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I usually try to be dressed and sitting when Lily comes to visit because I don’t want her to worry. Plus, she typically goes to work right away on my hair. But on this particular day, I don’t know if it was the new medication or a chemical imbalance, or just the release of pent up sorrow that had been stored over the decades in a reservoir of tears. But it must have been a shock for Lily to come in and find me lying in bed sobbing.
“Mommy, what wrong?” She held my head in her lap and stroked my hair. “Tell me what the matter.”
“It’s nothing, Honey.”
“Please, Mommy. Tell me.”
I struggle to lift my head and bring my hand to my face so I can wipe my wet cheeks. “I’m OK,” I say.
I don’t know what to tell her. There are so many things that are the matter. In fact, I can’t think of one thing that isn’t all wrong. This place, this body, this mind, the past, the future, the here and now. It is all so horrible. And nothing about any of it is ever going to change. Not for the better anyway. Tears have never come easily for me. I’ve always envied people who can have a good cry. Like Jack. We used to go to movies and he’d be sniffing and wiping his eyes with the knuckles of his forefinger, and I’d be sitting there fully absorbed in the plot thinking “how sad.” I’d end up nauseated, but not in tears. My stomach takes the brunt of my heartaches. How I’ve avoided ulcers all my life I’ll never know.
“Do you muscle hurt?” Lily asks.
“Do you wan- me to rub you back?”
“That’s OK,” I say. “Can you just pass me another tissue?”
She gives me the box. “Hey, do you wanna watch Gilligan Island? I think it on.”
“Yeah, yeah,” I say, blowing my nose. “That would be good.”
As I watch the Professor try to cure the Skipper’s amnesia through hypnosis, I wish that I could be struck with memory loss. I wish I could forget everything except who Lily is. I miss Terry and Jimmy. I miss Jen. I even miss Jack.
I want to have just one more conversation with Jen. Maybe she was right, and there is a Heaven, and I will be able to tell her all the things I was wrong about. That probably doesn’t sound much like Heaven to most people, but there is one thing in particular I need to talk to her about. I want to get down on my knees, put the back of her hand to my forehead and weep. If it wasn’t for Jen, I would be completely alone right now. If there is such a thing as angels, I have inherited one. I did nothing to deserve her. I said everything I could to destroy her. And yet, here she is, washing my face with a warm cloth while her favorite show plays behind her. She doesn’t know – and never will – how much I didn’t want her. She is so full of goodness, she could never comprehend that kind of inhumanity. I wish I could do something to make up for it. I wish I had the opportunity to rush into a burning building to save her. Or give her my lungs or something.
On this night, Lily doesn’t try to trick me into eating. She just sets down the fork when I say no thank you. Then she walks the tray down the hall, as she always does, to the nurses’ station where all the plates with half-eaten dinner rolls, untouched domes of mashed potatoes, wadded napkins smeared with fuchsia lipstick and flexi-straw wrappers are piled on a rolling cart. Lily returns to my room with a large grin and two sticks of cinnamon Trident. She has a gum supplier at the nurses’ station and she’s on shift this evening.
“For after I brush your teeth,” she says, with the same enthusiasm as if she’d just procured a $299 bottle of Astralis wine.
“Oh, Lily,” I say, “you never forget my teeth, do you, Love?”
“You know what they say,” she says. “Ignore your teeth and they go away.”
Lily tells that joke nearly every day. I read it on a poster at our dentist’s office when she was about 12 and I drew her attention to it. She thought it was the funniest thing.
Lily routes around the bathroom drawer for my toothbrush and the Crest without looking. She’s smiling at herself in the mirror. She has done that ever since I’ve known her. She has always loved cute – dolls, real babies, puppies. Her own face.
“OK, open up,” she says, still screwing the cap back on the toothpaste.
“You remember, Lily, when you used to give me such terrible fits about brushing your teeth?” She scrubs away at my molars and gives me a cup to rinse and spit. “You would chomp down on the toothbrush so hard, I couldn’t budge it to save my life.”
“I’m sorry, Mama,” she says, but her sheepish smile tells me she isn’t. “I let you brush them now.” She holds the toothbrush out to me and opens her mouth wide.
“Oh, Lily, that’s gross.” I grab the toothbrush from her and toss it back in the drawer.
I always marveled at Lily’s sense of humor. There’s a level of sophistication about it that blindsides me just about every time I witness it. But she always did love to laugh. I knew early on that Lily was sharp in her own way because she understood irony. One time, when she was about nine, I was reading her one of her favorite Curious George books. The mother duck was followed by four yellow baby ducks. Lily was going through a phase where she named everything after her family members. She pointed to the first duck and called it Terry, the second was Jimmy, the third was Lily. So I said, “And what about this little fellow. Is that Sunset?”
She burst out laughing. “No, that a duck, not a cat!” she exclaimed. She saw no problem with humans being ducklings, but a cat couldn’t be a duck.
I watch Maria stretch the compression sock over my foot, swollen like a bratwurst. She folds it like an accordion and inches it up my leg. I search her face for signs of struggle, but there are none. She is my favorite nurse, by far. Always maintains a sweet smile while taking care of her patients, and in their moments of agony, her eyes, locked on theirs, reflect a small part of their suffering. She wears an oval medal close to her neck. I know it is a saint medal of some sort, but I can’t see well enough to make out any detail. I sometimes want to ask her about it, but I don’t want to open up any doors to a theological discussion.
“OK, Bev, how does that feel?” she asks, looking up into my eyes, my foot still resting in her lap.
“Fine, Honey. Fine.”
“Good,” she says, patting the top of my foot gently. “Let’s get the other one on.”
As she lifts my other foot onto her lap, I see a much older hand clenched around a much smaller foot. My mind is back to a Sunday when Lily was six. Terry had been begging all week to go to church and I was a little perturbed that I had to get everybody ready. It was a muggy summer morning. I was having hot flashes and I resented having to wear pantyhose on a weekend. Now I can’t imagine a foot less convenient than Lily’s. It was wide and short and the front toe was spread way apart from the rest, as if there was a sixth toe missing in between. Her physical therapist used to call them tree-climbing toes. And they would have worked fine for that, but she was not a monkey, and therefore had to wear shoes to church. The problem was, whenever you try to slide a sock onto such a foot, the big toe catches in it, adding an extra 15 or 20 seconds to the process. And on this particular day, that small thing seemed like a big issue to me. As I went to put her shoe on, it became apparent, after all that struggling with the sock, that I hadn’t been successful in getting the sock in place and it started to bunch up inside the shoe. I knew that would mean trouble, since Lily hated that feeling. So I decided to avert a disaster and take the shoe off and try to straighten the sock. Well, that sock was stretched onto her chubby foot so tight, that in trying to get a grip on it, my index fingernail snapped. Without even knowing I was going to say it, I muttered under my breath, “I hate getting you ready.” After I said it, I wished I hadn’t, but I took momentary comfort in the thought that she probably wouldn’t notice or really understand what I had said.
As I struggled to get her shoe back on, I looked up and saw tears in her eyes. Her bottom lip was pushed out as she stared down at the ground. “I’m sorry, Lily,” I said, kissing her. “I’m sorry. I love you.” From that moment forward, whenever I helped her get dressed, Lily kissed me on the top of the head or grabbed my hand and planted a kiss on it.
Maria gently squeezes my foot, and the gray, bland present takes possession once again of my thoughts.
“OK, all set,” she says. “Do you need anything else right now, Bev?”
“Oh, Maria,” I say, shaking my head. “I don’t know where you get your patience.”
She puts her arm on my shoulder. Her medal dangles gracefully with the angle of her body. “It’s easy with people like you,” she says.
People like you. Not all the nurses would refer to us as that way. There have been times when I’ve been wiped so hard, I know the person wiping has no inkling that there is a human being inside this soiled skin. And I know there were times when I did the same to Lily. The stress of the entire day would converge like a vortex over her and let loose its force on what I saw was her refusal to take time to use the toilet. I can just imagine what she saw as she looked into my face, twisted with disgust at her inability to do what all normal children can do. I can imagine it because I’ve seen it on a number of faces here. Maria, on the other hand, seems to understand the dignity of a human being, even an incontinent one.
“My grandchildren are coming to visit,” I tell her as she wraps the blood pressure cuff around my arm.
“Oh, really?” she smiles. “When?”
We’re both quiet while she listens to the beat of my pulse. Then she lets the air out of the cuff and says, “I didn’t know you had grandchildren.”
“These are Terry’s kids,” I say. “She’s bringing her family out for summer vacation.” Terry and I need to talk about Lily’s future – what’s going to happen after I pass on.
“Oh, how nice.” Maria says, unwrapping the cuff. “How old are they?”
“Nine, 11 and 14. I have two more too. My son Jimmy’s kids. They’re six and four.” I’m not sure whether to mention the one on the way.
“Well, I can’t wait to meet them,” she says, writing on my chart. “I have a two-year-old nephew, and I just adore him. He’s my big brother’s baby.”
“I never thought Jimmy would ever settle down,” I say. “He liked to travel and have fun with his friends. And the girls too, I think. But I guess he found one that was too irresistible.” My voice sounds garbled and faint inside my own ears and I wonder if Maria knows what I’m saying.
“He’s a wonderful father.”
“Oh, that’s great.” She picks up the small potted plant on my night stand. “Do you want me to give this plant some water?”
“Sure, thank you.” I try to wipe a stray strand of hair off my forehead, but my trembling hand keeps missing. “You’re not married?”
“No.” Maria wipes away the hair for me before she takes the plant to the sink. Her hand feels soft and warm on my forehead. She looks to be in her mid-20’s, but she has an uncommon wisdom about her. Her face is fresh and flawless, like someone who’s never even been glanced at by evil. “It’s hard to find the right person these days. I guess I’m pretty choosy.”
“Well, you can afford to be,” I say. “You’re such a lovely girl, with such a good heart. We can sense that, and we appreciate it. We don’t always get treated so well.”
“Oh, I’m sorry.” She folds a paper towel and places it on the fake wood night stand to catch the possible drips from the plant. “You should always be treated well.”
“Well, we patients aren’t always a bed of roses either,” I say. “I can’t tell you how often things come out of my mouth and I’m listening to myself say them and thinking, 'Is that really me acting this way?’”
“Well, it’s understandable when you’re in pain,” she says. Her eyelashes are the longest and straightest I’ve ever seen. “I hope I will have as much grace under fire as I see around here.”
She reaches behind me to adjust my pillows. Her medal is almost close enough for me to make out some detail. I would have guessed the patron saint of nurses or somebody like that, but it looks like a man.
“Do you need anything else, Bev?”
I don’t, but I dread being alone, so I figure I’ll keep the conversation going and if it gets too heavy, I’ll just tell her I’m tired.
“Who’s on your medal?” I ask.
Maria grasps it between her first finger and thumb and smiles. “Oh, it’s John Paul II the Great.”
“Oh, I remember him,” I say. “You’re too young, but I remember him well.”
“He had Parkinson’s.”
"Uhuh,” I say. “It was a big deal when he died. Millions and millions of people came to the funeral. I watched it on TV. There were people from all walks of life there. All religions.”
“I heard somewhere, and I don’t know if it’s true, that he was the first pope in history to allow himself to be photographed while ill,” she says.
“Yeah, I guess he wanted to show that suffering and dying is part of life. Just another step in the journey towards heaven.”
The journey? I never considered myself on any kind of journey. My life felt more like an un-journey, like there was absolutely no destination and if there ever was, I had already arrived some time ago at this mire of stagnant misery. But if Maria is right, and I really am on a journey, my passport has long ago expired.
“And why are you wearing his medal?” I ask.
“Well, you might think it sounds a bit crazy, but I pretty much talk to him all day long,” she says.
“Talk to him about what?”
“My patients,” she says, nonchalantly. “I ask him to intercede for them. To help them.”
Coming from anyone else, it would have sounded crazy. But Maria is the kind of soul that can make you think something as beautiful as that could really be true.
“Oh, Honey, I wish I had that kind of faith,” I say.
She smiles and fixes my pillow once more. “You rest now, OK? I’ve got to go check on Richard and Lisa.”
Maria’s on shift in my wing again, for the third day in a row. The world is a little brighter this week. She tells me as she exits after my meds that she downloaded something for me on my audio Kindle. It’s an old New York Times article about John Paul II’s beatification. Since I watched the news every day before the kids came to live with me, I had a vague memory of the story. I remember it had something to do with handwriting and a French nun.
I listen to the kindle quoting excerpts of the nun’s testimony in which she describes how she was being ravaged by Parkinson’s Disease to the point of being unable to write. The month after John Paul II died, the nun’s congregation began to pray for the pope’s intercession, because he had also suffered from the disease. One day, the mother superior asked the nun to write John Paul II’s name on a piece of paper, but the name was illegible. The nun retired to her room that night and felt compelled to pick up a pen again. This time, the writing was clear. The next morning, she awoke without pain and attended Mass. Upon emerging from the church, she was convinced she was cured. A neurologist who had been treating her for some four years concurred.
I go to close the Kindle and notice an envelope stuck in the inside pocket of the cover. I open it and find a John Paul II medal. I smile at Maria’s goodness and feel a little guilty that she probably assumes I’m a fellow believer, based on my Mass attendance and the statue of Mary that sits on my shelf, complements of my Lily.
I let Lily rope me into going to the Mass offered here every week. It’s the easiest way for her to get to Church, and I don’t mind going. I’ve always told people I lost my faith in college. Because I had moved away from home, my parents were no longer in charge of making sure I got to Mass. I just found it dull and unnecessary to set my alarm on Sunday morning after partying so late on Saturday night. That excuse, however, does not take into account Saturday evening Masses or even the one that was offered on campus as late as 9 p.m. Sunday. The real reason was the church’s teachings did not support my view of morality. I saw nothing wrong with premarital sex and didn’t want to remain intellectually dishonest by attending a church that did. I had friends who didn’t have that problem. They would do whatever they felt like doing with whomever they felt like doing it on Saturday night and wind up in the Communion line on Sunday. I guess I’m simpler than that. I don’t like being conflicted. I didn’t want the church to tell me I was losing my salvation, so I opted to believe there is no salvation. It’s just that now that death is so close, I’m not sure I like that theory so much anymore. Worst case scenario, I’m wasting an hour a week going to Mass. I’ve got nothing but time and nothing but misery to fill it, except the time I spend with Lily.
Sometimes when those automatic doors of the Manor House lobby open and Lily comes waddling through with her big smile, it hits me. One change in any variable and I would have nobody. If Jen had never met Lily’s father. If Jen had taken all the advice about her pregnancy. If Jen had married Lily’s father. If Lily’s father had fought for custody. If Lily’s father were to walk through that door right now and whisk her away.
Most of these “ifs” nauseate me. That last one scares me to death.
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Copyright 2017 Sherry Boas
About the Author
Sherry Boas is author of the Lily Series, which has grown into a beloved collection of novels whose characters’ lives are unpredictably transformed by a woman with Down syndrome. The former newspaper reporter and special needs adoptive mother of four is also author of A Mother's Bouquet: Rosary Meditations for Moms, Billowtail, Victoria's Sparrows, Little Maximus Myers, Archangela's Horse, and Wing Tip. She runs Caritas Press from her home office in stolen moments between over-cooking the pasta and forgetting to dust the chandelier. Find her work at CaritasPress.org.