Something so seemingly personally profound and significant just happened while I was standing in line at the grocery store that when I came home I asked Alex if he would put the groceries away so I could go directly to my room and write about it.
So here I am.
With the impending storm, the store was crowded and I got on line reminding myself that I had no place I had to be. I could afford to be patient. When the woman in front of me turned around, I saw that she had Down syndrome. She was shorter than me, wore an Obama baseball cap and a Ravens jacket, baggy jeans, and dingy sneakers, all of which were decidedly in need of a wash. Most of her fingernails, I noticed when she brought them up to scratch an itch on her face, were yellow and thick, eaten away with fungus. I remember noting to myself that I needed to keep on top of my own daughter’s fingernails.
It was hard to tell how old she was, I didn’t even venture a guess—something I consciously do around people with Down syndrome because I am seldom correct—but she looked to be easily in her thirties, though could easily have been much older. She had that old-young quality that I find many adults with Down syndrome have. She was behind the cart, directly in front of me in line, a tall man with white hair and beard wearing overalls was in front of it near the belt.
The cart was piled high with paper products, diet cola, and root and leafy vegetables. There was a large package of Poise sanitary cups which I note because I remember thinking about what an intimate product they were as the man, clearly a working sort, picked them up and placed them on the counter with his big hand. That’s when he said, “Oh! I meant to get pretzels,” to the woman behind the cart. He instructed her to come around to the front of the cart near the conveyor belt and start putting things on the belt if the line started moving (there seemed to be a hold up in front of them).
“I’ll be right back, Holly. I am just going to get pretzels,” he must have assured her two or three times.
She didn’t seem too concerned. That’s when I realized maybe he was assuring me? Maybe he was worried that I would sigh, or roll my eyes. Maybe he worried I might be thinking something like “You’re going to leave her in charge?” I smiled trying to assure him. I was in no rush.
Oddly, I remember thinking something like “I am supposed to be in this line.” I remember thinking, the perhaps incongruous thought, “If anyone says anything rude to this woman, I am going to freak out on them.” I think I read so much about other people’s encounters with people who have DS in the community that I am, myself, poised. I want to learn some great deep secret, or be prepared to fight injustice should it arise. I mentally DARED someone to say the word “retard.”
I should note that around me people were sighing left and right about the turtle’s pace of the lines. I was bound and determined to keep positive and patient myself, but it didn’t seem that most others were on the same page.
I needn’t have worried. Our line wasn’t moving because of something going on with the woman in front of Holly. If anyone was going to complain about how slow it was going it would not be her fault. (Writing this, I wonder what this supposition says about me and my expectations. I am not unaware of that.) As slow as the line was going, I was bound and determined to stay in it. I am going to admit something that probably sounds ridiculous to most, but I know my other DS moms, most of them anyway, can relate. I needed to be near this woman. I wanted to be. I get a little surge of excitement when I see people with Down syndrome out in the community, perhaps because I so rarely do, and while it has spiked and abated at various times since I became a member of “the club,” tonight, I was ready to observe. What is life like for this woman? I know she has poor general hygiene. That’s a bummer. But the man with her seems so concerned and nice. Speaking of which, who IS that man? etc etc etc….my mind raced.
If I thought it was hard to determine Holly’s age, it was equally difficult to determine the man’s. I thought it could be her father, then perhaps someone who was hired to be there with her. With his white beard and big hands, the way he spoke to her, though, he seemed related.
I settled on father. Before he came back with two large bags of Snyder’s pretzels, as he was walking towards us, Holly turned and looked at me again. It almost felt like she was staring into my very soul. I know that sounds a bit much, and I am hardly the sort who believes people with Down syndrome are angels. But there you go. It looked like you might imagine it would look if someone were trying to look deep into your soul. In hindsight, I think she was just focusing her eyes, but in the moment, it felt intense and I didn’t want to look away. She reached out her hand, closer to me than you might think one would for the action she was about to make, and waved at me. No words, but a small, the slightest really, smile, and her small hand with its infected fingernails shook quickly back and forth in my direction. I smiled at her. In a small voice, I said “Hi.”
The man came up to us saying, “This ought to do, huh, Holly? I thought we’d get hungry while we’re waiting for supper to get on the table.”
He smiled at me. He seemed intent on talking to me. I don’t remember the exact discourse of our conversation, but we talked about waiting to eat, waiting in lines, waiting for the storm. He told me when he was younger he used to sink all his money into his car, but at some point he stopped sinking it into the car and just sunk it into the car stereo. He had to make the ride from Charles Village to Silver Spring everyday and he said his friends would joke that at 5 o’clock they knew where to find him, “On the highway, with 30,000 of my closest friends.” I wondered what work he once did. Somewhere in the course of the conversation I had gleaned that he no longer did it, whatever it was.
Holly’s jacket brushed against a display of gift cards knocking several of them down and when she didn’t notice, the man told her she ought to pick them up so no one stepped on them. She did and as she was bending down she pointed at a display of Diet Coke.
“Diet Coke,” she said, smiling at the man.
“Yeah. Diet Coke,” he said. “Everywhere we go, you always spot the Diet Coke.”
She indicated that she might want it, but he reminded her they had diet cola in the cart and that it was much cheaper in the cans. He ribbed her saying “You should have been called Caffeine!”
When it was finally their turn at the cashier, the man knew the woman behind the counter.
“Hi, Carole,” he said. (I know she spelled it with an ‘e’ because it was on her name tag.) “Haven’t seen you in awhile!”
Carole agreed. It had been ages.
They got to chatting. The man mentioned that they’d been spending a lot of time in the hospital over the last several months. I noted the prescription bags in the front of the shopping 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.
His sister? Now that you mention it, I thought, he wasn’t nearly old enough to be her father.
His sister? I found myself having to let that sink in. So he wasn’t Alex in this fantasy scenario I was creating about our possible future selves?
You see, I’d created this whole world. I’d even wondered if Holly’s mother (or, as the case may be,*I*) was home or if she (I) had maybe left them…or died. But this man wasn’t Alex. He was Rainer!
The man went on chatting with Carole. “I was in the hospital myself back in April.”
“Oh, really?” Carole asked, concerned.
“Yeah, I fell off the roof of the house!” the man said, mocking himself more than bragging. “25 feet! I went up there to clear off some branches that fell in a storm, and next thing I know I’m lying on my back on the ground! I landed right on my neck.”
Carole looked ready to ask a question when the man said, “I didn’t break a thing”
Carole looked at him incredulous.
“I just remember lying there and thinking, ‘How did I get here?’ I must have been laying there for twenty minutes when I finalized realized I had my cell phone in my pocket and I called 911. They did a bunch of tests, but didn’t find anything. Learned my lesson about always carrying my cell phone, though!”
Carole looked at him with all the surprise and compassion a checkout person is supposed to use when talking with a customer. “Wow.” And “My goodness!”
I sound cynical, but she did seem genuinely concerned.
“How didn’t you break anything?” she marveled.
I was hanging onto every bit of this conversation like they were playing out the scenes of my own son’s potential future life. Holly, for her part, was helping bag groceries.
The man said, “Well. I don’t know how. But I know why.”
Carole looked at him with interest, “Oh yeah?” she asked, “Why’s that?”
The man sort of glanced over at Holly, a gesture meant to be discrete from his sister, and said, “I’ve got people who need me.”
That’s when I almost started crying. At my imagined son all grown up. At his love and sense of duty for his sister and, I realized when he stepped back and I saw the frail woman sitting at the bench at the end of the aisle, long white hair draped down on both sides of her face, a bright pink jacket on, his mother—me.
In this fantasy version of my potential future, I was the frail woman sitting on the bench, Holly, my “daughter,” came and sat next to me while her brother paid.
When Holly and her mother stood to leave, I noted how her mother hunched and stood about as tall as Holly. The two of them pushed the cart out together as their son/brother said goodbye to Carole and I, and ushered the girls out to the parking lot.
“Hi,” Carole said to me, taking my store card from my outstretched hand.
“Hi.” I smiled at her.
She handed me my card.
“Good man,” she said.
“Yes,” I said.
Carole swiped my bottles of kefir over the scanner, “Good, good man.”
When I walked out to the parking lot after I’d given Carole my money and bid her goodbye, Holly, her brother, and her mom, were still winding their way to their car. I was tempted to keep following them, although of course I wouldn’t. I was tempted to drive past them when I was leaving, roll down my window and say to the man, “I didn’t catch your name. You are a good, good man.”
I was tempted to ask him things like “What’s it like? What’s it like to be her brother? To be her son? Can we talk? Let me ask you questions. Let me ask Holly. Let me ask your mom. What made her keep your sister at a time when most people were not keeping their children with Down syndrome? What made her strong enough to know? Is it okay with you, this life? That you clearly have people relying on you? That one of them is your sister? Is she happy? Is she happy? Are you happy? And your mom? And your sister? Where’s your father?”
So many questions that weren’t even really words yet in my mind. Some of them I thought about on the way home as I wound my way home through our little village.
I know it’s a little funny that I even pretend those people are us. Sure Holly and Georgia both have Down syndrome, but their lives are no more OUR lives than my life is Carole's, or anyone else’s in the supermarket. Early intervention and the changing attitudes of people with Down syndrome aside, we are different people, cut from different cloths, living in a different time, with different beliefs and ideas and experiences…I could go on and on why their life is not a prescription for ours.
But driving away from the store it felt profound to ponder what it might be like one day. Georgia and her brother grocery shopping together before a storm, him speaking gently to her and handling her delicate matters. Me, frail and old. And what of Alex?
For what it’s worth, I hope it doesn’t happen like that. Nothing against that family and how it’s working out for them (and it DOES seem to be working), but I hope to have a little more vim and vigor in my old age, I hope Georgia is more independent, and I hope Rainer is not tied to us by bonds of blood and honor. I hope Alex is in the picture, too!
But it felt profound on this Monday evening. It felt profound and beautiful and scary and wonderous. And I wanted to share.
