Down syndrome – Joy Elizabeth

At 7 a.m., the duvet is thrown off my body. I open one eye to find the duvet. I reach down and pull it back up to my chin.

“Be a good girl, Joy,” I mumble to the toddler standing next to me.

Joy grabs the corner of the duvet and pulls it down to my knees.

“Okay, Joy,” I say. “I’m up.” I yawn. “Maybe once in a while you can pull the covers off Mommy.”

Joy takes my hand and leads me to the kitchen.

We agree to have Cheerios for breakfast, and chocolate milk to drink. And a bagel with lots of cream cheese and jelly. I make a cup of pour-over coffee.

Joy gives me a kiss that leaves a smear of cream cheese on my cheek.

“Sit,” she says. This is Joy’s latest word, and it’s perfect. I understand her completely.

“Sit?” I ask in feigned ignorance.

“Sit.”

So I sit next to her at the kitchen table. And she makes funny faces and hilarious hand gestures. I laugh.

Later, downstairs, Joy climbs on the stationary bike.

“Sit,” she says to me, pointing to the rowing machine.

So I sit on the rower and watch her try to reach the pedals on the bike. (Never gonna happen.) She gets off the bike and taps me on the shoulder as I work the rowing machine.

“Sit,” she says, pointing to the bike. Joy takes the rowing machine. I hop on the bike. Joy is very adept at the rowing machine.

Then she gets down on the carpet. She slaps the floor with the palm of her hand.

“Sit.”

I sit next to her and she immediately pushes me onto my back.

She leans over and gives me a kiss on the lips and then a peck on each eyelid.

Throughout the day, Joy will find a moment to take my hand, look up at me, and say, “Sit.”

To be honest, I do a lot of sitting already. My job is sitting at a laptop and moving words around.

But to Joy, sitting is daddy-daughter time. It has nothing to do with work.

To Joy, sit means “close the laptop and hold me on your lap instead.” Sit means “sit next to me, Daddy, and help me with blocks.” Sit means “spend time with me, watch me splash in the tub.” Sit means “see what I can do, Daddy.” Sit means “stay home a while longer.” Sit means “I love you.”

So, sit is my favorite word. For now.

Because, dear daughter, there are more words on the way, like dancing, skating, bowling, musicals, movies, swimming, picnics, and a hundred others.

Joy is now attending school—preschool. Four days a week at a wonderful Francis Howell program that meets children’s educational needs and is developmentally appropriate for all children, including Joy.

She comes home at noon and she just goes on and on about it. I’m not sure what she’s saying, but clearly she loves the three hours she spends doing things with her teachers and other kids her age.

Joy loves to draw. I took joy to Cracker Barrel the other day. After we got her finger unstuck from a hole in the table, Joy drew with crayons on the kids’ menu. She laughed when she finished her drawing. We then had pancakes and eggs and bacon. It was awesome. I assumed that all restaurants had gone downhill since the pandemic. I stand corrected.

But Joy really loves to draw on the walls of the new house. As you may know, we (mostly Peggy) painted about a month ago. The kitchen is now light yellow (Toasted Yellow). The living room is green (Greywood). Other rooms were painted in other earth tones, as well as white, cream, blue.

We have tried to keep pencils and pens out of Joy’s reach because she absolutely will fill up blank spaces with her art.

A few days ago, I walked in the living room and found Joy with a pencil. She was drawing on the living room wall. (I had done an editing test that day and left the pencil on the kitchen table.)

I said, “Oops. No, Joy! Let Daddy have the pencil.” She handed it to me. She smiled. Then she looked down like she was sorry or guilty of a crime.

I started walking around the house to see how much mural she had done.

“Let’s see,” I said to myself. “Every wall in the kitchen.” I continued walking. Every wall in the living room. The foyer. The walls in Joy’s bedroom. Every square inch of every wall in the master bedroom. The hallway. The bathroom. The staircase. I frowned.

I opened the box of magic erasers that I got on Amazon. It’s a 100 pack. I started erasing the hallway art.

I wasn’t mad. But I was a little sad. Because clearly Joy did this project alone. She worked on her masterpiece for at least an hour while everyone else was busy doing other things—running errands, talking on the phone, working, texting, heading to practice at the gym. I wished I had come home a bit earlier and could have stopped myself from taking her pencil and had kneeled down and watched her technique.

I think I want to get some large poster board. I want to tack it up all over the house. And I want to watch my baby make her art.