Until Lily, Chapter One
I keep my hair long for one reason only. Lily likes to brush it. But today it was so muggy, I was half considering a trip down the hall to the beauty shop. I can’t stand my hair sticking to my neck, and I can’t put it up, my arms hurt so bad. If it weren’t for Lily, I would have probably succumbed to the Primp and Pamper long ago. There’s something strange about that place, though. Three hours after a woman enters, she emerges arm-in-arm with the hair dresser, who parades her around the nursing home as if she were unveiling an original piece of commissioned art. The hair sculpture is met with polite acclaim from residents and staff, but it is chiefly the same as the last client’s and will be, you can bet, not much different from the next. How could curlers and a backcomb yield such uniform results? Makes you wonder if there isn’t some equivalent to a Jell-O mold for hair. There’s an age at which people expect you to command a certain amount of predictability -- if not obedience -- from your hair. Though I’ve long since passed that age, it’s been three decades since I had a real hair cut. Twice a year, I split my hair down the middle, bring it in front of me and trim the ends back up to my hip bones. I developed this method years ago, as a way of ensuring I never cut too much off. When Lily was little, she liked to play car wash as I tipped my head down and let her run through my hair. She would cackle and rake at her cheeks as if to rid her face of a soapy residue. A bouffant would have zapped a certain measure of joy from that child’s life.
The lobby of the Manor House nursing home is decorated with stars-and-stripes buntings -- the plastic kind you get from MacFrugal’s -- hung from wall-mounted light fixtures resembling upside-down tulips. Red, white and blue streamers are draped too close to the foam ceiling to be truly festive. Couldn’t they have worked a few more feet of crepe paper into the budget? After all, they’re getting good mileage out of the patriotic theme. They put it up for Flag Day in June and leave it through the Fourth of July. The staff here has Lily convinced the decorations are for her. She celebrated her 34th birthday this month. Ever since Lily learned that she was born on the anniversary of the day the Second Continental Congress adopted the flag, she has proclaimed her favorite color to be “red, white and blue.”
“It’s close to 5 o’clock, Bev,” Agnes says. “Why don’t you call her?” Agnes always waits in the lobby with me for Lily to come. She calls her my angel. She honestly believes in such things.
“We’ll give her a few more minutes,” I say. I know Agnes is making the same calculations I am. What would delay Lily by 22 minutes?
Agnes is my best friend. She came just before I did, almost three years ago now. Since we were both new, we found com-mon ground right away in a two-part question: How in the Sam Hill did we end up in this place and how long until they wheel us out of here under a white sheet?
Aside from the seasonal decorations, the place always looks the same, like a Museum for the Slowly Dying. Same poor souls parked in the same spots. Over in the far corner is Buddy. He’s the youngest one here -- probably in his early 40’s. He sits in his wheelchair and glares. I’ve seen neighborhood children come to visit here, handing out candy or homemade cookies or St. Pa-trick’s Day shamrocks cut out of construction paper and generously doused with green glitter. Buddy will reach out and take whatever the child has to offer and never say a word or re-lent from his scowl. They assume he can’t talk, and it’s a good thing he doesn’t, because I’ve heard what comes out of his mouth when he does, and it’s not suitable for small children try-ing to be the bright spot in someone’s day. Not even the meanest nurses here deserve that level of verbal abuse. Well, maybe one of them does. There is a male nurse who will shake Buddy’s bed in the middle of the night just to hear him spout profanities.
I reach for my walker. “I’m going to get my cell phone,” I say to Agnes. Whenever Lily is late, which isn’t very often, I put off calling her because she forgets to carry her cell half the time anyway. If I call and she doesn’t answer, we just end up worry-ing all the harder.
“I’ll wait here for her,” Agnes says. She has taken ownership of my daily visitor. She has none of her own.
A pain shoots from my hip down my leg like an electrical current as I pull myself up. If people rusted, I’d be creaking like an old back-porch glider. I never thought I would get this old or that it would hurt this much. The sterile linoleum hallway lined by handrails, dotted with fake wood doors every five feet, might as well be the route for the Tour de France. Every time I make this journey I wish Lily was here. She walks backwards in front of me, letting my hands press into hers to keep me from falling forward. The walker is OK, but it doesn’t have the sixth sense that Lily does about when to ease up on the pressure against my palms, or when to tighten the grip on my trembling hands. Every time she walks me, I think about when she was little. I had to pull her along everywhere, her arm fully stretched, her hand trapped in mine. By the end of the day, my biceps would ache from the strain of keeping her on my schedule.
“Come on, keep up,” I’d say looking back over my shoulder to find her looking back over hers at some blade of grass grow-ing up through a crack in the sidewalk. She’d heed my urging and walk a little faster for five or ten paces, but then something would catch her attention again. I always wondered why she was never interested in anything in front of her, only things she had already passed -- the wagging tail of a Chihuahua, her reflection in a store window, the shiny tab from a soda can. Even with no distractions, the best she could manage was an apathetic waddle. I think about this often when she’s standing in for my walker and I feel her fleshy hands in mine. Her head is down, watching my feet as if they were cherished children. She looks into my eyes every few steps and flashes me a smile. She has all day to walk me twenty feet. Not because she has nowhere else to go, but because loving me is both journey and destination. Back when I was the able-bodied one, my destination was always the grocery store or the park or the school. Why couldn’t she ever have been my destination? She was more like a nail in my tire. I wish her hand could be little in mine again.
There are a number of things I’d like to do over. Out of the three kids, I always gave Lily the smallest piece or the broken one or the color no one else wanted. I justified it by saying she didn’t care, because most of the time, she seemed not to notice. But I think maybe deep down I resented her for changing my life. Well, I’m not so sure I resented her so much as I did my sis-ter. Every time I’d see Lily fall down or struggle with a button or try to get her point across with a series of grunts and hand mo-tions, the thought would surface, as much as I hated it to. It was my sister’s fault, my sister whom I loved dearly, but who betrayed reason and eventually me.
The solo trek down the hallway is over. I’ve made it to my door without toppling. Monique, my roommate, is sleeping, as she has been for weeks, her mouth a dark cave agape below sharp cheek bones and pointed nose. Her head is tipped back as if she were in a permanent gasp for air. She looks like something from a nightmare you have after eating too many radishes. Her salmon-colored blanket reveals the outline of what looks like the skeleton of a 10-year-old girl.
I shuffle my feet past her to my night stand and open the top drawer to grab my phone. Lily doesn’t answer. I sit on the bed watching Monique sleep. If she weren’t snoring so loudly, I’d swear she was dead. And I doubt anyone would notice. How could a woman named Monique end up this way? Monique is the name of beautiful girls who have to put their dates on electronic calendars to keep them straight. She must have had a handsome, successful husband at one time. He must have bought her fancy clothes and designer fragrances. She must have borne him gorgeous, honor rolled children. But there’s been no sight of anyone, except for a younger sister who comes by once a month and talks over her to the nurse about “how much longer.”
When visitors come calling at the Manor House -- on holi-days, birthdays or odd weekends -- it’s always with that far-off look in their eyes. They are serving their time here. They are ap-peasing their consciences. For mercy’s sake, Josie, the receptionist, should just pass out a form at the door with all the excuses necessary to make a quick exit. Just check one:
___Have to work.
___Have to get Junior to the baseball field.
___Have to get to the grocery store. (No milk in the fridge.)
___Have to do laundry (Underwear drawer empty.)
___Have to mail a package before the post office closes.
___Have to nurse the baby.
___Have to get to sleep early. (Big day tomorrow.)
___Have to let the dog out. (Just got new carpet.)
___Have to let the cat in.
___Have to meet the plumber. (Junior flushed toy truck.)
___Have to get home to spouse. (Wife ovulating.)
I don’t mean to brag, but my visitor doesn’t need a fast-exit form. They practically have to call a bouncer to get Lily to leave. The nurses have actually learned to give her 15, 10 and 5-minute warnings that visiting hours are coming to an end. She would curl up with me in my bed and stay all night if they would let her. Once she asked the nurses if she could spend the night for her birthday. They explained to her that the important men dressed in suits wouldn’t agree to that because she’s not a paid resident. So she reached into her purse and pulled out a five-dollar bill. That made them smile. I’m the envy of this whole place to have someone come visit every day. Most residents have children like my Terry and Jimmy. They’re not selfish or ungrateful kids. They’re just busy. Busy with their children and their jobs. I see them once or twice a year when they fly in to Seattle. Terry is an interior designer in Minneapolis and Jimmy is an engineer in Denver.
My leg begins to tremble and I lift it onto the bed. I stare up at the shelf on the wall opposite my bed where I keep everything that Lily brings me. A cereal box promoting the re-release of Finding Nemo, because that’s a movie we’ve watched together more than three hundred times. A bunch of dried wildflowers she picked from a vacant lot on the way here. A take-out menu from a restaurant where she went on a date, because she wished I could have been there. A small chocolate box from a chocolate factory tour where the participants in her day program went for a field trip. A pink teddy bear wearing a green polka dot party hat. A philodendron she bought at the grocery store where she works. A framed picture of Lily in a blue bathing suit and white swim cap, beaming and holding a bronze medal after competing in Special Olympics. A statue of Mary that Lily had blessed by her favorite priest -- Father Julio, I think it was. On the wall under the shelf, I hang all of Lily’s pencil drawings. Her style has evolved through the years from typical stick figures and circles forming two-dimensional flowers to a primitive folk art depicting wild, running animals. I can only attribute that to the multitude of Wild Kingdom episodes she used to watch with Jimmy. I think Lily’s style is quite irresistible, and I’ve been trying to get her to consider selling her drawings on e-bay, but she insists on giving them away. I think just about every nurse has received an antelope pursued by a lion, signed in the lower right-hand corner with a heart and a lily.
I hear voices coming closer down the hallway. It’s Lily and Agnes. I close my eyes and sigh. They round the door jam, Lily pushing Agnes in her wheelchair.
“I found your angel,” Agnes says.
“Hi, Mommy.” Lily rushes toward me in a quick waddle and gives me a hug and a kiss on the cheek and lays her head on my chest.
“Hi, baby,” I say, laying my shaking arms over her. “I tried to call you. Did you forget your cell phone?”
“I sawry,” she says, looking into my eyes. “I forgot. I lef- the can of corn on my night stand, jus- like Miss Jean say. Be-cause I wanna member something. To get my phone off the charger and put it in my purse. But I
woke up and saw the corn and can- member why I put the corn there. It din’ work, did it?” She lets out a small giggle. A full-blown belly laugh follows.
I chuckle. “I guess not, Lily.”
Most of us would write ourselves a note, but since writing has always been a struggle for Lily, her therapist suggested other ways. On mornings when you have to put the trash out, for in-stance, you put a can of vegetables on your night stand. As soon as you wake up, you see the can and it reminds you you’re supposed to do something out of the ordinary that day. It’s similar to the string around the finger trick, but it works better, because you can eventually grow accustomed to the string and begin to ignore it. It’s hard to ignore vegetables in the bedroom.
“Maybe try peas next time,” I tell Lily.
“No,” she says smirking. “I don’ like peas.”
Lily never would eat anything green. When the kids were little, I used to make them tri-color pasta. All three colors tasted exactly the same, but Lily would eat the orange and yellow and leave the green on her plate. If I could have convinced her it was pasta, it would have been gone in three seconds, but I never could. She would have lived completely on starch and cheese if I would have let her. Well, buttered starch. I can’t tell you how many tantrums were thrown over butter. I learned to let the toast cool to room temperature before buttering it because if the butter melted and she couldn’t see it any more, the whole household paid. Butter had to be in big closely-spaced clumps. Because she was a little on the chubby side and has a small hole in her heart, I was always walking a fine line, trying to get away with as little butter as possible without triggering a meltdown.
“Why are you late, Honey?” I ask.
“Well, work all done, I buy someting, I miss the bus.” She makes a mock sad face.
“What did you buy?”
“No, I can’ tell you,” she smiles wide. “It’s a surprise. For you birtday.”
“My birthday is four months away,” I say.
“It’s a long surprise,” she says grinning. “Something I give you from my heart.”
That’s Lily. Everything happens from her heart.
“I bring something for you, too, Agnes,” she says, bounding to the doorway where Agnes’ chair is parked. Lily gives her a hug.
“Oh, thank you, Angel,” Agnes says kissing her on the fore-head. “I just love you.”
“I love you too, Agnes,” Lily says. On her way back to me, she looks at poor Monique. “Should I get someting for her too?”
“If you’d like,” I say.
“OK. I will,” she says. “Mommy, can I comb your hair?”
“Sure. Can you put it up for me, Honey?”
Agnes excuses herself to go wash up for dinner. Lily combs hair like a neurosurgeon operates, as if tangles were malignant and her efforts could save a life. I never have had that kind of patience for hair. Lily could attest to that if she ever remembered a person’s past transgressions, which she doesn’t. She always had an extremely high threshold for pain. When she was little, she would have blood drawn and never flinch. She’d get a shot and smile at the nurse for putting a Scooby-Doo Band-aid on the injection site. But I would pick up a hairbrush and she’d burst into a red-faced cry, take off running and hurl a variety of household objects in my path. When she’d run out of escape route, she’d wedge her head between the couch cushions and scream.
I remember my uncle, who was a police officer, talking about a phenomenon in law enforcement that often explains the prevalence of police brutality. A perpetrator leads officers on such an intense chase that by the time they catch him, the cops’ adrenalin is pumped so high, they can’t stop themselves from beating the guy senseless, even after he’s splayed out on the ground in a paralyzed surrender.
It was sort of like that at hair-brushing time in our house. By the time I caught Lily, I no longer had the capacity for kind and gentle, patient coaxing. My heart would be pounding so hard, I thought my chest would explode. Maybe my head too. A gar-dener would probably go easier on the hedges than I did on poor Lily’s head. But this brushing thing had turned into a match of wills. If there was a tangle left in her hair after I got through with her, it would have meant that she had won, and I had never been a gracious loser. If I had to put Lily into a half-nelson in order to tie the pretty pink ribbon in her beautiful hair, so be it.
“Almos-’ done, Mommy,” Lily says. “I o-ly have one part lef-. Then do you wanna go ou-side?”
“Oh, I’m so tired today, baby,” I say, trying to pin my shak-ing thumb between my two fingers, so I can remove a hang nail. “Maybe we can try tomorrow.”
“But it so pretty ou-side,” she pleads. “I get the chair.”
“Why is it pretty?”
“Nice and warm. And the flowers,” she says, erupting into a smile. “Make my heart happy. I wanna pick some for you.”
“Well, we can’t pick those, you know,” I say, just in case she needs reminding. “Someone planted them.”
“I know. I know.” Lily’s hands are damp and rubbery on my hairline as she meticulously gathers all the stray hairs off my face. “Thish ish going to be pretty pony tail.” She holds the elas-tic band in her teeth as she speaks. As if it isn’t already hard enough to understand her. “Can I go ask for the wheelchair? Or you walk?”
“I can’t walk today, Lily,” I say. “Get the chair, and I’ll sit on my crazy hands.” There are times when sitting on them to keep them still is my only relief. There are other times when sitting on them hurts too much.
Lily’s smile grows wide at the thought of pushing me around the grounds. She’s already in the hallway when she re-members to poke her head back through the doorway and say, “I be righ- back.” You typically only see that kind of enthusiasm when you tell a kid she’s going to Disney Land. For Lily, Dis-ney-caliber elation occurs seven or eight times a day. I wonder what it would be like to feel life to that depth. What if that’s the way we’re all supposed to be made and it’s the rest of us with the disability? Not so very long ago, I would have dismissed that thought as ridiculous. Thirty-five years ago, I would have considered it insane.
Jack and I had just turned on the TV to watch the ball drop on Times Square, as we had done on all our fifteen New Year’s Eves together, except for the one when Jack rented a Lincoln town car and drove me to the Crowne Plaza Hotel. He had sold so many insurance policies that year that his boss booked him a room on the 29th floor, and we watched the Space Needle’s midnight fireworks display from our bed while drinking Cham-paign on 1,000 thread-count sateen. We had a bit too much to do that night to turn on the TV. But that was not our most extraor-dinary New Year’s Eve. That one would come several years later, when we were sitting on separate recliners, wearing shear-ling slippers, drinking Heineken beers, eating cold cuts and watching strangers make fools of themselves on national televi-sion. In some respects, it was almost as fun as the Crowne Plaza, and we both knew that sometime before 12:15, we would pop down our foot rests, walk down the hall, shed our flannel and slip into bed together to make predictably satisfying love. The telephone rang just as I was taking the first bite out of a Salami and Provolone sandwich. FOX had gone to a Coca-Cola com-mercial and Jack had gone to the bathroom. It was my sister Jen, calling to wish us Happy New Year and tell us she’s pregnant.
“Uh-huh,” she said. “You heard me.”
“Well, congratulations.” I was a little unsure what to say to a single, 39-year-old pregnant woman. I thought maybe congra-tulations weren’t so crazy considering she had adopted two other children.
“It’s not good, Bev,” she said.
“What do you mean not good?”
“The baby has Down Syndrome.”
“Oh, I’m sorry Jenny girl,” I said. “You must be devas-tated.”
A large quantity of exhaled air whistled through the tele-phone line. “I just really don’t know how I’m going to manage it all. I mean it’s already hard enough.”
Jen’s adopted children were a handful. They didn’t have visible disabilities, but they had come from rough beginnings.
“It’ll be OK, Jen,” I said. “I’ll fly out and take care of Terry and Jimmy. I can get away from the store for a few days.”
“I’m not really worried about delivery day, Bev,” Jen said. “I’m worried about the next 50 years.”
“Oh.” I know this was the longest silence that had ever passed between us. But I didn’t know how to clarify what I thought I was hearing. Finally I just had to put it out there. “You’re going to have the baby.”
“Well, yeah.” As if this was a no-brainer.
“You know, most people wouldn’t, Jen,” I said. “The baby is not right.”
“Bev, you know we weren’t raised like that.” Here we go with the religion stuff. We weren’t exactly raised to conceive while unmarried either.
“How far along are you?” I asked. I wondered how much time I had to try to change her mind.
As soon as I got off the phone, I went on-line and learned that at fourteen weeks, the fetus is only three inches long and weighs only an ounce. What exactly was my sister trying to save? I also found in my research that 90 percent of Down Syn-drome fetuses are aborted. Armed with this enlightening knowledge, I crafted all my subsequent e-mails for the next sev-eral weeks to focus on the humanity of the choice to terminate. All the medical problems, suffering the child would endure, struggling through life’s simplest tasks, rejection, low self es-teem, isolation, and the straight-out sadness at being different. I had formulated a theory, which I only hinted at, that the reason Jen was going through with this was not for the sake of the child, but because she herself wanted so badly to be pregnant. Hers was a kind of selfishness, veiled in faux morality.
When we were little kids, Jen was always pretending to be pregnant. We saw a neighbor of ours in like her eighth month, and our mother explained to us that there was a baby growing inside her tummy, and Jen just thought that was the most intri-guing thing. She’d get one of Dad's big T-shirts and put it on and stuff a pillow under it and look at herself in the mirror sideways, then front ways, then sideways again. Whenever we’d play house, she'd be the mom with one baby and one on the way. I’m sure she studied Mrs. Crenshaw next door to see how she walked and sat and got up. She did everything just like her. Me, I was never interested in being pregnant or even the Mom. I always wanted to be the teenage babysitter, who talked on the phone to her boyfriend while watching the latest videos on MTV.
Lily has walked me out to the courtyard. We sit in the shade under the trellis of grapevines, so thick after 22 years since the Manor House opened, that the birds nest there. Lily deals the cards, while my hands fumble to collect them into a pile. Lily fixes hers into a tidy deck and then reaches for mine, to save me the frustration. My long slender fingers, not so long ago able and agile, now are gawky and warped like the witch’s from the Wi-zard of Oz. Lily’s fingers are still stubby -- just a larger version of the ones she must have been born with. But I marvel at how well they work. Fifteen years of occupational therapy did its service.
“You first, Mommy,” Lily says placing her hand on top of her deck. When playing War, two players can technically go at the same time, but Lily doesn’t like to play that way. She likes to prolong the suspense by having the other player put a card down first. She gets a sheepish grin on her face before she reveals her card, as if there were some sort of strategy to the game, which requires only that you, by luck of the draw, play the highest card in order to capture your opponent’s.
A seven and a Jack.
“Hu-ha!” Lily shouts, swooping the two cards toward her. “I win that one.”
I had learned, with shaking hands, how to flick the cards onto the table so they would land face side up.
“I win again!” Lily says.
She gathers the cards in like a miser, biting her bottom lip into an endearing grin. Then she looks into my face. “Don- wor-ry, Mommy. You can still win.”
“Who shuffled these cards, anyway?” I ask feigning indig-nation.
“Here, you have this one,” she says, pushing the cards to-ward me.
“No, remember Ace is high.” My hands tremble the cards in Lily’s direction.
“No, it’s OK, Mommy.” She pushes the cards back toward me. “You don’t have any.”
“Hey, I don’t want any pity points,” I tell her. “My luck just hasn’t kicked in yet. I’m going to kick your butt.”
Lily bursts into a giggle. Any sentence with the word “butt” gets an automatic laugh. When we were teaching Lily her alpha-bet, the kids and I used to play this game where we would sit in a circle and toss a ball to each other. The person who caught the ball would have to come up with a word that started with the next letter in the alphabet. Terry and Jimmy would always jockey for the position that would make them the second one to go, so they could say “B” is for butt. Everyone would roll around laughing, no matter how many times we played the game. It never got old. As for myself, I only rarely used the word. I re-served it for times when someone was seriously upset or injured. I wonder if Terry and Jimmy ever use it for comedy relief with their kids.
“Your turn, Mommy.” Lily says.
“Oh, I’m sorry, Lil.” I watch my first two fingers fumble with the top card of my deck until my thumb decides to cooperate.
“Ha! Told ya!” I spank my hands down on the cards that had won me a round.
“Yay, you got one,” Lily cheers.
Lily doesn’t like to lose, but she doesn’t like to win, either. That’s something I learned quite a few years ago when she com-peted in the Special Olympics. Lily was really a good swimmer. As good, if not better, than many people without disabilities. She was the favorite going into the race, but people underestimated her generosity. Whenever she’d get too far ahead of the other swimmers, she’d slow down and wait for them. You don’t win any gold medals that way, but you do win hearts. People crowded around to congratulate her after the race for a true vic-tory -- one of solidarity with her fellow athletes.
“Can we play this again tomorrow?” Lily asks, laying her head on the table to get a better look at the height of the stack of cards she has won.
“Sure,” I say.
“Can we play every day?”
“Forever and ever? I love this game. It my favorite.”
“You should teach your friends to play it, so you will always have someone to play with.”
“Oh, no. I only play with you.” She drums her first and second fingers on her stack of cards in an off-beat rhythm. “No one can do it. Jus’ you. I won- play if you won- play. I won- play anything.”
“What about a boyfriend? Would you play War with a boy-friend?”
Lily stops drumming and flashes a bashful smile. “Oh, no. I don- have one of those.”
“But you may someday.”
“And we can get marry?”
“And have seven babies.”
“Wow. That’s a lot of babies.”
“An- he be the Daddy and I be the Mommy.”
“I love daddies.”
“I wanna see my Daddy. Where my Daddy?”
“You mean Jack? He’s in Heaven, remember?”
“No, the Daddy with the puppy. An- where the puppy?”
“I saw a picture long time ago. There was me and a puppy. The Daddy bring the puppy.”
I don’t have the heart to tell Lily that her mother instructed me thirty years ago never to contact Lily’s birth father, for reasons that have remained mysterious and, to me, somewhat sad. I would love for Lily to have the Daddy she has always wanted. I have been so often tempted to betray my promise to my sister and track Lily’s father down. Now, with my failing health, a be-trayal makes more sense than ever. Lily needs someplace to deposit all that unbounded love. Someplace besides me. I’m afraid I won’t be around too much longer.