What is a day in the life of a kid with Down syndrome like?
I wake Penny up at 6:30 on the dot. She squeezes her eyes shut tighter and groans. Sometimes she pulls her hot pink comforter over her head. But soon she emerges, groggy, and begins her morning routine. She made a chart with her dad and posted it on the wall—brush teeth, take medicine, use the toilet, get dressed. We are all still getting used to this new routine.
Penny’s natural inclination is to move at a gentle and deliberate pace, but now that she is in middle school, that pace no longer works in the mornings. I help her more than I intend to most days—making her breakfast, packing her lunchbox, even brushing her hair, all things she could at least help out with if not do herself, if only we had the time.
This morning, Penny’s six-year old sister Marilee is also in the kitchen. Marilee remembers that she might have a spelling quiz today and she was absent from school on the day the spelling lists were handed out. Her eyes fill with panic and tears. Penny says, “Marilee, do you want to know something?” She waits for her little sister to nod her head. “Sometimes I feel nervous before a spelling quiz too. But then I take the quiz and I know most of the words and then I don’t feel nervous anymore.” Marilee wipes her eyes.
At 7:20 I walk Penny to the front door, she gives me a kiss, and she walks herself down the block to the bus stop. She will walk back through the door at 2:45 this afternoon. Sometimes she comes home to an empty house and gets herself a snack and gives herself fifteen minutes of screen time and does her homework and practices piano and reads. Most days, she comes home to me and we talk about what she’s learning in school—atoms in science class, Islam in social studies, field hockey in gym.
This transition to middle school has been so much smoother than I expected. Penny remembers what day of the seven-day block schedule it is. She remembers what homework she needs to do. She studies for tests. She has made new friends. She is growing up.
Years ago, I wondered what life would be like right now. I worried about other kids—Would they be mean to her? Would she be left out? I worried that I didn’t hear much from other parents of kids with Down syndrome this age. Was it because their kids weren’t cute any longer, as some readers of things I wrote when Penny was little told me to expect? Was it because life with Down syndrome in middle school was hard and no one wanted to tell that story, or no one wanted to read about it?
Now I realize that I don’t have as much to say as I did when Penny was younger not because her days are hard or sad or even uninteresting. It’s just that Down syndrome has become very normal. I don’t write essays about Marilee’s long thick hair or our son William’s food preferences. I don’t reflect that much any more about Penny’s chromosomal condition.
But in the past few weeks, between Down Syndrome Awareness Month and Penny’s transition to middle school, I have thought more about who she is becoming and what her future holds and what it means to have Down syndrome and go through puberty, what it means to have Down syndrome and graduate from high school, what it means to have Down syndrome and be obsessed with brides and weddings, what it means to have Down syndrome and look for a job. The future can easily loom large, like a menacing question mark, if I look too far ahead.
But then I remember the words that Annie Dillard wrote in her book A Writing Life: “How we spend our days is, of course, how we spend our lives.” And how Penny spends her day today—responsible, friendly, encouraging, hardworking, gentle, and not in a rush—is how she has spent her life so far. It is how she will spend her life in the future. It is a gift to walk day by day with our daughter through this life.