Lighting the Way

From A Cup of Comfort for Parents of Children with Special Needs (Adams Media, 2009)

 

Lighting the Way

 

The gymnasium is packed with families seated around a dozen banquet tables. Decorated Christmas trees stud the corners of the room, and red-and-green crepe paper streamers ribbon the walls. A banner stretched across the stage at the front of the room reads: “Happy Holidays from Uptown Downs!”

 

This is the first time my children and I have come to the annual holiday breakfast hosted by our local Down syndrome support group. The room is crowded and hot and noisy with the din of hundreds of people. The tables are full of plates of pancakes and sausage and cups of orange juice, some of which have been knocked over by kids’ elbows. My toddler Thomas is squirming on my lap, and my older kids are arguing over who has the most syrup. I’d been looking forward to this event for weeks, but now I’m beginning to wish we’d just stayed home.

 

Then the lights dim, and the dancers take the stage.

 

Wearing red sequined jackets and black pants, a dozen children and teenagers with Down syndrome line up in position. “Please welcome the Sparkly Pals,” announces the emcee. As a heavy funk beat begins, the dancers set in motion with a hip-hop routine. In unison, they twist and twirl, bounce and bend.

 

“You’d better get this party started,” the lyrics ring out.

 

And we do. Within moments, the hundreds of people in the audience are clapping in time with the music, cheering aloud as the dancers strut their stuff.

 

I clap along with the crowd, amazed that I feel so comfortable. The year before, soon after Thomas was born with Down syndrome, I saw the holiday breakfast advertised on the Uptown Downs Web site and wondered if I’d ever want to attend. I couldn’t imagine walking into a party full of kids with Down syndrome and their families.

Actually, I could imagine, and the image made me squirm. I pictured myself standing awkwardly in a corner, holding Thomas, unsure of how to interact. The people with Down syndrome I’d met in the past made me uneasy. Thoughts, feelings, quirks, whims—everything about them was right up front, right on the surface. Their lack of self-consciousness increased my own. I didn’t know how to respond to such spontaneity and openness.

 

Funny—that same openness seems delightful now. These red-sequined dancers have no inhibitions. They move with utter freedom, with the joy and confidence of being at ease in their own skins. And that ease is rubbing off on the rest of us. My kids grin at me and point to their favorite dancers onstage. On my lap, Thomas rocks to the beat. In a few years he’ll be old enough to join the dance troupe. I can’t wait.

 

After the hip-hop number comes a holiday medley. During “Santa Claus Is Coming to Town,” a teen boy in a leather jacket and a red Santa hat takes center stage and strikes Elvis-style poses, while a posse of teen girls dances around him. A gorgeous little girl with long brown hair and tiny glasses dances solo to “I Saw Mommy Kissing Santa Claus.” The final number, “Jingle Bell Rock,” brings down the house. Flushed and happy, we cheer wildly as the dancers bow.

 

The crowd quiets as the next group of performers comes onstage: madrigal singers from the local high school. Sixteen in all, the girls wear matching emerald-green formal dresses, the boys wear tuxedoes. They sing with measured voices polished to a shine, moving gracefully into different formations with slick theatrical style. Chestnuts roast in the warm glow of their voices; sleigh bells ring in pitch-perfect harmony.

 

The piano accompaniment ends, and the madrigals begin singing a cappella, a beautiful Christmas song I’ve never heard before. Round, clear notes soar through the room, creating a magical moment when the world stills and the air fills with beauty.

But instead of joy, my heart wells up with incredible sadness. These young men and women are breathtakingly talented, bright and beautiful as snowflakes, brimming over with gifts for the world. The contrast between them and the Sparkly Pals twists my heart with grief.

 

Then a new song starts. “Rudolph the red-nosed reindeer . . .”

 

The kids in the audience—those with Down syndrome and those without—sing along with the madrigals, shouting “like a lightbulb!” and “like Monopoly!” at the right times. But I can’t smile. Thomas will never be able to compete with these superkids onstage and the “normal” kids in the audience. He’ll struggle to learn basic skills that they pick up without effort, and even if he does his very best, he still won’t measure up. I picture people staring at Thomas, teasing him, ridiculing him. He doesn’t have a shiny red nose, but because of his extra chromosome he’ll forever stick out in a crowd, just like Rudolph .

Smiling as they sing, the girls in formal dresses stretch their arms forward, beckoning for the kids with Down syndrome in the front rows to join them onstage. Then the guys motion with their arms, inviting those in the back rows to come forward. Adults hoist the children up one by one until the stage is full.

 

They sing together onstage, arms around each other’s shoulders, swaying to the music in an unlikely combination of formal gowns, tee-shirts, tuxedoes, and bright red sequined jackets. The madrigals’ careful steps give way to easy, spontaneous movement. Bow ties are knocked askew. Tendrils of hair escape from the girls’ elegant up-dos. Within moments, they’ve transformed from meticulous performers to starry-eyed children eager for Christmas.

 

By the time “Rudolph” ends and “Jingle Bells” begins, my sadness is gone. Kids with Down syndrome might not ever look or sound like madrigal singers, but they have other gifts to give the world. I see those gifts onstage now in vibrant color. Friendship flows with the music, and pure joy shines on every face. I realize that every person, no matter how many chromosomes they have, can offer peace on earth and goodwill toward men—the ultimate gift. And we might be surprised by who ends up lighting the way.

 

 

 

Welcome to the website of KLS:

seeker, writer, editor, loudmouth, mother of many, depression survivor, disability advocate, Greek-blooded American, salted caramel addict and Radiohead groupie. (Not necessarily in that order.)

Art credit: "Altered Waters" by Leslie Graff

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