Between Heaven and Texas (9 page)

C
HAPTER 15

B
ecause Mary Dell had not stopped bleeding on her own after the delivery and the doctor had ordered the administration of a Pitocin drip, essentially putting her back into a mild labor to force the uterus to clamp down, she was pale and still in some pain. But when Donny entered the hospital room, she beamed.

“About time you showed up,” she teased.

He walked to the side of the bed and kissed the top of her head, leaving his face buried in her hair because he was afraid if he looked at her, he might start to cry. After a moment, he collected himself and kissed her again, on the lips.

“I was here,” he said. “Came as soon as I heard. I've been out in the waiting room with your folks all night, pacing and listening to your mother tell the story of how she almost died having you and your sister.”

“How many hours was she in labor with us this time?” Mary Dell asked. “Last time I heard that story, it was thirty.”

“She's up to thirty-six now.”

“Why didn't you come back here and sit with me instead? You could even have come into the delivery room if you wanted to. Didn't the nurses tell you?”

“They told me,” he said gruffly. “But a man doesn't want to see his wife in that kind of condition.”

Mary Dell shook her head. “Donald Bebee, that is about the silliest thing I've ever heard. If I had a nickel for every time I've come into the barn to find you with your arm stuck up a ewe's hoo-ha, I'd be a rich woman. If you can do that, why can't you watch your own child being born?”

“Because it's different, that's why.”

She didn't ask him to explain because she knew he was done talking. And he didn't say more because he didn't want to tell her the truth—that he'd been afraid to come into the delivery room because he was worried that something was going to go wrong, and he couldn't bear the idea of not being able to do anything to stop it.

He'd seen it happen plenty of times. Animals sometimes died in labor, especially when the births came on early. Sometimes you could help, sometimes you couldn't. That was nature's way, but there was nothing in the world Donny hated more than feeling helpless. Hard enough to endure when he was dealing with cows and sheep, but the thought of being helpless to aid his wife and son was beyond imagining, beyond endurance. It was different.

But that was all over now. Donny took hold of Mary Dell's hand as he pulled a chair up next to the bed and sat down.

“You look beautiful.”

“Do I?” She smoothed her hair with her hand. “Because I feel like somebody pulled me through a knothole backward.”

“No,” he protested. “You look beautiful. How's the baby?”

“He's fine,” Mary Dell said, beaming again. “A little bit scrawny but fine. You should see the head of hair he's got on him—thick, brown hair, just like yours. His eyes are blue. I guess we'll have to wait and see if they stay blue, but they sure are pretty. Like big blue almonds. Don't know where he got those, not from my side. Does anybody in your family have eyes like that?”

Donny shook his head. “No.”

“Well,” Mary Dell said philosophically, “maybe he just looks like himself.”

Mary Dell's happiness helped ease the knot of anxiety Donny had been carrying with him for the last twelve hours. But he knew the knot wouldn't untie itself completely until he could see his boy for himself. Until then, he wanted more information about his son, measurements more meaningful than how thick his hair was or how blue his eyes were, something concrete.

“What did he weigh?”

“Five pounds, four ounces,” Mary Dell reported. “They say that's real good considering he came so early. One of the nurses told me they don't let babies go home until they're over five pounds. He started crying as soon as the doctor spanked his little hiney. His Apgar score was seven.”

“Apgar score?”

“It's some kind of test they give babies right when they're born. They look at things like heart rate, breathing, color—things like that—and then add them up. Ten is a perfect score. Howard got seven.”

Seven. If you translated that into grades, a seven was about a C. His son had taken his first test. And gotten a C.

It wasn't bad. But it wasn't great. It was average. Only a few hours ago, all he wanted in the world was for his boy to be allowed to live. And it had happened. He was lucky. His son was alive. He weighed five pounds, had brown hair, blue almond eyes, and scored a C on his Apgar test. A C wasn't bad, especially considering he'd come so early.

Still.

“When can I see him?” Donny asked.

“Soon, I think. I asked the nurse, but she didn't know for sure. Said the pediatrician was checking him out. I was only able to see him for a second myself. They whisked him out of here and off to the preemie nursery so quick, but he was squalling so I know his lungs were fine, and he was pink as a rose, so his heart must be pumping just fine too. Hope they bring him back soon, though,” Mary Dell said and then closed her eyes.

She was quiet and Donny thought she might have dropped off. He couldn't blame her. He was tired too, and he hadn't been doing anything nearly as strenuous as having a baby. Donny closed his eyes too and dropped his head forward, but before he could doze off, Mary Dell opened her eyes and started talking again.

“How is Lydia Dale? They told me it was a boy. Rob Lee?” Donny nodded in confirmation. “That's a good, strong name. Have you seen them?”

“Not yet. Your momma and daddy are over in Lydia Dale's room now, down at the other end of the hall. The nurse was going to bring the baby in, so they could hold him,” Donny said, wondering when he'd be able to do the same with his son. “I saw him through the nursery window. He's big, all right. Near nine pounds.”

Mary Dell's eyes went wide. “Nine pounds?” she repeated, then shook her head. “That's darned near two of Howard. Must be some baby.”

“Of course your sister's baby's bigger. He was two weeks late and Howard was more than a month early. It just stands to reason.”

Mary Dell, picking up on the defensive tone in his voice, squeezed Donny's hand reassuringly. “I know. I was just thinking about Lydia Dale. She must feel more worn out than a flour-sack dress after pushing out nine pounds of baby. Poor thing.”

“Suppose so,” Donny said. “Rob Lee got a head start, but Howard will catch up to him.”

Mary Dell was about to say something about it not being a race, but stopped herself. It was natural, she figured, for Donny to already be standing up for Howard. Men were so competitive, especially about their sons. Howard was less than two hours old, and already, Donny was a daddy. If you thought about it that way, it was sweet, him being so protective.

Mary Dell smiled to herself, imagining how protective Donny would be after he actually got to hold his son. How long were they going to have to wait for that anyway?

There was a knock on the door. Mary Dell pushed herself up higher on the pillows, and Donny sat up straight in his chair, supposing it was a nurse bringing Howard to them.

Instead, the door opened to reveal the face of a very short, pale, sandy-haired man wearing a white lab coat and a pair of wire-rimmed glasses. He seemed very young to be a doctor, and the glasses, which had enormous lenses, made him look a little goofy. The blue plastic tag pinned to the coat said “Dr. Tibbets.”

“I'm a neonatologist on staff here at the hospital,” he said. “That's a pediatrician who specializes in the care of newborns, especially infants who are born prematurely or have conditions that require special medical care.”

Donny, whose eyes had been fixed on Dr. Tibbets's face as he was speaking, interrupted as soon as the man paused to take a breath.

“How is my son?”

The doctor flipped a couple of pages on the clipboard he was carrying and looked down as he glanced over his notes.

“Considering his prematurity, Howard is doing quite well,” the doctor said, in a voice that sounded just slightly surprised. “Five pounds, four ounces is just about what we'd expect to see in an infant of thirty-five weeks' gestation, the heart rate is good and sounds strong, respiration is good, response to stimulus is normal. His one-minute Apgar score was seven. And his five-minute score was eight.”

Donny glanced at Mary Dell and grinned. Eight! Eight was a B. On the second test of his life, Howard had gotten a B. That was above average.

“However,” the doctor went on, drawing out the word and squinting as he continued to study the chart, “your baby does have low muscle tone, unusually shaped ears, and his eyes are somewhat slanted. We'll have to do some tests to make absolutely sure, but the signs point strongly to trisomy 21.”

Mary Dell glanced at Donny, who wasn't smiling anymore. The doctor removed his glasses, which made him appear older and more serious.

“Mr. and Mrs. Bebee, I know this is hard to hear, but I am almost certain your son has Down syndrome.”

C
HAPTER 16

P
eople with Down syndrome have an extra chromosome in some or all of their cells, forty-seven instead of forty-six, possessing three copies of the twenty-first chromosome rather than the usual two. That is why physicians often refer to it as trisomy 21.

A syndrome, as Dr. Tibbets explained, refers to a collection of signs and symptoms that point to the presence of a particular disorder. Low muscle tone, a slanted set of the eyes, the almond shape that Mary Dell had noticed, and an unusual shape to the ears, symptoms which Howard possessed, are typical signs of Down syndrome. Other common signs of the disorder include a protruding tongue, a single crease across the center of the palms, and a wide space between the big toe and the one next to it. Howard didn't have any of those symptoms.

There are more than fifty characteristic features of Down syndrome, but the number, nature, and consequences of those characteristics vary greatly. Dr. Tibbets explained that it was too soon to know exactly how Down syndrome would affect Howard's health and quality of life, but babies with trisomy 21 often had difficulty suckling, so being patient and allowing plenty of time at feedings was important, especially since Howard was premature. He would probably be shorter than average, stocky, with a thick neck, short arms and legs, a wide face, and pushed-in nasal bridge.

Also, the doctor informed them, children with Down syndrome often suffer from respiratory ailments, and digestive problems, a slower walk due to the sort of low muscle tone Howard presented, as well as vision problems, hearing issues . . .

Dr. Tibbets kept talking. Mary Dell's eyes were focused on his face, but she couldn't take in all that he was saying; his words blurred into noise, the meaning of them muffled, pushed aside by the deluge of questions that flooded her mind.

Why had this happened? Was it something she had done? Or not done? Was it because of the miscarriages or her age? Was it because, before she'd realized she was pregnant, she'd gone line dancing at the Ice House with Donny and had a beer?

What would life be like for Howard? Would he ever be able to walk? Talk? Read a book? Ride a bicycle? Hold a job? A conversation? Fall in love? The doctor had said that Howard would probably be short, stocky and have a wide face, but what was he going to look like when he grew up? If he grew up. Would he?

When Mary Dell was in the third grade, Nancy Gayle's mother had given birth to a baby boy with Down syndrome, except they hadn't called it that back then. She'd overheard the school librarian and one of the teachers talking about it one day. They were whispering together about how Mrs. Gayle's baby had turned out to be a mongoloid and wasn't that a shame, bless her heart, and wondering how it could have happened. Nancy seemed so normal, at least that must be a consolation to her parents, bless them, what a shame, and how terrible Mrs. Gayle looked, saw her in the frozen food section of the Tidee-Mart holding a bag of peas and crying, poor thing, must have been so hard to send the baby off to that institution, but it was really for the best, wasn't it, a child like that would be such a burden, and they never lived long anyway, those mongoloid babies, so it must be for the best, mustn't it, and think how terrible it would be to have to mourn that child yet again, once when it was born and then again when it died, as it surely would soon, consider how much harder it would be on the family if they took that baby home and fell in love with it? Oh, it must be better this way, surely it must be. Mustn't it? Bless her. Poor thing.

Mary Dell hadn't thought about that baby boy with Down syndrome for years. Why would she? She'd never even seen him. She wasn't sure Nancy Gayle had either.

When they were in the fourth grade, Nancy missed a week of school. The day before she returned, the teacher told the class that they must be very kind to Nancy when she got back because her little brother had died, but they mustn't talk about it because it might make Nancy feel bad. And so they didn't, ever again. Since that day, she had never heard anyone mention that little boy. Mary Dell didn't even know the baby's name, or if he had one. She'd never heard him called anything but “that poor Gayle baby, the mongoloid.”

Mary Dell wasn't going to let that happen to her baby, no matter how many extra chromosomes he had. She grabbed the metal railing of the hospital bed.

“We're not sending Howard to an institution!”

Dr. Tibbets jerked, startled by the interruption. “Of course not, Mrs. Bebee. No one is suggesting that. For many, many years, and even into the seventies, it was standard procedure to institutionalize Down syndrome babies almost as soon as they were born. The feeling was that parents were not equipped to handle the medical needs of the children and that because the mortality rates were so high, it was better to separate the children from their parents before they could form a bond. In 1929, the average life expectancy for someone with Down syndrome was nine years.”

Mary Dell let out a short, choked cry, and Donny turned his face to the wall. Dr. Tibbets held up his hand.

“Please, you misunderstand. Everything is different now. In the 1960s, two scientists conducted a study showing that the practice of institutionalizing children with Down syndrome had a negative impact on the patients. Depriving the children of the kind of emotional support and stimulation they would have received in a family was actually adding to the problem, causing lower life expectancy and cognitive ability.”

“Cognitive ability?”

“Intelligence,” the doctor explained, “as measured by IQ. People with Down syndrome generally have a lower-than-normal IQ.”

Donny, who had been looking at the wall all this time, turned toward the doctor. “How low?”

The doctor spread his hands and gave a half shrug. “As is the case with just about every aspect of Down syndrome, cognitive ability varies from person to person. Most people with Down syndrome score in the mild to moderate range of intellectual disability, meaning their IQs fall anywhere between 40 and 70. However, some may suffer from more severe disabilities, while others may possess intelligence in the near-average or even completely average range. It's really too soon to tell. But you need to remember that IQ isn't the only measure of intelligence or ability. Howard is going to have strengths and weaknesses, just like any other child. The best thing you can do to help Howard reach his full potential is to build on his strengths and provide him with a loving home, filled with lots of intellectual stimulation.

“You,” the doctor said, looking first at Mary Dell and then at Donny, “will be Howard's first, best, and most important teachers. There aren't many books written about Down syndrome, not for lay people, but I'll make copies of some articles from medical journals that might help you better understand what you're dealing with. And I'm going to get you two books written by people who
have
Down syndrome, so you'll know what your son might be capable of. The first,
The World of Nigel Hunt,
was written by a teenage boy from England back in 1967, when most people, even medical professionals, didn't believe people with Down syndrome could read books, let alone write them. The second,
My Friend David,
just came out recently. The coauthor, David Dawson, is a forty-seven-year-old man with Down syndrome.”

Mary Dell, who was now taking in every single word the young physician uttered, said, “Forty-seven? So . . . people with Down syndrome can live into their forties? What about Howard?” she asked. “Will he . . . Can he . . .”

The doctor smiled benignly and stood up. He was only four years past his residency, but he already knew that there was only so much information a family could take in immediately after hearing a diagnosis of Down syndrome. Much of what he had said today, he would have to repeat again in the coming days. The father still looked shell-shocked. The mother, though, seemed to be handling it pretty well so far. That was encouraging.

“Again, when it comes to Down syndrome and life expectancy, there is a wide range of outcomes. The numbers are rising all the time, however, and there is every reason to hope that your son will live a close-to-normal life span—forty, fifty, even sixty years or more is possible. Something your baby has going in his favor is his heart. About fifty percent of Down syndrome babies are born with heart defects. Obviously that is a worrisome and dangerous condition. But so far at least, Howard's heart appears to be completely normal. You're very lucky.”

Donny, who was looking at the wall again, let out a sound halfway between a laugh and a grunt. Mary Dell shot him a look.

Dr. Tibbets took a business card out of the pocket of his lab coat. “I'll be back to go over the test results. If you have any questions before then, feel free to call me.”

“I will.”

“The biggest hurdle that people with Down syndrome face isn't the syndrome itself but the ignorance of others. The minute you leave here and for the rest of his life, Howard is going to run into people who will tell you what he can't do. Don't you believe it,” he said earnestly, looking Mary Dell squarely in the eye. “And don't you accept it, not for a second. When people tell your son he can't, it's your job to tell him he can and to show him how. You've got to lead by example. You're his mother, Mrs. Bebee. He'll believe you.”