The woman who stood in front of me in the checkout line at the grocery store had Down syndrome. She was shorter than me by almost a foot and I couldn’t tell how old she was. She had the same broad moon face as my daughter who also has Down syndrome, which gave her the look of someone much younger, but her skin was wrinkled and creased with fine lines around her eyes. When she brought her hand up to scratch an itch on her face I noticed her fingernails were yellow and thick, abraded by fungus, and I made a mental note to keep on top of my daughter’s hygiene.
A tall man in overalls with nearly pure white hair and a matching beard stood in front of the woman’s cart unloading groceries onto the belt. The bottom of their cart was stacked with cases of off-brand diet cola. Paper products filled the top. In the front of the carriage perched a large pink package of sanitary napkins. The man’s large, rough hand emphasized their intimate nature when he plucked up the pads, smiled at me, and placed them on the belt.
“I meant to get pretzels,” he said.
At first I thought he was talking to me. I could see him calculating whether he had time to make it to the chip aisle and back, eyeing the person in front of him who was fumbling through an accordion coupon file. He instructed the woman he was with to put more items on the belt if the line started moving.
“I’ll be right back, Holly. I’m just going to get pretzels.” He said it twice as if to assure her, but Holly didn’t seem concerned. “’Scuse me,” he said quietly as he made his way past my cart, “I’ll be right back.”
It was then I knew he was talking to me, and I wondered if he thought I was the one concerned.
“No problem.” I smiled, hoping to communicate I wasn’t.
My daughter was almost six and I often wondered back then what our future would look like when she grew up. When I came across adults with Down syndrome, an event that’s always been quite rare—indicative, I think, of our society’s great love for perfection—I couldn’t help but be exceedingly interested in them and their families. My daughter is ten now and I’ve had enough experience with people who have Down syndrome to know that their lives are as varied as anyone else’s. The compulsion to catch a glimpse of our future in the lives of others has waned, but I still find myself curious at times when I encounter people with Down syndrome.
I found this woman compelling. It felt like I was meant to be near her, as though she might be the one who would provide me with an answer to the constant unasked question I had about my daughter’s future:
Is she happy? Is she happy? Is she happy? Is she happy?
Holly turned to face me. With just the slightest smile, Holly reached out her small hand with its infected fingernails and shook it briskly back and forth close to my face, closer than would typically feel comfortable for me, but I refused to flinch.
She was waving.
I smiled at her and in a small voice said, “Hi.”
I wondered about the man fetching the forgotten pretzels. I couldn’t tell how old he was either, and I wondered if he was her father. A friend? A hired assistant?
I decided on father when he came walking back toward us with a smile on his face and a galumphing stride, holding two large bags of pretzels in each of his outstretched hands.
“This oughta’ do, eh, Holly? We can snack on these while we wait for dinner.” He smiled at me. It felt like he was talking for my benefit again. I couldn’t tell at first if he was nervous or just chatty, but as the time stretched out, I realized he was friendly and liked to talk.
He talked about waiting to eat and waiting in lines; waiting for the storm, which had brought us together at the grocery store along with the rest of the city, or so it seemed. He wondered aloud at whether or not we’d get the amount of snow the local weatherman was predicting, or if all of us were foolishly preparing for a minor squall, plunking all our money down for bread, toilet paper, and milk we didn’t need.
He told me when he was younger he sunk all his money into his car, but that at some point he stopped sinking it into his car and instead sunk his money into the car’s stereo. He had to make the ride from Charles Village to Silver Spring every day, and his friends would joke that at five o’clock in the evening they always knew where to find him. “On the highway, with thirty thousand of my closest friends,” he said, like it was the punchline of a joke.
Holly’s jacket brushed against a rack of gift cards, knocking several of them to the floor. The man told her to pick them up so nobody stepped on them. As Holly was bending down, she pointed at a small display of Diet Coke and smiled at the man. Her lips pulled back into a smile, baring her small teeth, and crinkling the skin around her eyes.
“Diet Coke,” she said in a rough voice.
The man smiled at me, “Everywhere we go Holly always spots the Diet Coke.”
Holly nodded, greatly amused.
Holly made a motion indicating she wanted some, but the man reminded her they already had diet cola in their cart. “We should’ve named you Caffeine,” he joked, and I thought, Ahh, he is her father. Now I wondered where her mother was, the woman who would be playing the part of me. Was she at home? Had she left? Did she die? Had I died?
When it was finally their turn at the checkout, the man knew the cashier.
“Hey ya, Carole. Haven’t seen you in a while.”
Carole agreed it had been ages.
The man explained they had been spending a lot of time in the hospital over the last several months. I had noted the prescription bags in their cart.
“Oh, really, for who?” Carole asked.
“Well, actually, all of us. My mom’s been in and out for the last four months. My sister—” he said, the sentence trailing off as he nodded his head in Holly’s direction.
Sister? I thought. Now that he mentioned it, he wasn’t nearly old enough to be her father. Her brother, though? I found myself having to let that sink in.
My daughter has a younger brother and I tried to imagine him in this role. Tried picturing him as a man purchasing diet cola and maxi pads for his sister.
I had often wondered what my daughter’s future would look like, and I assumed it would involve both my husband and I in some capacity, but I hadn’t given much thought to my son’s role. I knew he’d be there, around, but I think I must’ve imagined he’d be off living his own life, settled with his own family, or maybe traveling the world. I hoped he would take at least some interest in her well-being, especially after her father and I are gone, but I never assumed he’d take care of his sister. I knew many parents with children who had disabilities expected the siblings to take care of them, but I never wanted to place that explicit expectation on my son.
“I was in the hospital myself back in April,” the man said, catching my attention.
“Oh?” Carole said.
“Yeah, I fell off the roof of the house!” His tone was self-mocking. “Twenty-five feet! I went up there to clear off some branches that fell in that big storm we had, and next thing I know I’m laying on my back on the ground! Landed right on my neck.” He paused, waiting for a reaction.
Carole’s eyes grew wide as she continued scanning the groceries, and the man’s eyes glinted. “Didn’t break a thing. I just remember lying there and thinking, ‘How did I get here?’ I must have been there for twenty minutes when I finally realized I had my cell phone in my pocket and I called 9-1-1. They did a bunch of tests—x-rays—but they didn’t find anything. Learned my lesson about always carrying my cell phone though!”
“My goodness,” Carole said, “How is it you didn’t break anything?”
I was hanging onto every bit of their conversation as though they were laying out scenes from my own son’s life.
“Well. I don’t know how,” the man said, “but I know why.”
Carole stopped scanning a box and held it aloft in the air, “Oh yeah? Why’s that?”
The man nodded his head and glanced at Holly who was bagging the groceries, a gesture meant to be discreet. “I got people who need me.”
I could feel my heart in my chest pushing the blood throughout my body, feeling deeply the heavy weight of our future. It was the kind of weight that comes from great love and great responsibility and the recognition of it filled me with tenderness for the man. I admired him, and I couldn’t help but wonder what this future vision of my four-year-old son as a grown man had relinquished for what he’d been bestowed. His sense of duty and love for his sister was astounding.
Holly was standing at the end of the aisle. She lifted a bag into the cart, and when she turned I noticed a woman sitting on a bench at the front of the store below the big glass panes. She looked frail. Her long white hair cascaded down both sides of her face, and she wore a bright pink wool jacket.
As I watched her watch Holly, I realized she was their mother. Knowing how devoted the man must be to this old woman, the woman playing the part of me, was almost too much to bear. Their mother had not left them, or died. She was sitting at the end of this checkout aisle in a bright pink jacket waiting for her children to finish shopping before the impending storm.
When Holly was finished loading the groceries, she went and sat next to her mother. She put her left hand on her mother’s right one, which had been resting on her knee. Her mother covered Holly’s with her left. Upon that hand Holly placed her right, and her mother slipped her hand from the bottom of the pile and placed it again on Holly’s, at the top of the stack. Holly moved her bottom hand to the top, and her mother followed with hers. They did it again and again. It was a game I had played with my own mother. From the back of the line I smiled as much as they did.
After he paid, the man helped his mother stand up. She only stood as tall as Holly. She and her daughter pushed the cart together toward the door as the man said goodbye to Carole and nodded in my direction before following the women out of the store.
“Hi,” Carole said to me.
I was watching them through the window as the man loaded his mother, then Holly, then the groceries into their car.
“Good man,” Carole said, following my gaze.
“Yeah,” I agreed.
She swiped my groceries over the scanner and said again, as if to herself, “Good, good man.”
When I left the store, the man was slowly winding his car through the crowded lot. I was tempted to rush to my car, throw the groceries in, and follow them. I wanted to see how the rest of our future unfolded. I wanted to drive past them on my way out in the very least, roll down my window and shout, “Hey, wait! I didn’t catch your name.”
I wanted to ask him things: What’s it like? What’s it like to be her brother? To be your mother’s son? I wanted to ask him what happened to his father, and if it was okay that he’d been entrusted with all these lives. I wanted him to answer me: Is she happy? Is she happy? Are you happy?
STORY IMAGE CREDIT: Flickr Creative Commons/heacphotos
Always a good thing when the story makes me cry. Thank you.
This is beautifully written. I love the different perspectives and ending with such haunting questions makes the reader stop and pause. Congratulations!
Thanks for reading and commenting, Terri!
This is a lovely reflection. That you were insightful enough to see beyond a forgetful man and a clumsy girl to the beautiful people inside speaks volumes. I feel like this was an important read for me this morning, as today I move my great-aunt into a memory care facility. It’s such a huge step from the independent living place she was for a year, or even the personal care place that followed. I’m a little nervous about being around people who are lower functioning. Thanks for the reminder to look beyond.
Thank you so much for reading and for your comment. I understand your trepidation as it is always a little scary to do something we are not used to doing. My mother has been living in a nursing home for the last 12 years, prior to that she was in assisted living for ten years due to early-onset dementia. It used to be difficult for me to go to the nursing home. I’m a shy person in general, so when someone talks to me without a filter (which in my experience happens more commonly at the nursing home–partly a result of cognition, partly as a result of folks being older and bolder ?), I often fumble. I’m getting better at it, but I do have to bolster my resolve, and also leave my ego at the door. Before I had my daughter I didn’t have the opportunity to be around many people with disabilities, now I know to just treat all the people I meet respectfully, and to presume comepetence. Even when people are being unkind, or difficult, or behaving in a way that makes me uncomfortable, I try to understand why they are acting that way. I remind myself that everyone is someone who is or was loved dearly by someone. I imagine how once they were more than likely, cradled in the arms of a parent or sibling or grandparent, aunt, uncle, who loved and wanted the best for them. It’s easier that way to see the humanity in everyone. That and a sense of humor can get you through most things. Good luck!
So true: everyone deserves to be treated with respect. I should clarify: mostly I’m nervous about my aunt’s reaction to the different memory issues and accompanying behaviors, especially worried about her just being afraid. So far she’s doing ok – amused, curious, but not fearful or panicking which I was worried about.
My favorite part about this is the unsure sort of dance at the beginning that ensues between the man and the narrator (you). Is he speaking to her ? Has he chosen her? For the end to play out a yearning for more so smoothly, I thought you were able to achieve this progression between the characters beautifully. Also, at the beginning you point out the woman has infected fingernails and by the end you focus on her whole hand in a playful game that is made complete by the mother. To me, this was very thoughtful and healing.
Thank you so much for your thoughtful comments, Daniele.
Tricia, this is lovely and puts some often-absent focus on “the other sibling” and what that life can be, might be…and it is also interesting to see *you* on the outside looking in, for a change, but with far more curiosity, connection, and understanding than most.
Thanks for your kind words, Sara. So many perspectives to consider.
As a teacher, I have seen families fail “the other child” while focussing on the one with disabilities or behavior problems. But this is a powerful statement about those other families that make love and concern a way of life and path of beauty.
Thank you for reading, Jan. It can be difficult to spread the attention around with more than one child for sure.