“There is no word for feeling nostalgic about the future, but that’s what a parent’s tears often are, a nostalgia for something that has not yet occurred. They are the pain of hope, the helplessness of hope, and finally, the surrender to hope.”

Michael Ian Black

September, 1954

Austin, Texas

Joey grabbed onto Laura Beth’s hand as the specialist rustled his papers. She rubbed circles on her belly with her other hand. A self-soothing habit, he had learned. They were expecting a second child in December. But right now, his mind was focused on his first child. There was something wrong. He’d had to pull teeth to get his wife to agree to tests. Doc Peters had recommended the hospital in Austin last July. For an intelligent woman, Laura continued to be blind to their daughter’s lack of progress. A nurse watched their little girl in the next room as they found out the results.

“According to my notes, Elizabeth did eventually sit up. But then she regressed and can no longer do so unassisted. Nor does she have voluntary control of her arms and legs.” The doctor adjusted thick black glasses that were in sharp contrast to his pale, white skin. His dark eyes were carefully blank. So clinical, Joe thought. He must not be a father.

“That’s correct, doctor.”

“I’m afraid your child appears to have a spinal muscular atrophy. If the testing we did on both of you is correct, it could be Werdnig-Hoffman’s disease.”

Laura went stiff under his hand. Her circling ceased.

Joe’s heart stopped ticking for a few beats. He blew air out of his cheeks and pushed a hand through his hair. “Can you put that in plain English, and then tell us how we fix it?”

When Joe saw compassion flicker in the man’s eyes, dread filled his belly. It was bad news. Very bad news. Laura’s nails dug into his flesh.

“I’m afraid there is no cure. It’s inherited…a recessive disorder, which means both of you had to carry the gene in order to pass it on to Elizabeth. It affects the part of the nervous system that controls her voluntary muscle movement. That is why you are now seeing the ‘floppiness’, as you describe it, in her arms.” He paused a moment to let them absorb the information.

Joey stared at the tiny sunflower print of his wife’s sundress. Her legs shifted as she shuffled her feet under the chair and then back out in front of her, the little flowers swaying with the movement.

What now? Hadn’t they been through enough? He shifted in his seat, the lead in his belly weighing him down.

Laura’s high-pitched voice was sharp, piercing through the quiet. “So you are saying my daughter will end up in a wheelchair?” She caught his eye, her gaze begging him for strength as the tears welled in her eyes. “We’ll adjust. We have plenty of support. Our family, the church…”

Joe took her hand again. “Of course, we’ll get through this.”

“Mr. and Mrs. McCall, I’m afraid you don’t understand the seriousness of this disease. Most babies don’t make six months.” The doctor studied his pile of notes then pushed them aside, his voice gentle and kind. “First, she will lose any control she has left of her large muscles, and then it will spread to the smaller muscles. The disease is already affecting her swallowing mechanism. Next, it will attack her lungs. These children often die of pneumonia or from choking.”

Silence. Tick! Tick! Tick! The clock reminded Joey of a bomb ready to go off. But this explosion wasn’t taking out a soldier, it was taking his little girl.

An agonizing cry tore through the quiet room. Laura Beth clutched her belly, rocking and moaning. “No, no, no,” she sobbed. “No, no, no.”

He reached for her hand, and she jerked it away with a scream. “I want my baby! Get me my baby!”

The doctor pushed a button. “We need a sedative in here, please.”

Joey was out of his chair, his arms around this woman who had stood strong through so much. His ma had always said that a woman had a special bond with her child after giving birth. And that bond was being severed. He fought the stinging tears and hovered over Laura Beth as he would a wounded soldier. With clenched teeth, he hissed, “Don’t touch her. I’ll take care of my wife.”

“Mr. McCall, we need to talk more. There are things you both need to know, in order to be prepared for the future.”

Joey resisted the urge to clobber the man. “I understand. But right now, you’ve just sucker-punched us in the gut, and my wife is six months pregnant. We’ll continue this conversation when we’ve had time to digest the information.”

But they never went back to Austin with Lizzie. Instead, they turned to Doc Peters. He researched, called in favors from colleagues, and provided more comfort than any cold, sterile hospital. It didn’t matter. By early November, Lizzie had as much muscle control as an infant. She had trouble swallowing, going to the bathroom—anything that required voluntary movement.

Except smile. Their beautiful baby girl always had a smile on her face. Joey died a little with each grin, knowing their time together was so short. He remembered the desolation of battle and realized this was no less devasting than war. They were fighting for their lives as they watched their baby die.

Doc Peters had called them in last week with more bad news. Why not hit them again? They were a couple of punching bags at this point. They had sat down in front of that big mahogany desk with a glass of sweet tea and a smile from Mrs. Peters. And the first blow came. If the disease was a recessive trait, their second child had a one in four chance of the same fate. But the doc wasn’t convinced of the results. “We don’t know a lot about these diseases and genetics. Many of these atrophy disorders mimic each other, so it’s more of an educated guess. The specialists like to say they are certain but…”

“But what?” Laura Beth had practically screamed. “What else can be worse than this?”

Dr. Peters suddenly looked old. His shoulders bowed, and his eyes seemed faded and tired. Somehow, Joe felt responsible for that. “She doesn’t mean to yell at you, Doc.”

“I know,” he agreed with a sad shake of the head. “I wish there were some way for me to fix this. But I feel you need to be prepared for the possibilities. If it’s not a recessive trait, it’s closer to a fifty-fifty chance the unborn child will have the same problem.”

After that, Laura Beth seemed to fade a little more each day. It reminded him of when Ma went at the end. She took no pleasure in the pregnancy, refused to even think of names. They had to remind her to eat and bathe. The grief process for both her daughter and unborn child had already begun for her. He struggled to find a way to support his wife, to give back the strength she had always held for him. But there was nothing he could offer except to be there.

Max and Leroy tiptoed around the house, afraid to disturb her. Shirley came over daily, but Laura would only stare at her blankly or nod as if she were listening. She switched back and forth from snapping to sobbing at the drop of a hat. Personally, he preferred the anger. It gave him a glimpse of the girl he loved. Joe didn’t recognize the morose woman he found in his bed most nights.

When it happened, no one was ready. How could anyone be ready for the loss of a child, he wondered. It was early morning, and everyone was still in bed. Some noise must have stirred Laura Beth, for she threw her legs over the side of the mattress and heaved herself up. With her hand on her lower back, Joe watched her lumber to the crib. Lizzie slept with a pillow to keep her propped up now. It helped her breathe easier and kept her lungs clear, but she’d had a rough week.

He heard a soft exclamation as she lifted the baby from her crib. “Oh,” she said. And in that simple two-letter word, he knew their Lizzie was gone. With a deep breath, he rose and moved behind his wife and daughter, gathering them both close. For the first time in months, Laura Beth accepted his comfort and leaned on him. They rocked their little girl together, back and forth, one last time. Tears streamed down their faces as the sun rose on a new day, a childless day.