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Matches and Steak Knives

When I was first diagnosed with Parkinson’s Disease, I read an article about care-giver burnout. It talked about how people who take care of Parkinson’s patients can say things they later regret. I gave each of the children a copy of the article and I told them that whatever they might say to me when I’m at my most burdensome is completely forgiven. I read the article to Lily. She said, “I never never be mad at you, Mommy. It not your fault you're sick.” I smiled and thought that someday, she would understand. To this day, I don’t think she does. I really don’t think she ever will. Lily actually enjoys taking care of me, which is why I don’t feel bad about asking her for help. I try to feed myself breakfast and lunch, but I often don’t get much down and I lose what little appetite I started with before I’m through. I’m so worn out by the end of the day, I can’t get the fork from the plate to my mouth. I’m always happy to let Lily feed me dinner. On meat loaf nights, I don’t give her much trouble. But tonight is roast beef and the texture makes me think of cows, which is not necessarily what you want to think of when you eat beef.

“Do you wanna bite uh peas?” she asks, holding the fork, with two peas on it to my mouth.

“Yes, please, Darling.”

“Now, do you wanna bite uh rice?”

“Yes, please.”

“Now, do you wanna bite uh meat?”

“No thank you.”


“Yes, please.”

“Then eat a bite uh meat.” She sticks the fork into the shreds of flesh and holds it to my mouth.

“No, thank you.”

“C’mon,” she says, cheerfully, refusing to budge the fork. “Bite uh meat.”

“No, thank you.”

“I cut it smaller.”

“Smaller? It’s practically puree.”

Her fingers are chubby like sausages wrapped around the knife. She rests her tongue between her lips as she saws at the meat. The fork, now in her left hand, makes a wide arc before it reaches my lips. My pity for Lily’s lack of coordination moves me, and I decide if she put that much effort into getting it to my mouth, the least I can do is eat it.

“How’s that?” she asks, dabbing my mouth with a napkin.

“Fine, Honey.”

“Do you want your pudding?”

“OK. Sure.”

“Have two more bites of meat.” That was an old trick that always worked with Lily when she was little and counted carbohydrates most prized among all pleasures. It was amazing the healthy things she would agree to eat in order to get a slice of buttered bread. I usually had to stick the vegetables in her mouth myself to get her to eat them because her hands refused to be coerced by my nutritional blackmail. But her mouth was willing. For a short time, there was one exception to the rule of carbs, when I didn’t have to trick her mouth into opening. Lily would eat any free sample at Costco, even if it was protein. Probably even if it was protein in the form of a grub worm, though I never did test that theory. She would go nuts at the sight of a toaster oven and a tray of toothpicks and gobble up any ethnicity or consistency of food served by a senior citizen wearing plastic gloves and a hair net. Then she would beg for more, which of course, is out of the question, unless you’re willing to dip into your 401K to finance the purchase. If your child should happen to ask for seconds, you will quickly learn that every free sample distributor has apparently received special training in eliminating freeloading through nonverbal cynicism, specifically a scowl, followed by a sideways glance that, if it could talk, would say, “Oh, you’ve trained your child to whine for more, have you? Well, I didn’t fall off the turnip truck yesterday, Dearie. You’ve come here to make a meal off these morsels, just admit it.” So to prove those accusations wrong and expand Lily’s repertoire of food she would not scream at me for serving, I would have to make the investment in the 10-pound bag of boneless chicken wings, the 320-count box of taquitos or the drum of hummus. I’d get it home and, of course, Lily would refuse to touch it ever again. So one day, when she begged me to buy the teriyaki chicken bowls after gobbling down a tablespoon-sized sample, I felt like I had to justify my cruel decision to ignore my poor little child’s request for nourishment. “She’ll eat anything from your hands,” I told the sample lady. “But she won’t eat it at home.”

“I can give you some of these little cups to serve it in,” she offered. (She must have been a grandma.)

I walked away chuckling, but when I got home, I cut Lily’s hamburger into tiny pieces and stuck a toothpick in each bite. She was thrilled with the dainties. After that, I served virtually everything with any kind of nutritional value on a stick or in a dixie cup and smiled to myself when she asked for refills of such undesirable dishes as glazed carrots or baked chicken. That phase lasted about six months and then even a toothpick did not provide enough incentive and we had to move on to other gimmicks.

“Wanna play cards?” Lily asks, spooning a bite of tapioca pudding into my mouth.



“Yeah, sure,” I say. “I think I’m done eating, Lily, and I need to use the little girls’ room.” My intestines were starting to cramp and I suddenly had that woozy feeling.

The next thing I remember, I was waking from a dream about Mary, the mother of Jesus. She was sweeping a dirt floor, and she was pregnant. As she worked, she hummed in rhythm with the brush strokes of the broom. As I regained full consciousness, I realized Mary’s humming was actually Lily’s words, muffled by the sheets on top my belly, where she had laid her head. “Hail Mary, hail Mary, hail Mary, hail Mary, hail Mary, hail Mary, hail Mary, hail Mary, hail Mary, hail Mary, Glory Be. Our Father. Hail Mary, hail Mary, hail Mary...” She was moving her fingers along the beads of a Rosary. This is the way Terry had taught Lily to say the Rosary when she was small. Lily was swinging her foot back and forth, scuffing the floor with the sole of her shoe. That is what, in my dream, my brain had turned into the sound of Mary’s sweeping.

One of the nurses explained to me that my blood pressure had dropped and I had passed out. I had dealt with low blood pressure all my life. In my younger years, I could never stand up too quickly unless my ears would ring and a multi-colored snow would fall over my eyes. It had never been a big problem, but it is ultimately what landed me in this place. It only took my passing out once while the stove was on to send Terry on a frenetic search for a nursing home and an attorney to help sign my life over to strangers.

Poor Jim and Terry. It’s hard enough telling an old lady she isn’t fit enough to live in her house anymore. It’s another telling a young woman with Down syndrome that she will have to move out of the family home and start a new life without her mother. Terry had done the research to find a place for me and Jim found a group home for Lily. Everyone cried that day, except for me, because I don’t cry. But if I did, tears would certainly have come. This was the last time I would ever see my home. People who go into nursing homes don’t come out. This, to me, was the end of my life. I had visited enough friends in nursing homes over the years to know that your whole life is reduced to a space the size of yourself when you’re holding your breath. I took nothing with me that couldn’t fit in half of a closet. I took nothing with me of value, not even if it were small enough to fit in half a closet, because it would probably be stolen. All the stuff you’ve accumulated, you watch it all go into the dumpster or into the hands of strangers at a garage sale. Lily wanted to keep everything. Anytime we put something in a box, we’d catch her swiping it back out when no one was watching. She’d say it was the “one thing” she always really loved and she wanted it as a keepsake. We told her she can’t keep everything – only as much as will fit in her five crates. So she’d go rummaging through to take something out so she could fit the new thing she’d fallen in love with all over again after two decades of never noticing it. Fortunately, Terry and Jimmy have a tremendous amount of patience with her. They had taken a week off of work to get us packed and moved. Halfway through the process it was looking like they needed more like a month. How do you disassemble 76 years of life in seven days? By the end, we were just looking for excuses to trash things. “Look, that Renoir has a crack in the corner of the frame. That’s no good. Get rid of it. And look this old Stradivarius has a missing string. Throw it away.” The toughest things were those you couldn’t sell or even give away and you hated to throw away because they had attached themselves to a memory. Like the old Chianti bottles turned candle holders. Each of the children had made one by letting various colors of candles drip down over the bottle. They weren’t works of art, but they represented a rite of passage, because if you were allowed to make one it meant you were trusted to light a match.

Matches and steak knives were big deals in our house. At every birthday we celebrated, Terry would beg me to let her light the candles on the cake. Finally when she was 10, I let her light her own. It was that same year I let her cut a tomato with a steak knife and I taught her to turn on the gas stove. So I asked her one night, “You’re 10 now. Do you think you could live alone if you had to?”

“Sure, I’m independent.”
“Well, you can’t drive. How would you get groceries?”


“Would you be able to take a city bus somewhere?”

“I don’t know. Why are you asking all these questions?”

“Well, I read somewhere that the average person with Down syndrome is about as smart as a 10-year-old, so I was just wondering how independent Lily is going to be when she’s grown up?”

“Well, I’m pretty smart,” Terry said. She really was.

“Could you take a city bus to the mall?” I asked.

“Uh, probably not.” She raised an eyebrow. “But it would be fun to try.”

“Don’t get any ideas,” I said, mussing her hair.


The day the children moved me in here, I had a horrible headache. The place reeked of urine and Pine-Sol. The imagination inside my nostrils told me this, even though I had long ago lost my sense of smell. As Lily led my shuffling feet across the grey linoleum, I remember thinking, this is the only floor I will ever see again. Looking back now, I realize Lily’s hand in mine that day was meant to send a clear message. Terry walked ahead of us and Jimmy behind. Terry was now the leader of the family, Jimmy was backing her up, supporting her decisions from a distance. Lily was right beside me and she would never leave – not of her own will anyway.

I felt like a small child that day. It was on that day, with Lily’s hand in mine, that all the memories of her first day of kindergarten came flooding through. We hadn’t been together for very long, but it was long enough for her not to want to be away from me and placed in the hands of strangers. She covered one eye with each of her two thumbs and buried her face in my spandex stretch slacks when the teacher tried to befriend her. “That’s a beautiful dress, Lily.” Mrs. Ethelbaum stooped to tell her. “Is pink your favorite color?”

I wondered what Lily was afraid of. She looked like a nice enough woman to me. The classroom was bursting with primary colors and pictures of animals drawn in a close-to-cartoon style. The floor-to-ceiling giraffe wore a big letter G around his neck. All the other animals were pretty much to scale, except the ant crawling through the hole in the letter A. He would have been about the size of a gerbil. I pointed the horse out to Lily, remembering that Jen had told me Lily had been on a horse many times. She had taken hippo therapy for a while to improve her balance and coordination. But the drawing of the horse in Mrs. Ethelbaum’s classroom offered nothing to impress Lily and she shook her head and returned her face to my thigh.

I stooped to talk to her, but she closed her eyes. “I’m going to go now for a little while, and you’re going to stay here and have fun with Mrs. Ethelbaum and some new friends, and I’ll be back very soon to get you, OK?”

“No.” She shook her head.

“Mrs. Greeley, nice to meet you.” The woman in a navy blue blazer, pencil skirt and red patent-leather pumps bent slightly at the hip and stretched out her hand. Her voice brought me back to the present – from the aroma of crayons to the imaginary stench of ammonia. She was tall and thin, with dark hair pulled back so tight, it looked as though her smile was permanently stretched onto her face. I reached out my hand and placed it in hers. “I’m Claudia Vasquez.” she said. “I’m the social worker here. You let me know if there is anything you need. I’m here to make sure everything is going smoothly for you.”

“Thank you.” I nodded slightly.

“She nice,” Lily said as Ms. Vasquez made her way down the hall into the administrative office.

A tall and thin young man in a crisp white uniform smiled at us as he pushed an elderly man in a wheelchair past.

“He nice too,” Lily said.

“Yeah, the staff here seems great,” said Terry.

“I love doctors,” Lily said. “I think Daddy is a doctor.”

“Really?” I said. “Did your Mama tell you that?”


“Did your Mama tell you anything about your Daddy?”

“No. But I know everything. He love me from his heart.”

Jimmy sat surveying the ceiling, checking out lighting or the fire sprinklers or the smoke detectors or maybe just checking out. He has done that ever since he was small. Jack and I used to have to talk a combination of Pig Latin and sign language if we wanted to hold a conversation over Terry’s head and she would still figure it out. Jimmy could be in the same room, doing nothing but watching dust dance in a stream of sunlight, and he wouldn’t hear a word. One time Terry came into the room after watching Les Miserables and wanted to know why the innkeeper’s wife had called him an “S-H-I-T,” which, seeing Jimmy in the room, she spelled so he wouldn’t hear the forbidden word. I was livid.

“Terry,” I said. “What grade is Jimmy in?” “Third.”

“Right. And third graders can spell.”

“I’m sorry, Auntie,” she said. “I wasn’t thinking.”

“And what do third grade boys like to do if they hear a word they’re not supposed to say?”

“I don’t know.” Terry shrugged.

“They like to run around the world for the next six months saying it over and over and over again,” I informed her.

“I’m sorry, Auntie.”

Fortunately, this entire conversation transpired unnoticed by Jimmy, including my reaming Terry out through clenched teeth. So we didn’t have to worry about that word making it into his vocabulary and onto a pink slip for another three years.

Join us next Sunday for the next chapter!

"A Novel Gift: Until LIly" by Sherry Boas (CatholicMom.com) Background image via Pexels, CC0 Public Domain.

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