SUMMERVILLE — She dabs lip gloss on her daughter’s eyelids and cheeks. A pink rhinestone on her forehead is the final touch. She leans over and kisses her daughter on top of her head.
“Monae, look at Mommy. Look at Mommy,” she says.
Monae grins and squirms in her chair. Her mother, Kalaani Reynolds-Smith, squeals.
“Awwww, Monae, you’re looking just like a princess! You look like a baby doll!”
Monae giggles. She’s 17. Tonight, she’s going to prom. She’s wearing a black tulle dress with a beaded bustier and Converse sneakers bedecked in sequins, rainbow fabric and ribbon. And she has a date with a boy.
“I never thought I’d be getting my daughter dressed for the prom,” Kalaani says.
Monae has a rare chromosomal disorder. Most people have two copies of each chromosome in their genome. As for chromosome 14, Monae has three.
When Kalaani was pregnant with Monae, the doctor said her baby would never learn to walk or talk; she would be bedridden. The doctor said Kalaani could terminate her pregnancy. Kalaani couldn’t.
When Monae was born, she was so beautiful. Kalaani called her Monae Dejaha because it sounded like a silky soul singer’s name. Maybe the doctor was wrong. Maybe Monae had escaped her diagnosis. Maybe she would grow up to be a singer, like her mother, or a cheerleader or a track star or a homecoming queen.
But at 5 and 6 months old, Monae wasn’t doing what other babies were doing. She couldn’t lift her head or turn over. At eight months, she was diagnosed with cerebral palsy. A year later, she started having seizures. Kalaani was devastated.
It was all so unfair. Kalaani wondered: “Why me? Why my daughter?” She cried.
Then Monae’s physical therapist told Kalaani something that changed everything: Imagine a box filled with your expectations. Now empty it and fill it back up with Monae’s likes and dislikes, the things that make her happy, the things that don’t. Let Monae be exactly who she is. And Kalaani did.
At 4 years old, Monae not only walked, she ran. Years later, her seizures stopped. She laughs. Sometimes she coos. She’s started making decisions, like whether she wants Crispix or Golden Grahams for breakfast.
Her date is Eli Evans. He’s 21, a senior. They met two years ago in their special education class at Ashley Ridge High School. Like Monae, Eli has one chromosome too many. He can only say a few words.
But there’s something between them, a magnetism drawing them together. They share a language no one else understands. When Monae is hurting, Eli wraps his arms around her. Eli struggles at making eye contact with everyone but her. In Rachel Gonzales’ special education class, she often catches them staring at one another from opposite sides of the room. Once she caught Monae, her arm outstretched, reaching toward him.
They hug. They hold hands. They dance together. Nothing more.
Is it love? Gonzales thinks so. What else would you call it — this tender, wordless bond?
Monae used to recoil from Kalaani’s touch. Since meeting Eli, she’s started hugging Kalaani back.
Maybe, one day, Monae will learn how to speak. Maybe, if something happens to Kalaani, Monae will live independently with help from a caretaker. Maybe Monae will always have an Eli. Maybe Monae will get married. That’s Kalaani’s dream.
Outside the Embassy Suites in North Charleston, Eli meets Monae wearing a rented tuxedo and teal bow tie, vest and pocket square. His mother bought Monae a white rose corsage. For a moment, amid a flurry of pictures, Monae and Eli interlock fingers before Gonzales leads them inside.
“Good evening Ashley Ridge High School. How you feelin’ tonight?”
The DJ’s voice blasts through the loudspeakers. Pulsing music reverberates out the ballroom doors. Inside, green drapes, wrapped in synthetic jungle vines, hang across the ceiling in keeping with the night’s Amazonian theme. Fog drifts over the dance floor. Lights flash. The crowd swells.
Monae is overwhelmed. So is Eli.
Eli sits cross-legged on the carpet next to the dance floor. Gonzales shepherds Monae into the hallway through a thicket of floor-length gowns and black tuxedos. She holds Monae’s hand while Monae relaxes in a chair.
Monae turns her head and stares at her reflection in a dark window. Her pink eyelids haven’t faded. Her twists haven’t come undone.
They walk back inside the ballroom. It’s time for the Cha Cha Slide and maybe another dance with Eli.
Reach Deanna Pan at 843-937-5764.