by Amy Hatvany
• • •
For six years after Jenny first began to show signs of her disabilities, our mother took her to an unending line of specialists, neurologists, and pediatricians who had nothing to give us but more forecasts of my sister’s impending death. “If I were you,” one had actually said, “I’d want to get some tests done to find out if she’s playing with all her marbles.” But despite the negativity she encountered, my mother led a determined search for the name of the monster who had invaded our lives. More than once, we had been told Jenny could die any day.
“She’s regressing,” several specialists concluded. “More likely than not, she’ll continue to regress until her brain simply stops functioning. You should prepare yourself for losing her.” Not one of them could tell us why this was happening. Not one of them could give it a name.
My mother came home from these appointments tearful and depressed, often locking herself away in my parents’ bedroom for hours, leaving me to care for Jenny. I did my best to entertain my sister; she loved to watch me make silly faces and sometimes even attempted to mimic my expressions. At three, she had begun to look us in the eye again, an occurrence my mother took as a sign of her ability to be healed. Anything could be a sign: a smile, a laugh, a particular movement of Jenny’s hand. My mother interpreted them all as proof that her daughter was simply ill, not permanently damaged. Back then her hope was a bright thing, sometimes dulled, but always burning.
But the professionals she consulted provided little encouragement. So when Jenny was nine, Mom decided to look away from medicine and into the spiritual world for answers. There was a healer, a supposed miracle-creating interpreter of languages unheard by the rest of us. Mom found out about her from a friend who swore the woman was God’s unnamed daughter. “She knew things about my life I’ve only prayed about,” the friend said. “You have to take Jenny to see her.”
My mother made the appointment. She didn’t tell my father, sure he would only scoff at the waste of time. She did, however, insist that I come with them; if the healer said or did something worthwhile, I could back her up when she told Dad about it.
“But I don’t want to go,” I had whined when she told me of the appointment. It was the summer I turned twelve, and the days were hot. My best friend, Nova, and I were spending as much time as possible at Colman Pool in Lincoln Park, practicing our high dives and giggling over the boys in their wet swim trunks.
Helping my mother take care of Jenny at home was one thing, but going out in public with them had become another. I was easily embarrassed, painfully vulnerable to every sidelong glance sent our way, every whisper of a child who asked his mother, “What’s wrong with that girl?” I had learned that the safest response to these situations was to ignore them. Too many times I had watched as my mother attempted to introduce Jenny to an inquisitive child only to have that child’s mother yank him out of Jenny’s reach, as though her disabilities were a virus that might be caught.
This was not the sole lesson I learned about life as the sister of a retarded child. Unwilling student that I was, I learned that no matter how many times my parents tried to convince me differently, I always came second. By simple necessity, Jenny’s needs were foremost, pushing me into the role of less important child even when I had accomplished the most. My straight A’s won a quick smile; Jenny’s managing to get a spoon to her mouth won her an hour of cooing and congratulations. This realization forced me into a subconscious hyperachievement drive, compelled to be more, do more, as though it were my task in life to make up for my sister’s disabilities.
Not wanting to give my mother more than she already had to handle, I rarely misbehaved. I struggled to match Jenny’s angelic demeanor, though on some level I sensed I would always fall short; I would always be the imperfect daughter. And since Jenny didn’t have the capacity to misbehave, the standard I set for myself was completely unreachable. Still, I reined in my rebellion as best I could, the ache I felt for normalcy binding me like a too-tight blanket.
But that morning, of all the lessons I had learned, duty to my sister spoke the loudest. As my mother got Jenny dressed, skillfully sliding her daughter’s stiff limbs into a calico sunsuit, she looked at me, her eyes hard at my reluctance to accompany her. “I don’t care if you don’t want to go. Take that bathing suit off and get your clothes on.”
“But Nova and Star are supposed to pick me up in fifteen minutes…. ” Star was Nova’s mother, and her father was Orion; a couple of hippies who had met and married in a commune, they had stuck with the celestial theme in naming their only child.
“Nicole Hunter!” my mother snapped. “Get dressed. Now. Call Nova and tell her you have something else to do today and you’ll go to the pool tomorrow.”
I looked at the floor, scowling, scuffing my bare foot against the carpet.
“Did you hear me, young lady?”
Jenny was silent, her eyes large and liquid, looking at me, not blinking. Please, I heard her say, so I twirled around and stomped out of the room. I called Nova from the phone in the hallway.
She was disappointed. “But why can’t you come? What am I going to do all day without you? Who’s going to put baby oil on my back?” Both pale-skinned with a tendency toward wild freckling, Nova and I approached tanning with scientific vigor. I knew her shining, sandy blond waves would look better next to a Coppertone tan than my red mess of corkscrew curls, but since she was my best friend, I tried not to hold it against her.
“My mom is making me go with her to some stupid appointment for Jenny.” Nova was the only friend I ever felt comfortable bringing around Jenny, the only friend who embraced my sister as special, hugging her, wiping away her drool, and singing her the “Alphabet Song” in a Cookie Monster voice. Jenny, in turn, adored Nova, lighting up whenever my friend appeared. I raised my voice so my mother would be sure to hear how angry I was with her. “She’s so dumb.”
My mother called out from Jenny’s room. “Watch it, kiddo. Keep it up and the pool is off-limits for the rest of the week!”
I spit air out of my mouth like it had a bad taste. After telling Nova I’d talk to her later, I got dressed and we left. I kept silent for the entire drive, staring out the backseat window as we headed through our local shopping district, the West Seattle Junction, and up Thirty-fifth Avenue toward White Center. When we pulled up in front of a beaten-down brown house with a rotten-looking roof and sagging front porch, I finally spoke. “This place is a dump.”
My mother whipped around to look at me, her hands still gripping the steering wheel, her knuckles white. “That is a terrible thing to say. Maybe it’s all she can afford.”
I crossed my arms over my budding chest. “Then she’s probably not that good. If she was, she’d make more money and live in a mansion on Lake Washington.”
“Get out of the car, Nicky.”
With one of us on either side of Jenny, we gingerly led her up the front steps, careful to avoid the soft-looking spots of wood. A small handwritten sign hung in the window next to the door; it read SONIA SMITH, PSYCHIC HEALER. I rolled my eyes.
Before we had a chance to knock, a woman came to the door. At a little over five feet tall, she was small-boned, petite enough to appear childlike. Her black, straight hair fell to the middle of her back. Her skin was pale, her eyes piercingly gray. She wore a purple robe with a hood, its hem edged in gold rope. “Welcome, you must be Jenny,” she said to my sister, her voice low and melodic; then she paused. “Yes, I’ve been waiting to meet you, too,” she continued as though my sister had spoken to her.
I snorted at this, but when she directed her eyes at me, I shivered. “Hello, Nicole. Your mother told me you’d be coming. I’m so happy to meet you all. Come in, please.” She gestured with her winglike arm for us to enter the small living room.
The space was dimly lit; heavy velvet curtains hung over the windows, blocking out the bright morning sun. Sweetly scented candles burned in several corners of the room, and dark tapestries de
picting scenes from the Bible insufficiently covered cracked plaster walls. Sonia motioned us to the large couch by the door while she sat opposite in a deep, comfortable reading chair. There was a short wood table between us, lined with a pretty piece of burgundy fabric, candles, and an ornate deck of cards. She folded her hands gracefully in her lap.
“What can I help you with, Joyce?” She addressed my mother.
“Well,” my mother said nervously, her fingers busily fiddling with the straps of her purse, “like I said on the phone, we want to know what’s wrong with Jenny. The doctors can’t—” She swallowed; I watched her voice box bob up and down her slender neck. “They say she’s as good as dead already … ,” she whispered, her voice faltering as she lowered her chin to her chest. “I—”
Sonia reached out for her hand and squeezed it. “I understand. You want to know if the disease that grips your child’s mind is hopeless. If it can be named, it might be healed.”
My mother nodded once and whispered, “Yes.”
Then Sonia looked at me. “And you, Nicole—what do you want to know?”
I froze, then shrugged my indifference.
“Nothing?” Sonia smiled, her eyes twinkling. “Well, we’ll see if there’s anything your sister wants to tell you.”
“She already tells me things,” I shot back at her, my eyes narrowed. “We don’t need you for that.”
“Nicole!” my mother exclaimed.
Sonia’s arched eyebrows rose to the middle of her forehead, tiny black birds about to take flight. “It’s all right, Joyce. We’ll just see what happens, then, shall we?” She reached out to hold Jenny’s hands in her own. After she closed her eyes, her lips began to move silently, her head wobbling in short nods, forward and back.
Jenny was quiet, staring at this woman intently. When Sonia opened her eyes, she bore her gaze into Jenny, completely focused on my sister’s face. It seemed every muscle on Sonia’s face was still; she didn’t blink, her nose didn’t wiggle, and her mouth stayed slightly open. Jenny was motionless as well, her blue eyes as open and accepting as I had ever seen them. The only sound was the breath moving in and out of their bodies in perfect synchronicity. A translucent energy flowed between them; I was sure that if I reached out my hand I could touch it.
My mother sat on the other side of Jenny, leaning forward. She looked anxious; I could not tell if she sensed the same connection between Sonia and Jenny that I did.
Sonia still did not speak, but continued to hold Jenny’s hands, pulling them to her small chest and cradling them there like a child. This went on for several minutes; my muscles began to twitch from sitting so still. I felt invisible, as though I were intruding on some incredibly private moment. My eyes ached from focusing so intently on their interaction. Then, out of the silence, a giggle erupted from my sister, the sound of tinkling bells, happy and pure. Sonia laughed, too, finally releasing Jenny’s hands and leaning back into her chair.
My mother looked awkwardly around the room. “Umm …?”
Sonia smiled at us. “There is a name for your daughter’s disease, Joyce, but she does not know it. She wants you to know she is happy.”
“But can you heal her? Can you make her well?”
Sonia shook her head. “She’s not meant to get well. But she’s not going to die soon, either. Jenny is who she is supposed to be. She’s who God created her to be. She is His gift to you.”
My mother was silent, her hands folded tightly together as though in prayer. Disappointment radiated from her body like steam from wet pavement. “How much do we owe you?” she asked finally, her voice flat.
“I accept donations only. Whatever you feel is appropriate.”
My mother reached into her purse and slid out a dollar bill, carefully laying it flat on the table. “Ten cents a minute,” she whispered. “Better rates than the phone company. Pretty good racket you’ve got going here.” She stood, pulling Jenny with her, and looked above my head at some unseen point. “Let’s go, Nicole.”
Sonia watched us move to the door from her chair. “I’m sorry you’re disappointed, Joyce. I did tell you how unlikely it was that Jenny could be healed. She needs your acceptance, not a cure.”
My mother shot her next words at Sonia. “Don’t tell me what my daughter needs.”
We left, and it was my mother’s turn to be silent on the drive home. Tears escaped the corners of her eyes, and she angrily wiped them away as fast as they appeared. I sat with Jenny in the backseat, holding her hand. My sister smiled a secret smile, humming and moaning happily to herself. I felt my mother’s pain but could not help thinking that Sonia had gotten it right. Jenny was exactly who she was supposed to be. It wasn’t our job to fix her. But my mother’s life was anchored to a cure. Sonia, like all the doctors and specialists who had seen Jenny before her, took that anchor and dislodged it further, leaving my mother to sail aimlessly along, a waning flicker of hope her only guide.
• • •
The first morning at home with Jenny it took almost an hour simply to get her dressed. Wrangling her stiff limbs into clothing was a far more difficult prospect than I had remembered. Her twisted fingers caught in odd places, bending them back and rendering from her shrieks of pain that lit panic in my stomach like a fire.
“Shit!” I exclaimed as I once again failed to get her arm through the hole of a knit shirt. We were in her yellow-painted bedroom; the contents of the two boxes of clothes I had brought home from Wellman were scattered across the bed and down onto the pale green carpet. Jenny sat precariously on the edge of her bed as I stood over her. She was naked from the waist up and looked a little frightened of me, her eyes wide and inquiring, as though she wondered if I knew what I was doing. I wondered if I knew what I was doing. “What am I doing wrong?” I asked her, exasperated by my own incompetence. I tried to figure out how the hell I was ever going to get her dressed.
Mom stuck her head into the room. “Everything okay in here?” While I had gone to pick up Jenny the previous afternoon, Mom had straightened up Jenny’s old room, changing the sheets and vacuuming the rug. I had taken her industrious behavior as a sign that she was ready to help, but when Jenny and I got home, Mom disappeared into her bedroom, proclaiming she had a migraine. Jenny and I had spent the evening alone in her old room, watching Elmo in Grouchland until she finally fell asleep.
“Ehhh,” Jenny cried when she saw our mother. A pitiful edge tinged her voice. Her small shoulders shook uneasily; her eyes were bright.
An all too familiar feeling of inadequacy raised its ugly head in my belly. Leaving the shirt hanging around her neck, I hugged Jenny to me and glared at our mother. “Everything’s fine.”
Mom glanced around the messy room. A small set of worried wrinkles swam briefly across her forehead. She adjusted the thick brown belt she wore around an emerald green cotton dress. “Okay,” she said. “I’ve got to get to work, so I guess I’ll see you girls later.” She turned to leave.
“Mom?” I called out, stopping her.
“Yes?” she said. I could almost smell her trepidation.
“I’m taking Jenny to a salon this afternoon. I thought she could use some pampering.”
Mom nodded slowly. “That sounds nice.” Her tone was careful, entirely neutral.
I stepped toward her, gesturing to Jenny. “Should I make the appointment for the three of us?” I thought of the look she had given me the other night, the hope it had held. It had taken courage to open herself that way to me; I wanted to answer her with some of my own.
Mom gave me a half smile but shook her head. “I really can’t afford to take any more time off this week.” She waved at Jenny. “Have a good day, you two,” she said. And then she was gone.
I turned to Jenny, stepping back to face her. “Well, so much for bonding with Mom, huh, Jen?” I kissed the top of my sister’s hair, then wiped my lips, trying to ignore the sting of our mother’s refusal. I felt like a child who had reached out for her mother’s hand to hold only
to have it slapped away. I picked up another shirt from the pile on the bed and held it up to examine. “Okay. Back to the task at hand. The problem is these are all just too small. We need to go shopping, Sis.”
Jenny smiled, a small, hesitant gesture.
I touched her soft, pale cheek. Her skin had always been perfectly clear; I don’t think she ever had a pimple. As a teenager plagued by monthly bouts of acne, I remember asking my mother why Jenny never had a problem with it.
“Angels don’t get acne,” Mom answered lightly, as she brushed Jenny’s smooth skin with the tips of her fingers. At the time I figured the zits Jenny would have gotten if she hadn’t been such an angel were simply passed on to her demon big sister.
I shook my head at the memory, attempting to clear it from my mind. “Hold on a second,” I said to Jenny. “I’ll be right back.” I dashed down one door to my room and picked through my old dresser for a sweater. I finally found one I had worn in high school; it was too small for me now, but I hoped it would fit over Jenny’s newly expanded shape.
When I stepped back into her room, I heard a muffled cry, then saw that Jenny had fallen sideways on the bed and had her face stuck in a pile of clothes. I had forgotten that, like an infant, she needed pillows around her at all times or she would tip right over. I rushed over, lifting her as gently as I could back into a sitting position. Her eyes were glossy with panic and tears, her round cheeks flushed. She was panting, her breath hot. I brushed her dark hair back from her face and held her again. Despite her weight gain, she still felt like a child in my arms. “I’m sorry, Jen. There’s so much I’ve forgotten.”
“Ehhh … ,” she moaned lightly, rubbing her face into my chest. Her bare back was cold to my touch, so I quickly showed her the sweater.
“Let’s try this one,” I said as I carefully maneuvered her head into the new top, following with one arm at a time. The green sweater clashed a bit with the hot pink elastic-waist stretch pants I had already managed to get on over her diapers, but I wasn’t about to be picky.
