By the time John turned 4 months old his parents were told to institutionalize him. ""He'll never walk, talk, never sit up on his own, never be aware," the doctor told them. "He'll never know you, never respond to you. He can't possibly live to be more than sixteen or seventeen. Forget you had him, and start over with another one."
Rex and Stephanie looked down at their infant son, sleeping quietly in a hospital crib. "You're wrong," Stephanie said. "He's going home with us. He'll do just fine."
"You're deluding yourself."
"I'll prove you wrong."
John had been born perfect—a dark haired cutie, the angel of his parent's life. But, at two months he received his DPT shot and had a severe reaction. The brain damage that it caused left him the victim of multiple seizures per week, and left his parents scared and exhausted.
I met them when John was six. His little brother, Justin, was just turning three. An ex-special education teacher, I was amazed at the story Stephanie unfolded about life with John. Not only did he recognize people and understand limited conversations, he was the social butterfly of the birthday party being thrown in his little brother's honor.
"Hi!" He stretched out his little hand. "Howa' YOU?" His smile, slightly twisted, lit up the October day like a second sun.
Rex didn't last long after that. He rarely interacted with Stephanie, never seemed to acknowledge John.
Even Justin couldn't entice him to participate in family life. Within a couple of years he'd left to start another family. Visitation was kept only after phone calls from his ex-wife, begging him to take the boys for an afternoon. Often Rex came for Justin, making excuses not to take his eldest.
Stephanie's life evolved into one of caretaker for her mentally challenged angel, and both mom and dad for Justin. She tried to split her time evenly, but knew she often failed.
"It's okay, Mom," Justin told her. "Don't worry. You take care of John now. I'll do it when I'm bigger. We'll take turns."
John's seizures abated as he reached teenage years, which was a blessing. With his increased size Stephanie often found her body throbbing. Helping him in and out of the bathtub, or off and on the toilet wore on her. "I hurt all the time," she sighed one day. "He'll only get bigger. What do I do? I can't afford to hire anyone...No one knows how to take care of him right, anyway."
"What about group homes?" I suggested.
"He's too young!" she nearly cried. "That'd be like sticking him somewhere to get rid of him."
I nodded, knowing the doctor's words from years ago haunted her.
I knew for sure a few weeks before his sixteenth birthday.
"I dreamed I went into his room and...found him dead," she whispered over the phone.
I said a silent prayer and sighed. "Steph, he's beat the odds. What makes you think that doctor was right about anything?"
She laughed, but I still heard fear in her voice. "That's true."
"God loves John," I told her. I'd told her that so often. "Just like He loves you."
"I don't know how much He loves me," she said, as always, "but you'd have to be a fool not to love my angel."
Life plugged on, without much changing. Stephanie made the sacrifices necessary to care for John. Her body continued to deteriorate. He grew bigger, his smile grew more lopsided and brighter, and Justin began to prepare to leave the nest.
Last month Stephanie had surgery on her knees. The lifting finally wore them out. The surgeon told her because of the stairs in her apartment they'd have to move. Her sister watched John for the day and we hustled, moving their stuff, cleaning the apartment. As we finished John came in the now empty dwelling.
"Hi'ya, sweetheart," he smiled. "Howa YOU? Have'a goo' day? Howa YOU?"
He leaned on his mom, towering above her.
"I'm good," she said, stroking a cheek badly in need of a shave. "And I love you, too."
"Howa YOU?" he echoed, patting her shoulder.
"Loving you," she repeated.
They've had the conversation a million times—it's the only one John can create, but Stephanie knows what he's saying. At twenty-two John has leaned on her his whole life, using his crude communications and pats on the back to tell her about his love and appreciation.
It's the only way he can.
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