When You Go Away

by Jessica Barksdale Inclan

  When You Go Away

  A Novel

  By

  Jessica Barksdale Inclan

  If Ellen Edwards hadn't beaten metaphorically about my novelist's feet and head, this story would never have come into being, relegated to my pile of short stories. So I thank you Ellen for pushing me to dig it up and bring it to larger life. Mel Berger, my new agent, said the honest things and helped me leave another project to commit to this one. Thanks to Lexi Adams and Julia Fleischaker at New American Library. My writing group--Keri Mitchell, Joan Kresich, Marcia Goodman, Julie Roemer, and Gail Offen-Brown--urged me on, discussed at length, kept me from disappearing too often into flashback. Susan Browne, Lisa Wingate, and Carole Barksdale all read chunks sent by email and deserve praise for that accomplishment alone. Sue Graziano Adams, Mara McGrath, and Pat Mejia helped me understand the body and life of a child so disabled, and I thank them for their expertise and encouragement. The true story of a mother who neglected her children inspired me to tell the story of this mother and this family, and I can only hope she and her children are doing better. And finally, great thanks to my boys and husband for letting me sit alone in my room making up lives while my real one goes on without me.

  By morning I had vanished at least a dozen

  times into something better--Mary Oliver

  For my mother, Carole Jo Barksdale

  She lifted the blankets off her body, forcing her feet to the floor. She couldn’t look up. Not even for a moment. The baby would be looking at her. Wanting something. Everything. And she had nothing to give. Not anymore. Maybe she never had. For so long she’d felt empty, her bones hollow tubes, but now the years with the baby hummed in her chest, ready to explode, change everything, hurt everyone.

  “Ma! Ma!” The baby flung a spastic arm toward her, but she kept moving, holding her hands to her chest. Don’t look. Don’t say a word. Keep moving or it will be too late, she thought.

  There were clues everywhere, all over the apartment, easy to find even though the rooms were full of the boxes she didn’t ever want to unpack. If she hung her pictures and filled the linen cupboard, it would mean she would be with the baby forever and ever, this sad collection of square rooms truly her home, the place she lived without her husband who wasn’t even her husband any more. And with the boxes everywhere, she didn’t have to see anything, not the other children, not what she’d let happen to all of them.

  The hot hum in her chest pulsed and thrummed, and she swallowed, trying to press it back, push it down, closing her eyes and trying to take in at least one deep breath. But she couldn’t, her body jittery with nerves and hunger and fear. She forced her eyes open and moved through the apartment, grabbing her purse as she walked, picking things up and cramming them in the worn leather. She needed to take everything that would tell people the story, her letters and bills and address book. No one should know about this; she didn’t want to know.

  “Ma,” the baby cried again, the thump of her body against the wall. “Ma!”

  It would just be for a second. A minute. A half hour, the air so clean on her face, she imagined she could actually take it in, breathe as she hadn’t been able to do in months. To dislodge this fire inside her, the one that would burn up her life, her children. The baby. All she had to do was keep going, move to her car, fit the key in the lock. Then it was only a matter of her foot on the accelerator, her hand on the steering wheel, and she would have saved them all.

  “Ma! Ma!”

  She closed the front door against the baby’s cry, putting on her sunglasses, the light poison to her eyes, her body skinless and ready to burst like a terrible fruit. As she walked the corridor toward the stairwell, a woman called to her, said, “How are you?”

  She put her hands on her ears. One more word might make everything go wrong, and she walked more quickly, her purse heavy and hitting her thigh. Away. For a minute. Everything would be fine then. Better.

  “Mrs. Mackenzie? Are you all right?”

  She would be. In a second, she would have made everything right again. All she had to do was get in the car. Away from all this and everything. Away from the baby.

  ONE

  Even all alone at the new apartment, Carly knew what to do. She'd discovered the box labeled "Brooke's Room" and finally unpacked it, setting up all the supplies she would need. For weeks, her mother had been pulling things out and throwing them back in, the contents of the box a jumble of plastic and metal. Carly arranged the Johnson's Baby Lotion, hydrogen peroxide, Vaseline, toddler-sized diapers, steel wash bowl, baby wipes, Desitin, thermometer, towels, and Q-Tips on the table beside Brooke's bed, as they had been at home--their real home in Monte Veda. Yesterday, she'd found the formula and syringe because she'd had to feed her five-year-old sister, on schedule despite everything. It wasn't the first time she'd fed her, but it had been the first time she'd done it all by herself, her mother usually hovering over her saying, "Yes, now put the syringe in the peg and depress it. Right. That's very good, Honey." Brooke would try to smile, her face sometimes so still it was hard to know what she was feeling. Their brother Ryan never tried to feed her, never even watched. He was scared to. He doesn't know how to do any of this, scared of feeding tubes and syringes, and she was glad he'd gotten a ride to high school with his new friend Quinn. She was going to stay home today, again.

  She pushed Brooke's red hair back from her eyes. "Okay. Let's go," she whispered. Carly pulled down the blanket and then stopped, letting her hands fall to her lap. When they lived in their real house, their mother arranged everything just so each morning, making sure there were enough supplies for the day, sitting gently on Brooke's bed to wake her up, singing the song, "Good morning, Sunshine." Brooke would twist awake, her eyes open already because she couldn't close them because of her weak muscles, a tiny crooked smile on her lips, and her mother would begin.

  “Hello, Exceptional Individual,” she would say, using the phrase on all the letters from the school district. But their mother knew how to make it sound amazing, as if everyone would want to have Muscular Dystrophy and Cerebral Palsy just to hear the term come from their mother’s mouth. Exceptional Individual. Their mother used to be able to make everything better. But not recently. Not at all.

  Carly closed her eyes and brought forth her mother as she had been a year ago and tried to move just as she had, even though she was unable to fill the warm space her mother usually took. She wasn't big enough, even if she knew what to do.

  But Carly had to do this for Brooke and for her mother. If her mother was feeling normal, the way she had for most of Carly's childhood, she'd want Brooke cleaned and fed and happy, so she started first with Brooke's diaper, gently pulling the tape tabs, peeling away the sodden wet thing that really didn't smell because all Brooke ate was the special formula. Holding onto Brooke's arm, she leaned forward and dropped the diaper onto the overflowing trash can, pressing the soft plastic mound down with her foot. She'd have to dump the trash soon, but she couldn't until Brooke took her afternoon nap.

  She put her hand in the bowl, testing the water to make sure it had cooled down. For a moment, she pushed waves against the steel shore and listened to the slight splashing sound, and then she squeezed the wash cloth until it didn't drip and brought it to her sister's body, sliding it across her skin, up and down, and then she repeated the motion with a baby wipe, lotion, and then Desitin where Brooke had a rash. It definitely looked worse today than yesterday, but she smeared on a big glob of Desitin, hiding the red, raised skin, hoping it would go away. That was the easy part. Then there was the feeding tube--the peg--to check and clean.

  When Carly first saw the small valve in Brooke's stomach after the operation, she thought of the blow-up pool toys she
used to have, the valve sticking into her skin as she clamped onto the slippery plastic with her thighs. She almost laughed and then swallowed down her stupid thought of opening the valve and watching the then two-year-old Brooke whisk through the bedroom as she deflated.

  But it wasn't funny. It was a real hole into her insides. Carly's mom had even changed the tube that came out of it, Carly holding her breath, imagining that the tube was a live part of Brooke like a vein or nerve. But her mother laughed, told her to stop being silly, tickling Brooke after it was over. Carly had to be careful, though. It was important to clean around the peg and rub some lotion on the skin next to it. Red was bad. Red and hard was worse. Red with streaks was the worst of all, but today, Carly noticed, looking at her sleeping sister, everything seemed fine.

  After the diaper and the Desitin, it was time to wash Brooke's face and hands and feet and back. Carly quietly pulled up the guard rail and took the bowl to the bathroom, rinsing it out and filling it with warm water, hurrying back into the bedroom. She sat down and dipped the washcloth into the warm water in the wash bowl, wringing it out carefully, and stroking Brooke’s curved back, her tense feet, her legs and arms that whipped out periodically. Carly didn't really like looking at Brooke, her skin the color of plain white bread, all her bones just underneath like a terrible, awful sandwich, and today, there were strange red spots on her hips and thighs. Carly ran her fingers on the red circles, the skin rough but not broken. It wasn't infection. It didn't look like infection.

  Carly wiped up and down, mumbling the soothing sounds her mother always did, sort of a "Yes, yes, yes. It's all right. That's good," in a quiet rhythm. She had to move slowly because Brooke was awake now, and she hated too much pressure on her skin, crying sometimes about a blanket placed over her body or their dog Maxie licking her face, or a dress that poked under her arms. At least Carly didn't have to worry about Maxie, who now lived with Carly's friend Sam back by the old house. If he knew, her father would be relieved Maxie was gone and so would Brooke’s Nursing Case Manager at the clinic. But when people tried to make her get rid of Maxie, she would say, “All kids want a pet. And she’d like every kid. Like anyone else.” But Mom agreed to give away Olive, their black cat, after Brooke got pneumonia for the first time.

  Brooke had missed Maxie after they moved, and Carly would tell her stories about the Wonder Dog, how she was running up and down Sam's huge yard, barking, wagging her tail. Carly hoped it was true. Sam didn't even have her new number. "We'll call you when we get the phone hooked up," her mother had said, waving to Sam and his mom Lara, Lara saying, "Don't worry, Carly. It's just till you're settled in a real house. We'll take care of Maxie as long as you need us to." That had been two months ago; the phone wasn't connected yet, and her mother hadn't even begun to look for a real house. It's too late to call Sam now, Carly thought. Maxie probably doesn't even miss us anymore.

  Carly moved the steel bowl to the floor and scooted up towards Brooke's head because now it was time to take her temperature. It was very important to take her temperature every day because a fever would mean infection, either because of the peg or because of pneumonia. Brooke got an infection twice last year--her fever going up so high her mother had rushed her into a bathtub full of ice. Later, after Brooke came back from the hospital, their mother put the antibiotics in through the peg along with the formula. There was some still left in the refrigerator, the bottle quarter-full of pink fluid moved to the new apartment along with the ketchup and mustard and salad dressing.

  What Carly worried about since yesterday was the ventilator her mother had been talking about a couple of days ago. After her last hospitalization, Brooke was fitted with a tracheotomy plug and a collar during her last stay in the hospital, so when she needed the ventilator later, they could start it up right away. Carly hated the sound, the wheezy air, the metal hush that meant Brooke couldn’t live on her own.

  Carly had searched all the boxes in the living room, and she couldn't find anything that resembled the ventilator that had come home the last time. But if she did finally find it, she couldn't just attach it and turn the switch. There had to be some doctor's visit or at least a therapist to come over and show Carly how to adjust it.

  At night, Brooke breathed so quietly at times, Carly was sure she'd died. Now that Carly was sleeping in her mother's bed, she'd creep out and stand over Brooke, listening, finally poking her sister gently on the arm, grateful for a snort and the fling of an arm. She'd pull Brooke up on the hospital bed, using the switch to adjust the head, thinking that if Brooke slept sitting up straight, she'd breathe more easily. Only then could Carly go back to sleep.

  Carly picked up the thermometer. This was a great thermometer, the important part as smooth as the inside of an eggshell. When she was little, she'd had to hold the pointy stick under her tongue for what had seemed like forever, and Ryan told her stories about the old-fashioned glass kind in his butt. Carly didn't believe him because he'd always been like that, kind of gross, talking about boogers and saying "Shit" and "Fuck" even when there were adults around. Now, he didn't even talk much at all, leaving the house early to catch his ride and coming home long after Carly had fed Brooke, asking her only, "Did you talk to Mom?" But she didn't want to think about Ryan now. He hadn't even asked her if she wanted to go to school. He just ate three pieces of toast and slammed out the door.

  After holding the thermometer on her own skin to warm it up, Carly pressed the thermometer against Brooke's ear, causing Brooke to say, "Ma!" But before her sister could fling a tiny arm at her, she had the reading. 99.0. That was a fever. She tried it again in the other ear. 98.9. Carly bit her lip. Not normal, but not an official fever. Only four tenths. Or three tenths, depending on which side was real. She put the thermometer down, deciding she would take it again later. Just to be sure.

  "Ma!" Brooke said. "Dare i Ma?"

  Carly closed her eyes. How should she answer that question? How could she tell Brooke she had no idea where their mother was? "Should I sing?" she said finally.

  "Da."

  Picking up the syringe, Carly began to sing "Good Morning Sunshine," knowing that their mother was Brooke's only sunshine. Brooke never made the sounds for Carly that she did for her mother. How long, Carly wondered as she sang, could this go on?

  Before she'd come into the bedroom, she'd mixed up the formula in the kitchen in a Pyrex measuring cup, the one her mother always used, and she carefully dropped the medicine in. She didn't know what it was for, but her mother had always squeezed out two drops from the brown bottle and two drops from the plastic bottle. As she put the can of formula away, she noticed that there wasn't much formula left, maybe two days worth. But by then. . . . well, things would be better.

  Carly sucked formula into the syringe and attached it to the tube connected to the peg for feeding. The tube looked dirty, and she wondered if she had to clean it. Her mother sometimes talked about "flushing" the tube, so Carly decided she'd try later. "Okay. Time for breakfast."

  "No!" Brooke began to squirm.

  "Does it hurt?" Brooke moved from side to side. "Stop it, Brookey. Let me sing. I'll sing again."

  Carly began to sing the song, and Brooke stopped moving, turning her head to look at Carly. It seemed to take forever for the food to go in, and from what her mother had told her, it should never go in too fast. "Keep a steady strain," her mother had said, leaning over Carly's shoulder as she fed Brooke. "That's the way. That's a girl."

  Carly stopped singing the words, humming instead, and Brooke turned her face to the wall, reaching out a tiny hand to touch it. She was so small, Carly thought, pressing and pressing on the syringe with her thumb. Brooke had always been small. Back when she had been a tiny baby, before her body had curled and they knew all the ways her body would go wrong, Carly would bring her friends into the nursery to show off her new sister. Carly had been seven, almost old enough to babysit she thought, and Brooke was like her living doll. "She's sooo cute," her friends would say, Brooke
's eyes wide and blue, her hair like a fire next to the cotton sheets. Her mother would let them take turns holding her in the oak rocker Grandma Mackenzie--their dad's mom--had given her mother when Ryan was born.

  But after a few months, Brooke wasn't so cute any more. She never really learned to crawl or walk, sort of pulling and pushing herself on the floor, never rolling over or sitting up for more than a second or two at a time. Her mom and dad went to the doctors all the time and then they came home with awful words that sounded like metal on Carly’s tongue: intraventrical bleed, ataxic, spastic. From then on, there were always nurses at the house teaching her mother how to care for Brooke, and the room was full of medicine and supplies, her mother taking down the crib mobile that had been Carly's and pulling out the crib toys because they needed room for the monitors. Carly didn't bring her friends to the nursery after that.

  She refilled the syringe and slid it slowly into the peg, knowing that it was almost over for now, until later this afternoon. Her mother fed Brooke three times a day, but before they moved, the doctors told her to feed her four times in smaller amounts because she was getting sick from her feedings. "Like diarrhea?" Carly had asked, even though what came out of Brooke was already like water.

  Carly pulled the syringe out and rested it in the empty measuring cup. She lifted and slipped a clean T-shirt over her head, drawing her thin arms through the holes. Usually, her sister smelled like Christmas, sweet and sugary and soft, but lately the smell had changed, grown stale and older. Like how Carly smelled after playing volleyball during PE. Brooke wasn't a baby anymore, but a person who might want more than lying on the bed and watching TV.

  Tugging at the shirt and smoothing it over Brooke's flat belly, Carly realized it was the last clean shirt. She'd have to go down to the laundry room and do a wash, and she hoped there were still quarters in the jar by the front door.