Just Beyond the Clouds

by Karen Kingsbury

  “Lower your voice.” Mike’s tone was stern.

  Mary could feel her husband’s body tense up beside her. As in all those years when Cody was growing up, it would be her role to keep her son’s anger at bay. “No one’s trying to get rid of Carl Joseph. That’s not what this is about.”

  “Yes, it is!” Cody paced toward the patio slider and back again. “Independent living?” He laughed, but the sound was colored with fury. “That’s like packing an eight-year-old’s bags and sending him on his way.” The muscles in his jaw flexed. “Carl Joseph is as gentle and innocent as a little kid. He has epilepsy. I mean, come on. You can’t really think you’re going to send him into the world and everything’ll be okay.”

  “The center has a plan for each student, a list of goals that have to be met before the student is introduced to independent living.” Mike was calmer now. He moved to the sofa and Mary followed. When they were seated, Mike put his arm over the back of the sofa and leaned into the cushions. “You haven’t been around, Cody. You don’t know how much this means to him.”

  “Oh, sure.” Cody bent at the waist, his words directed at Mike like bullets. “It’s not how much it means to Carl Joseph. It’s how much it means to you, right, Dad? Big Mike Gunner, former NFL hotshot.” He pointed at Mike. “You walked out on him because he wasn’t like other kids. Remember?” Tears worked their way into Cody’s voice.

  “You’re right.” Mike leaned forward, his elbows on his knees. “I was young and ignorant, and I didn’t know how to handle things.”

  Mary couldn’t sit by and let Cody say these things. Not when Mike had so completely changed. “Things are different now. Your father loves Carl Joseph very much.” She held her hand out toward Cody. “Can’t you see? Both of us only want what’s best for your brother. Whatever that is.”

  Cody let his hands fall to his side. “I’ll tell you what that is.” He looked back toward the sliding glass door, out to the place where Carl Joseph was smiling and making his way around the garden, tossing weeds into a bucket. When he spoke again, Cody’s words were squeezed through clenched teeth. “What’s best is keeping him home where he can be happy and loved, where no one will laugh at him and call him a retard the way they did when we were out today. Where he’ll be safe if he has a seizure, and he can get emergency medical help if he needs it.” Cody’s eyes were wet, and his emotion spilled into every word. “Carl Joseph is the most precious kid I know, but regardless of his age he’s just a kid. Keep him home and protect him. Love him the way he deserves to be loved.” Cody dragged the back of his hand across his cheek. “That’s what’s best for him.” He hung his head and made both his hands into fists. Then he glared at Mike. “What do you have to say to that?”

  Mike waited. He was calmer than Mary had ever seen him. “Are you finished?”

  “Yes.” Cody spat the word.

  “Okay.” Mike took a long breath. “First of all, everything we’re doing for Carl Joseph these days is because we love him. We love him very much.” Mike stood and went to the far window. He sat against the sill and faced Cody. “Have you watched your brother lately?”

  Cody’s voice rose. He pointed to the place where Carl Joseph was still working. “I watched him cover his face and start rocking when the guys at the gym called him a retard. So, yes. I guess I’ve been watching him.”

  “Getting made fun of is part of life.” Mike was unfazed. “I’m talking about his day-to-day activities, the way he lives now. Six months ago, your brother would struggle out of bed, drag himself to breakfast, and barely be able to feed himself when your mother set a plate of eggs in front of him. After breakfast he would curl up on the couch and watch cartoons for a few hours. He’d eat again and maybe walk outside to visit Ace. Then he’d play video games until lunch.” Mike grabbed a quick breath. “After lunch he’d fall asleep watching Nickelodeon until I got home at five.” Mike paused. “It wasn’t much of a life, Cody. You have to admit.”

  “But he was safe and he was loved.” Cody’s response was immediate. He took a step closer to his father, his words filled with passion. “The doctor said he won’t live very long, anyway. Another ten years, maybe. At least let him live it here, where he’s loved. Where he has everything he needs.”

  Mike didn’t blink. “He doesn’t want that.”

  “No, of course not.” Cody shook his head. “Not now that you’ve filled his head with impossible ideas.”

  “Cody.” Mary leaned forward and waited for him to look at her. “What your father’s saying is, Carl Joseph’s not the same person he was back then.”

  “He’s not.” Mike looked out the back glass door and a smile tugged at the corners of his lips. “Even with the dangers of epilepsy, your brother gets up early now. He comes to the kitchen wanting to make his own eggs. He eats with table manners and then he helps with dishes. He talks about his friends at the center, the issues they’re struggling with, and when he walks around this place he stands three inches taller than before.” Mike turned his attention back to Cody. “You know why? Because he’s proud of himself. He has a plan and a purpose. He’s excited about life.” He paused. “And you mean to tell me you’d deny your brother all of that?” He let out a single, frustrated laugh. “You’re supposed to love him most of all.”

  “I do!” Cody shouted the words. Then he gritted his teeth and forced himself to lower his voice. “I love him the most because I love him the way he is. I don’t need him to perform some sort of circus act in order to feel good about him.”

  “That’s not fair, Cody.” Mary went to him, but he pulled away. “You were with Carl Joseph today. Didn’t you see how different he is? How he gets into a car by himself and buckles his own seatbelt? He has more to talk about, and he’s excited about reading and getting around by himself. Didn’t you see that?”

  “And that’s worth risking his life?” Cody stared at the ceiling for a moment and then back at her. “Okay, fine. Take him to the center and let him learn how to buckle his seatbelt. But don’t fill his head with ideas about independence. Can you imagine it, Mom? Can you picture Goal Day?” Cody made the last two words sound ominous. He pointed to the entryway. “Carl Joseph packs his bag and walks out that door and what? He gets an apartment? He’ll burn down his place or get hit by a car the first week, Mom! He’ll have a seizure and choke on his dinner. It’s insane.”

  “We understand the risks. More now, since our meeting with the doctor.” Mike’s expression fell. “Independent living might not be possible for Carl Joseph.” His eyes lifted to Cody’s. “But we have to try. It’s what Carl Joseph wants.”

  Cody’s anger eased some. “So maybe I can help him feel more independent. We can run errands together and he can keep taking classes—so long as he doesn’t make a plan to move out.”

  “We’ve thought about that. We’re even thinking about taking him out of the center.” The struggle they’d been living through was evident in Mike’s voice. “But that’s not what Carl Joseph wants.”

  “Of course he wants the center.” Cody’s tone softened. “He thinks it’ll make you happy. If you asked him to drive the car out onto the interstate, he’d do that, too. Whatever it takes to get your approval. But here’s the problem. Carl Joseph doesn’t know how dangerous this is. He’s trusting you.” He looked from Mike to Mary. “And you. And that Elle Dalton teacher of his. He’s a kid. He doesn’t know the difference. He’s believing the adults around him, with no idea what independent living really means.”

  For the first time, Mike didn’t have a response. He hung his head, and when he looked up, his focus returned to Carl Joseph working outside.

  Before he could think of something to say, Cody crossed his arms. “I’m sorry for my temper. It’s been a long day.” He headed for the front door, but then he stopped. “Please . . . think about the doctor’s diagnosis. Don’t let Carl Joseph dream about something that can never happen. I love that kid.” His voice broke. “I love him too much to see him hurt.”
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br />   When he was gone, Mike pulled Mary into a hug. “What’re we supposed to do?”

  She searched his eyes. “Maybe it’s time to pull him out.”

  Mike was quiet for a minute. “Elle’s been doing research on people with Down Syndrome and epilepsy living on their own, right?”

  “That’s what she said.”

  “So we can’t pull him out yet. Not while there’s still a chance he could reach his goal.”

  Mary wasn’t sure, but she didn’t want to talk about it anymore. She leaned up and kissed his cheek. “Okay, Mike.” She eased back. “I’m going for a walk.”

  He looked over his shoulder. “I’ll be outside with Carl Joseph.”

  Mary nodded, but only because she couldn’t speak. If she did, the torrent of tears building inside her would release for sure and she wouldn’t have any strength left to make it to the front door.

  On the way out, her eyes fell on a picture of Carl Joseph at age twelve, back when she knew without a doubt what was best for her son. His past, his present, and everything about his future. Back when independent living for a child like Carl Joseph would’ve been absolutely ridiculous.

  The way maybe it still was today.

  Chapter Eight

  When Mary stepped outside, she looked around for Cody, but her oldest son was gone. Probably jogged back to his house on the other side of the property. She sighed and began walking toward the long, winding driveway. When she needed to think, this was where she went. She would set off down the drive and then right and up the hill to the end of the road. The area was wide open with only a few clusters of pine trees and mesquite bushes and enough sky to clear her head.

  But today she kept her eyes down, and for the first few minutes she replayed everything Cody had just said. It was easy to mistake Cody for an angry man with no willingness to bend, opinionated, always thinking he was right. But that wasn’t the true Cody.

  Cody wasn’t trying to be right or strong-headed. He loved Carl Joseph. For most of his childhood and adolescence he cared more about his little brother than he did about anyone else. He was Carl Joseph’s friend and mentor, and together those two boys had filled her heart with joy.

  When Cody first started riding bulls, he’d come home every few weeks and Carl Joseph would be waiting for him at the door, a big, wide grin on his face. He’d fling open his arms and run toward Cody. “Brother! You came back, Brother!”

  Mary felt tears in her eyes and sniffed. She could hear him still, the joy in his voice, the anticipation whenever Cody came home. Almost always, Cody would bring video from the rodeo events, and he and Carl Joseph would sit in front of the TV watching Cody’s rides over and over and over again. “You’re a good bull rider, Brother. Very, very good!”

  Even now, Carl Joseph wanted nothing more than to be a bull rider like Cody. Yes, because Daisy was impressed by the idea. But also because it would make him a little bit more like the brother he idolized. Four years ago, when Ali died, Carl Joseph brought Cody more comfort than all the rest of his friends and family combined. Carl Joseph was the one who pulled Cody aside at Ali’s funeral and pointed toward heaven. “You know what I think, Brother?” he said as he put his arm around Cody’s shoulders. “I think up there in heaven Ali has the fastest, most beautiful horse of all.”

  Mary had been standing close enough to hear the conversation. “Yeah, Buddy. Maybe you’re right.” Cody looked up, his eyes filled with pain.

  “I am right, Brother. God would definitely give Ali a horse in heaven.”

  It was the first time that terrible day that Mary saw Cody smile. Because Carl Joseph had known exactly what Cody needed to hear in the wake of such a devastating loss.

  Of course Cody didn’t want anything to happen to Carl Joseph—none of them did. But was that reason enough to hold him back, to keep him home in front of a television when there was a chance he could manage his epilepsy and heart disease on his own? Mike was right about the changes in Carl Joseph.

  Mary hugged herself and slowed her pace. This was never how she’d pictured things going with Carl Joseph, not since the day she first held him.

  Mary reached the end of the driveway and turned right. As she did, as she faced the long hill before her, the years disappeared and she was there again, in the hospital, celebrating one of the happiest days in her life—the birth of her second son.

  The day they laid Carl Joseph in her arms, Mary knew something was different about him. His cry was different from Cody’s, and his neck looked shorter and thicker. The thought of Down Syndrome crossed her mind—because she remembered once during her pregnancy, when she’d stopped to admire a newborn in the grocery store with her mother. Conversation between Mary and the woman lasted the better part of thirty minutes, and at the end, the woman stroked her baby’s forehead. “She has Down Syndrome. The doctors think she’ll need to be institutionalized.” Tears glistened in the woman’s eyes. “But I won’t let that happen. Not to my little girl.”

  The scene had terrified Mary and plagued her for the next week. But then she let the possibility go. She wouldn’t have a child with Down Syndrome. It wasn’t something that ran in her family, and besides, she was taking great care of herself. Her child would be even healthier and stronger than Cody, because she knew more about being a mother the second time around.

  But that day in her hospital bed, looking down at Carl Joseph, the fears returned. What if there was something wrong with him, something that would affect him all his life? She shuddered at the thought. Her baby was perfect. Beautiful and whole and healthy, no matter what doubts plagued her.

  Not until the end of his first week did doctors do a blood test to confirm her fears. Carl Joseph had Down Syndrome; there was no doubt. One in a thousand babies were born with the chromosomal defect, and in this case, he was that one. He had an extra chromosome 21.

  The doctor went on to say that had Mary submitted to an amniocentesis, they might’ve found out about the birth defect sooner. “Then”—the doctor pursed his lips—“you might’ve had options.”

  “Options?” Anger flooded Mary’s veins. “You mean abortion? I could’ve aborted my baby if I’d known—is that what you’re saying?”

  “Just a minute.” The doctor held up his hand. “I’m only saying I advise all my patients to have an amnio. You declined.” He looked at Carl Joseph. “Now your options are far more limited.”

  “Look”—Mary pointed to the door—“you can leave now. I never . . . never would’ve aborted Carl Joseph just because he isn’t like other children. And I never want to see you in this room again.”

  The doctor left, and Mary sat in her bed trembling. The baby in her arms looked up at her, all innocence and tenderness and love, and Mary realized something. This child needed her more than Cody ever had. “You’re a miracle, little Carl Joseph. A miracle from God. Everything’s going to be okay.”

  She cooed and kissed Carl Joseph’s cheeks until an hour later when a new doctor entered the room, a man with kind eyes and a gentle manner.

  “I’m Dr. West,” he told her. “I understand you’ve heard the news about your little boy.”

  “Yes.” She didn’t realize it until that moment, but she had tears on her cheeks.

  “Your son will always be different, but that doesn’t mean he won’t bring a great deal of love into your life.”

  “Are you . . . are you recommending an institution?” The thought horrified her. She couldn’t imagine taking her baby home, feeding him and holding him and rocking him all so when he was three or four years old she could drive him to some brick building and say good-bye.

  She didn’t wait for Dr. West’s response. “I can’t put him in an institution, Doctor. I can’t do it.”

  Dr. West put his hand on her shoulder. “I wasn’t going to recommend that. That’s an old way of thinking, the idea of institutionalizing children with Down Syndrome. Now most doctors will tell you to take your baby home and love him. You feed him and read to him and cuddle
him.”

  “Until . . .” She wasn’t sure she understood.

  “Indefinitely.” Dr. West smiled. “Having a child with Down Syndrome is like having a child that will never grow up. Your baby, Mrs. Gunner, will level off in cognitive thinking and social interaction at about the age of a second grader. He won’t learn to read or write or live on his own. But these days, we’re finding that children with Down Syndrome who are allowed to live at home live longer than those who are placed in institutions.” He opened the folder in his hands and studied the information inside. “Carl Joseph has a healthy heart for now. He could live into his forties, if things go well for him.”

  The doctor talked to her for a few more minutes. Then he smiled and patted Carl Joseph’s head. “You and your baby need some time alone.”

  “Yes.” She held Carl Joseph closer. “Thank you.”

  After Dr. West left, Mary wept over her tiny baby. He would never talk clearly or walk normally, and he wouldn’t look like other children. He wouldn’t have a first day of kindergarten, and he’d never play high school football. He wouldn’t graduate and he wouldn’t have a career goal. He’d never fall in love.

  But he would be hers forever.

  And as her tears fell that day, she felt herself bonding to Carl Joseph as she’d never connected to anyone or anything in her life. Mike spent much of his time away from home, and Cody was independent from the moment he could walk. But Carl Joseph . . . Carl Joseph might have Down Syndrome, but he would be hers and always hers. Forever and ever.

  Now as she walked away from the house, images from that day filled Mary’s heart and overflowed into her soul. She kicked at a few loose pebbles as she made her way up the hill. After Mike left all those years ago, her feelings for Carl Joseph only grew stronger. She protected him from strange glances and mean comments, and she made sure he never wanted for anything. If he needed his shoes tied, she tied them. If he wanted breakfast, she made it. She waited on him and looked after him and treasured the times when they cuddled together in front of the television. When he left for his special school on the short bus, she thought about him constantly until he returned home safely.