“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.
School taught Carl Joseph very little, as it turned out. He learned to color and stack blocks and how to share a puzzle during carpet time. But after a few years it became clear to Mary that special education—at least at their small-town school—was little more than glorified babysitting. She pulled Carl Joseph out after fifth grade.
When Mike’s child support wasn’t enough to pay the bills, Mary took a night job. And throughout those years she comforted herself with the truth that was a balm to her hurting heart: Carl Joseph would always be hers. That was the balm. Never once during Carl Joseph’s childhood or teenage years had she ever considered that he might want to move out on his own one day.
She slowed her pace. Independent living was Mike’s idea, of course. Cody was right about that part. But not for the reasons Cody guessed. Mike was not embarrassed by Carl Joseph, nor did he want their youngest son to achieve great things to make the two of them feel better about having a handicapped son.
After Mike returned to their lives, it took only a few weeks before he came to her on the front porch one day. His eyes were red, his cheeks tearstained. “Mary, I’m sorry.”
She looked long and deep into his eyes. “About what?”
“About all I’ve missed.” He coughed, struggling with his words. “I’m so s
orry. I never… never should’ve left.”
“Aw, baby.” She put her arms around his waist. “You’ve already told me that a dozen times. It’s okay. We’re together now; everything’s different.”
“But…” He fought back another bit of sorrow. “I haven’t told you how sorry I am about Carl Joseph. I ran from him, the affairs, the other women. I was always running away from Carl Joseph. When… when I should’ve run to him. I should’ve embraced him.” He pressed his fist to his chest. “That kid has worked his way in here so fast it makes my head spin. He’s wonderful, Mary. I love everything about him.”
Mary blinked and remembered how it felt to hear those words, how it made her want to shout to the heavens that finally Mike understood how wonderful it was to have Carl Joseph as a son. Mike had missed so much, all the years when Carl Joseph’s wonderment at the world around him was enough to make Mary see all of life through new eyes.
She reached the top of the hill and looked out over the fields. Ever since that day, Mike had grown more and more attached to Carl Joseph. But Mike was also busy, making a name for himself in the restaurant business. When Cody was home, Carl Joseph never left his side. And Mike was usually at the restaurant. It would’ve been easy for Cody to miss how close Carl Joseph and Mike had become.
But that didn’t change the facts.
The idea of independent living came up quite innocently. One day after work, Mike went to the doctor for a checkup. When he came home that evening, his eyes were shining. He handed her a brochure. “Read this.” His voice held a sense of awe. “I had no idea.”
Mary looked at the flyer. Written across the top it said, Independent Living Center—give your disabled child every chance for a bright future.
She drew a deep breath and closed her eyes. Never in a million years would she forget how she felt in that moment. Her heart skipped a beat, and she almost handed the pamphlet back to Mike, almost told him to rip it in half and never mention the words “independent living” again.
She’d heard of such a thing more than once in the years leading up to that moment. She’d heard about it, and every time she’d felt sick to her stomach. Carl Joseph, independent? The boy would be lost in the world without her, without the safety and security of the home she’d made for him.
But with Mike standing there, she had no choice. She read about the full-time program offered at the center, and the testimonials from family members of people with Down Syndrome. How they were grateful to the center for giving their son or daughter a chance at the sort of life everyone deserved.
Mary wanted to scream at those parents. At first, she’d felt the same way Cody felt, that a child with Down Syndrome couldn’t possibly understand what he did or didn’t deserve. The entire idea felt like something created by able-bodied people and from the viewpoint of able-bodied people. A program that tried to force people with Down Syndrome into a mold that seemed normal and acceptable to people without disabilities.
But it was the photo on the inside page that caught her attention. There, smiling bigger than life, was a young man with Down Syndrome. Beneath his picture it said, “I’m a man now, not a little kid. This is my life. All my dreams are coming true—Gus, Age 22.”
Mary stared at that photograph, and everything she’d believed about her life with Carl Joseph began to crumble before her eyes. Was this the life Carl Joseph deserved, the one she’d unwittingly denied him?
Mary stared at the brochure for a long time. Then she handed it back to Mike and in a voice pinched with emotion, she said, “Let’s talk to Carl Joseph.”
Mike had done the talking when they brought the topic up to Carl Joseph later that night. Mike explained that maybe it was time for Carl Joseph to attend adult school, time to learn how to handle money and take the bus places. Maybe even time to get a job.
Carl Joseph took a minute or so to absorb what was being said. But as it all started to click, he sat up and looked from Mike to Mary. “You mean… I get to be a man like Daddy?”
What was left of Mary’s doubts fell away in that instant. She crossed the room and knelt in front of Carl Joseph. Then she put her arms around him and hugged him. Independent living was the most terrifying thing she could imagine. But if it made Carl Joseph feel like a man, how could she possibly deny him the chance?
They enrolled him at the center the next morning.
Mary smiled at the memory. Gus was one of Carl Joseph’s friends now, someone who was also working very hard toward his Goal Day.
She reached the bottom of the hill and turned left into their driveway. There, standing on the front porch, was Carl Joseph, his hand shading his eyes. “Mom?” he shouted.
She was too far away to yell back, but she waved at him, big so he could see. With that he hopped down from the porch and ran to her. Mary stopped and admired him. He did not run with the grace of an able-bodied person, but he ran with gusto and determination, huffing and puffing as he came. When he reached her, he stopped and fell into place beside her. “Hi, Mom.” He gave her a big, open-mouthed smile.
“Hi, Carl Joseph.” Mary swallowed her sadness. Never mind Cody’s anger. What they were doing was right—as long as they could feel safe about Carl Joseph’s epilepsy treatment. The classes were helping Carl Joseph feel good about himself and good about life. “Did you finish weeding?”
“Yes.” He spread his arms out wide. “I did the whole thing. All of it.”
“Good.” She nodded. “You’re a hard worker, Carl Joseph.”
“I am.” He stuck out his chest. “Teacher says I can have a real job by Christmastime.”
“Really?” A chill ran down her arms. “By Christmastime?”
“Yes.” He held up one hand and made an exaggerated show of counting, his brow knit in concentration. “Seven months, Mom. It’ll happen in seven months.” He laughed out loud, the excited laugh of a child. “Then I’ll be almost ready for Goal Day.”
She hid her fears. “That’ll be exciting.”
He moved closer and took hold of her hand. “It’s okay if I hold your hand still, right, Mom? Even if I’m a man?”
“Yes.” She felt her heart melt. “Of course. It’ll always be okay.”
“Good.” They walked for a few seconds in silence. Then Carl Joseph turned to her. “I’m not sure about Cody.”
Mary smiled. “Me, either.”
“ ’Cause you wanna know why?” Carl Joseph’s smile faded. Concern filled the lines in his forehead.
“Why?”
“ ’Cause he was mad at Teacher today.” He shifted his jaw to one side and looked away. “He was mad at my friends, too.”
“Mad at them?” As difficult as the idea of Carl Joseph’s independent living was for Cody, Mary couldn’t picture him being rude to his brother’s friends.
“He came into Subway and said I had to go. He said it was crazy.”
“What was crazy?”
“Something Daisy said.” Carl Joseph wrinkled his brow a little more. “He said it was crazy.”
“Oh.” Mary wasn’t sure she understood, but that wasn’t the point. Carl Joseph had always been perceptive about people’s feelings, and this was no different. If Cody was upset, Carl Joseph was bound to pick up on it and feel confused. “Well, honey, I don’t think he thought you or Daisy were crazy.”
“Maybe the field trip.”
“Maybe.”
“ ’Cause know what I think?” They were almost to the house. Carl Joseph peered at the porch as if he was looking for Cody.
“What?”
“I think Cody’s heart needs fixing again.” Carl Joseph stopped and turned to her. His eyes were very serious. “The way it did before he met Ali, the horse rider.”
“Yes, maybe that’s it.” Mary felt a familiar sadness. Ali had been so good for Cody. She had taught him to love when it didn’t seem—outside his feelings for his brother—that he’d ever learn. And now, the best thing for him would be to meet another girl, to find those feelings once more.
But it would be easier for Carl Joseph to earn his independence than for Cody to fall in love again. She took Carl Joseph’s other hand. “How can we help fix Cody’s heart?”
“We can pray.” Carl Joseph gave a series of small nods. “We can close our eyes and pray to Jesus.”
Though once in a while Mary would pray in the quiet of her heart, prayer wasn’t mentioned around the Gunner household with any consistency. She smiled at her youngest son. “Okay, honey. You go ahead and pray.”
“Close your eyes.” Carl Joseph waited until she’d closed them. “Okay. Dear God, here I am. Carl Joseph Gunner. This time I have a prayer for Brother. His name is Cody. Please help him…” He hesitated, as if he were trying to remember what help Cody needed. When he spoke again, his words were rushed and so thick it was hard to understand him. “Oh, yes! Please help him have a fixed heart. So he isn’t mad at me and my friends, and so he doesn’t say it’s crazy. Amen.”
He squeezed Mary’s hands and she opened her eyes. “That was wonderful, Carl Joseph.” Mary pulled him close and hugged him. “How did you learn to pray like that?”
They began walking toward the house again. Carl Joseph shrugged. “It’s a life skill. Teacher says we can’t be independent if we don’t know how to talk to God.”
“Of course.” Mary could barely draw a breath. Carl Joseph went into the house, but she stayed outside on the porch. Prayer, a life skill? She sat on the glider a few feet from the door and stared at the distant mountains. Her fears about Carl Joseph’s independent living had always seemed to be about him. She was afraid he wouldn’t survive without her. But maybe she wasn’t really worried about how Carl Joseph would do without her.
She was worried about how she would do without Carl Joseph.
Which was exactly how Cody was feeling. Now it would be up to her oldest son to see that, too. Because not until Cody understood his own fears would he stop fighting the idea of Carl Joseph’s independence and do the one thing Carl Joseph wanted his brother to do.
A Thousand Tomorrows / Just Beyond the Clouds Page 27