities

In the Italian city of Asti is a hotel staffed by people with disabilities. It’s called Albergo Etico. In English, it means “Hotel Ethics.” Hotel Ethics began in 2009 as a restaurant internship for a boy with Down syndrome, according to a Google translation of the hotel’s website. It quickly blossomed into a hotel and restaurant [...]

The Cliche I Heard After My Son's Down Syndrome Diagnosis That's Spot On

I hate cliches. Maybe it’s because my college professors told me to leave them out of news pieces or maybe it’s because I think too much, but I’ve really grown to despise them over the last year. When you get a Down syndrome diagnosis, you hear a lot of cliches from a lot of well-intentioned [...]