Rescuing Jonah

Originally published in the Washington Post Magazine: October 25, 1998

The diagnosis was devastating. But locked inside their child's damaged body was a spirit that challenged them to act

Jonah is sipping water from the double-handled cup held by his father, Michael, when he starts to choke. He sputters for a moment, and his eyes half-close. He has slumped a little to his left, although he is propped up in his highchair between two chopped-off cylinders of bright pink Styrofoam. His arms rest passively on his tray as Michael dries his face with a soft cloth. "You forgot to tell your throat you were swallowing," says his mother, Margie. "Say, `I'm swallowing, throat! Help me out, tongue!' "

Michael asks Jonah, who is almost 4, if he wants to take a break from breakfast. Margie, who is deep in the throes of first-trimester morning sickness, is wolfing down a bowl of cornflakes with single-minded purpose, chasing it with a Diet Pepsi. But she stops for a moment to point out that Jonah has eaten only two bites of scrambled egg, and that it most certainly is not time for a break.

Distracted from his egg, Jonah correctly identifies several of the magnetic letters on his tray table. Margie quizzes him about what he learned for Father's Day.

"D-a-d-d-y!" he spells aloud in a breathless, fluttering voice.

"J-o-n-a-h!" he then offers in a whispery croon, grinning from ear to ear.

A moment later Michael delivers another small forkful of egg to Jonah's mouth and suddenly Jonah begins to choke again. It's okay, Margie tells him. Put your head down. Margie tells Jonah to remind his tummy to "go the right way." No one is panicking; they have all been through this many times before. Jonah recovers and Michael uses the cloth again to gently wipe egg bits off his chin.

Michael and Jonah end up sharing the egg in the old one-bite-for-you-one-bite-for-me routine. By the time they are done, some 35 minutes have passed, and Jonah has eaten about a third of an egg.

Cerebral palsy is an umbrella term for a broad range of neurological disorders and brain damage caused by oxygen deprivation occurring in utero or within the first year of life. The damaged nervous system typically causes stiff, awkward movements, affecting some or all limbs. A child with CP might have some degree of mental retardation, seizures or abnormalities in breathing, swallowing and sucking. The range of disabilities is enormous.

In Jonah's case the damage done to his brain seems to have occurred in the womb during the first three months of Margie's pregnancy as a result of an undetected infection. Jonah's class of disability, which affects all four of his limbs, is called mixed spastic quadriplegia. He is "floppy" -- poor muscle tone and control -- and when he tries to move his muscles, his movement becomes spastic and his limbs overshoot the mark. He cannot walk, sit or roll unassisted, his voice is very soft and

His brain is normal; his body is not.

Jonah is a striking boy. When he smiles, as he often does, a large dimple imprints his right cheek. His large ears frame a delicate face; his enormous eyes are sage green with the lashes of a llama. At an airport once, Margie counted 57 people who commented on those eyes. After hearing all the remarks, Jonah used to wake up in the morning and say, "Hi, Mom. Beautiful eyes," as if it were part of a normal greeting.

Margie and Michael are painfully aware that much of a young child's perception of the world rests on the discovery of how to move through it physically. Where the mind goes, the body follows, and the two are so thoroughly integrated that even laughter and tears are expressed from head to toe.

At the park, Margie and Michael see typical children play hide-and-seek, slide and swing, pilfer buckets and shovels from other kids and then become inconsolable when the items have to be returned. Most children have the luxury of gallivanting carelessly through the world, their minds and bodies working together to interpret and express. Most parents have the luxury of letting them have experiences on their own.

But Margie and Michael have a child whose mind and body are at odds. One who relies on his parents to bring the world to him. They watch as he struggles to use the limbs that misinterpret his commands. Each night they go to sleep wondering: How can a parent go about rescuing a child like Jonah?

Jonah began life in crisis. He was in the neonatal intensive care unit at Arlington Hospital for his first two weeks because he threw up constantly. At 4 months, his pediatrician told Margie and Michael that Jonah had certain developmental and physical delays. It was because of this early, careful observation that they began taking Jonah to a physical therapist. No one spoke of cerebral palsy, until Michael's mother mentioned the term.

Margie learned later that many neurologists refuse to diagnose cerebral palsy before 12 months, preferring to hedge their bets; there is a certain percentage of early motor function difficulties that children simply outgrow. There is also a minefield of potential psychological repercussions when a disease like CP is diagnosed. Parents often go through a period of mourning in which they grieve for the able-bodied child that will never be.

Margie and Michael questioned their neurologist about cerebral palsy when Jonah was 10 months old. The neurologist said, "Let's not think about that at this point."

Feeling shut out and frustrated, Margie shared her feelings with Jonah's physical therapist in Arlington, where they live. She suggested that Margie look in the clinic's library. They walked over to the bookshelf. Margie was aware that protocol dictates that a physical therapist cannot name a suspected disorder until a doctor has made the final diagnosis. So she began reading aloud the subjects of the books on the shelves in front of her:

Autism. Brain Injury. Cerebral Palsy. Down Syndrome.

"Let's go back one," the therapist said quietly.

Later, after reading 37 pages, Margie handed the book to Michael, crying. It described every symptom, every single thing they'd been through in the past 10 months. The next day they returned to the physical therapist and Margie said, "Jonah has CP."

"Of course he does," the therapist said.

Margie LeVant is a petite, pretty woman in her mid-thirties. Before Jonah was born she worked as an environmental consultant for nonprofit organizations. She and Michael Gilman, who is a tax lawyer, have been married for five years. Her effervescent cuteness is tempered by a quick mind and a tenacious energy. She laughs easily, but does not suffer fools lightly. Fiercely loyal to her friends, Margie would make a formidable enemy.

Margie is an optimist and an activist. She sees the glass half full. The first physical therapy sessions with Jonah fell upon Margie, enabling her to see earlier and more clearly Jonah's limitations. When Michael attended, he felt terribly depressed afterward. There was very little Jonah could do for himself, and no way of predicting how able he might become later in life, or how dependent he might remain.

The first two years of Jonah's life were hard ones. He threw up so much that he simply stopped eating. Margie and Michael were forced to have a gastrostomy tube put directly into his stomach to feed him. They spent two years in family therapy with Jonah to get him to resume eating. Their psychiatrist at Children's Hospital in Washington finally diagnosed Jonah as suffering from "post and current traumatic stress syndrome." When faced with the choice between breathing and eating, Jonah opted to breathe.

Many children with cerebral palsy are nonverbal. Many have little control over their facial muscles, and many are intellectually impaired. But from very early on, Margie was almost certain that Jonah was not. His perceptiveness became clear to her when Margie was getting dressed one morning and temporarily put on one of Michael's shirts. From the bed where Jonah was lying, there suddenly came giggles, and then uncontrollable, tiny fits of laughter. It took several minutes for Margie to determine the cause. She finally realized that Jonah thought it was a riot that Mommy was wearing Daddy's shirt. Jonah was only 14 months old at the time.

Perseverance and pushing toward independence for their son became a common theme in their household. Jonah was not coddled or permitted to wallow in self-pity. Margie and Michael set high standards as well for those who worked with Jonah. At his preschool at Jamestown Elementary School, Jonah's teachers told Margie they wanted him to use adaptive communication technology (including augmented voice boxes equipped with buttons that activate prerecorded words) at the age of 2. Margie flatly refused. She told them she felt that if Jonah needed to say something, and people couldn't understand him, he could work harder to make himself clear. He didn't need to push a button that said, "I want a cracker."

She fought that battle and won.

Two years ago, a chance meeting was to test Margie and Michael's commitment to self-sufficiency for their child and provide a focus for all of their hopes. It was right before Jo-nah's second birthday, and he had just been fitted for ankle-foot orthotics. These braces force the foot flat and perpendicular to the leg so a child can more easily position his center of gravity for walking. Jonah and Margie were at Tysons Corner, trying out the braces in the mall, when Margie spotted a boy, 7 or 8 years old, walking with AFOs. She asked the boy's mother if he had CP, and if she might introduce Jonah to him. It was important, she thought, that Jonah see a big boy with cerebral palsy who walked.

As the two mothers spoke, the woman, whose name was Lynne Carr, asked Margie if she had heard of "conductive edu-cation." Margie laughs, remembering exactly what Lynne said: "If I had a 2-year-old with CP, I would go straight to Hungary."

Margie thought Lynne meant straight to hell, that if she had to start over again with a 2-year-old, she'd leap off a cliff.

In fact, Lynne meant Budapest.

Conductive education is an intensive method of teaching children with motor disabilities that was developed by Hungarian researcher Andras Peto in the 1940s. The technique is now carried on at the Peto Institute in Budapest. The results have been successful enough to spark interest around the world, resulting in the formation of conductive education centers in several countries. There are many overlaps between conductive ed and traditional physical therapy, but one big difference is that physical therapy is often administered to kids with cerebral palsy in one-hour sessions a few times a week. Conductive ed classes, by contrast, meet every day for several hours at a time, in five- to eight-week sessions. Not one moment is idle. The sessions are intensive, relentless and demanding.

The primary goal of conductive education is to allow the child to become competent in daily activities such as dressing, eating and maintaining personal hygiene. Movements taught in class are not just practiced in order to strengthen unused muscles, but apply directly to daily living, such as reaching for an object or putting on a shirt. Teachers coax the children to stretch, sit up, pull up, roll over and walk. They often use peer pressure to motivate children to be competitive and try harder to move their bodies as they are taught.

Although conductive ed is relatively new in the United States, it is gaining acceptance. Lynne Carr was involved with a group of parents who took it upon themselves to bring out Peto-trained "conductors" from Budapest. A new session was just starting. There was space for one more child of Jonah's age. Margie and Michael decided it was worth the $1,000 fee and enrolled Jonah.

At the first class Jonah sat at a table, with Margie supporting him, and listened to every word the conductor said. He was the only verbal child in the group. At the end of each class, Margie and Jonah would struggle to the car, and cry all the way home from exhaustion. It was, she recalls, like boot camp. But by the end of four grueling weeks, Jonah was able to stand, with help, for the first time in his life.

Seeing the strides Jonah had made, Margie wondered why the sessions weren't available full time. Lynne explained that to organize the whole curriculum and wade through all the red tape of setting themselves up as an organization would call for someone with boundless motivation and a wholehearted belief in what they were doing.

Someone like Margie.

By October 1996, she had organized parents into a group called the Capitol Association for Conductive Education. The parents obtained their 501(c)(3) tax-exempt status and began fund-raising. In four months they raised $25,000. Margie's parents alone raised $7,000. Even her dentist sent $100. The association began its first courses the following summer, all taught by instructors from the Peto Institute. Twenty children from seven states attended. Before the end of the year the association had received a small grant from United Cerebral Palsy of America, and this year it obtained free office space and a van from Inova Health System.

The controlled, kinetic atmosphere of the conductive education classroom was very trying for Jonah; it is part of his personality to be passive and unmotivated. Margie constantly challenged this passivity and inertia to compel him to progress. She hoped there might come a time when he would stop envisioning himself as a non-walker, when he would decide he wants that ball rolling across the floor. And he wants it first.

At Fairfax Christian Church, a five-week session of conductive education is in progress. Margie looks radiant, the first-trimester nausea having subsided. Her dark auburn hair in a French ponytail, her green jumper just revealing the push of her 16th week, she looks like a young, exuberant girl. Jonah is lying on a plinth -- the low, slatted wooden platform on which the children perform many of their tasks. There are five children in this class. The group conductor, Csilla, is teaching the children to lie flat and straight. Jo-nah's teenage assistant is encouraging him to do the exercise. Only his head and shoulders are visible from behind the next plinth, but he looks around with his penetrating green eyes and begins to giggle.

Music is used in every aspect of the teaching. Songs are sung by the conductors and the children during each exercise, music and movement integrating until they become one in the child's mind. If Jonah is slouching at home, Margie can sing a piece of the song and Jonah will try to straighten himself on cue.

Csilla begins the series of movements that will have all the children roll over, straighten their legs and raise their arms from a supine position.

I'm Jonah, I'm lying straight.

1-2-3-4-5.

I'm Jonah, I'm lying straight.

Jonah begins to cry quiet, high-pitched sobs, as he turns away toward the wall. His assistant soothes him. "Up," he tells her. She holds him, calms him. He is ready to go again.

After much hard work and a lot of encouragement, Jonah and his classmates are sitting on the ends of their plinths. Jonah's assistant rewards him with congratulations and kisses. But there is more work to do.

If you're happy and you know it, stamp your feet.

If you're happy and you know it, clap your hands . . .

Csilla stands behind Jonah and concentrates on him. Keep your weight on your feet, Jonah. Stand tall. Stand tall. Keep your head in the middle. Crouch down. Jonah's face is taut with concentration as his arms struggle to support his delicate hands laced around the rungs of the ladder-back chair in front of him.

It's lunch time. Jonah still has to eat baby food. An assistant, the same young woman who comforted him earlier, places the spoon in his hand and helps him guide it to his mouth. Jonah takes his time before he decides to cooperate. Margie comes in and reminds him to say "Ahh" and to tuck his chin. There is an edge to her voice. She needs him to eat. A few moments later, Jonah whispers "Ahh" for the poised, loaded spoon.

When he has eaten enough, he is placed on the floor next to the assistant. Jonah lies quietly for a time, then smiles slowly and begins to tickle her by moving his whole hand under her bare foot. She tells him that in order to tickle properly, he must wiggle his fingers. He does. She laughs. Everything here is a lesson.

After a breakthrough with a psychiatrist at Children's Hospital, Jonah began to eat like an average 2-year-old. His parents had to supplement his food with a heavily fortified formula, and he still had to be fed through the gastrostomy tube at night. Margie told Jonah that when he turned 4 over the summer, they were going to take out his "button" and he would have to eat like a big boy. They felt he was old enough to take responsibility for his body. Margie knew Jonah hated the button. It was

Margie was willing to take the chance of dropping his nutritional intake, even though Jonah was still not on the charts for body weight. Her hope was that if he felt that he was mature enough not to need the tube anymore, he'd be willing to cross over that psychological line and take more food orally.

Soon, however, this plan had to be abandoned. Jonah was still receiving two-thirds of his nutrition through the tube at night, and to remove it would have taken away his primary source of calories.

Margie took the disappointment in stride. Speaking with the gastroenterologist, she and Michael discovered that although Jonah was not even on the height and weight charts for a typical child, he was solidly in the 50th percentile of children with cerebral palsy. For the first time in Jonah's life, the doctor said that if he just kept growing the way he was now, it would be sufficient. After years of being told Jonah was too thin, that they had to do better, Margie and Michael finally felt that their efforts to feed their son had been rewarded.

Jonah's gossamer voice flutters into the kitchen from the porch where he and Michael are having lunch. The door between the porch and the sunny, high-ceilinged kitchen is slightly ajar.

"Open the door, Daddy!" From the kitchen window, the top of Jonah's head and his magnificent eyes are just visible as he sits in his highchair.

Margie's eyes dart up from the kitchen table at the sound of Jonah's voice. She beams and waves vigorously through the old-fashioned paned-glass window that looks out onto the porch.

"Jonah! Jonah! Can you see me in the window? Hi! I'm waving at you, do you see me?"

Jonah's face turns but he cannot quite seem to find the source of the sound. His head lolls back a little as he tries to follow his mother's voice. Mouth open, a slight smile blossoming, his eyes languidly search for her.

Margie knocks sharply on the window. "Jonah! Hi! Mommy's here! Put your chin down please. Thank you."

Margie is trying to beat the ever-ticking clock. There are a mere two years, maybe three, left before kindergarten, or even first grade. She and Michael are hoping to have Jonah enter regular public school with his neighbors of the same age, and there is so much he must learn before then. He will need confidence if he is to connect with mainstream life at school.

For now Margie's primary concern is that Jonah be independent in his toilet training by the time he goes to public school. She knows this is an almost unimaginable leap, but she also knows that for a 6-year-old this would be an enormous boon. She is also hopeful that he might, by then, be able to feed himself, but knows that goal may still be out of reach. He will probably need to have an assistant at lunch time.

As for things that Jonah might need in the future -- a keyboard, a wheelchair, an assistant -- his parents count on Jonah to provide the answer. Margie believes a realistic scenario is that Jonah will say to himself, "I worked really hard on this for years and I could walk in class, but it's just not worth the energy, so I choose the chair." She wants him to make the choice.

A glass half full. Margie seems somewhat baffled when people express sorrow or, worse yet, pity about her family's situation. When they took Jonah to the hospital and he was about a year old, she recalls, they were sitting in the waiting room with a family who had just learned that their 8-year-old daughter was in the final stages of liver cancer and wasn't leaving the hospital. By comparison, Jonah's problems seemed like just a hitch -- not a tragedy.

Margie and Michael believe Jonah will have much to offer the baby brother to come, that the role of big brother will be exciting, rewarding and at times infuriating. They also believe it will be good for Jonah to share their attentions with another. It is also, inevitably, another push for Jonah toward independence. He will have to learn to reach for things, to entertain himself, to move his body to get where he wants to go.

There are many unknowns ahead. Like other children with cerebral palsy, Jonah is more likely to develop respiratory problems, has an increased risk of seizure disorders and is more prone to certain infections. But Margie knows that each case of cerebral palsy is unique and most statistical projections are unreliable.

Margie and Michael are well aware of the fact that the healthiest person is not always the happiest. Rather, it is the one who feels the best about himself and feels the most loved. They know they cannot cure Jonah nor control how healthy he is. But they can care for him, cultivate his independence and nurture his pride. And they can make him feel loved. That's their way of reaching their son, of giving him a good life.

R.C. Barajas last wrote for the Magazine in April. 

Here is the sad addendum to this story:

A Mother's Crusade Ended by Her Death 

Woman Fought to Help Son, Others With Cerebral Palsy 

David Montgomery, Washington Post Staff Writer

October 28, 1998

By Saturday morning, the years of pain and faith and hard work were starting to pay off for Margie LeVant. Her 4-year-old son, Jonah, who has cerebral palsy, seemed to be responding well to an innovative therapy. The organization she helped found to treat disabled children like Jonah was a week away from launching a full-time program. In a few hours, The Washington Post would publish an inspiring magazine story about her family's travails and her own tough optimism. And LeVant was going into labor with her second boy. 

Then something went terribly wrong, something so medically freakish that it happens to maybe one in 80,000 pregnant women. While LeVant was in bed in her Arlington home early Saturday morning, some of her amniotic fluid seeped into her bloodstream. It caused a reaction that shut down her body's ability to process oxygen, then it stopped her heart.

LeVant died almost immediately. 

Her baby boy was delivered in the emergency room, but he had gone without oxygen for 45 minutes, and he was severely brain damaged. Samuel LeVant Gilman, who lived 36 hours, will be buried today, next to his mother, who was buried Monday. 

The title of the story published Sunday in The Washington Post Magazine was "Rescuing Jonah." It was about Samuel's brother, Jonah; his mother; and his father, Michael Gilman -- an ordinary family who set an extraordinary example, according to those who have known them. They persevered in the private, daily grind of dealing with disability and joined a public crusade to promote a cutting-edge treatment program. And the person at the center of the story, the person leading the fight to give their son an independent and good life, was Margie.

Now her friends and relatives, once both dazzled and warmed by LeVant's energy, are trying to imagine life without her. In the process, they are confronting a question as old as grief: If the universe is a sane and ordered place, how can fate be so cruel? 

Yesterday, in an anguished, broken voice, Gilman described what it would be like as a single parent to raise a son with special needs.

"I'm not so concerned about the work," he said. "I'm concerned about the -- I can't be the parent that she was. That's lost forever."

Margie's father, Howard LeVant, of Rochester, N.Y., said his emotions ranged from "unprintable" anger at the way things turned out to a vulnerable need to reach out for support. "What we are doing is holding on to each other, emotionally and physically," he said. "People are flying in from all over."

"You can't explain this," said Lynne Carr, of Fairfax County, whose 11-year-old son has cerebral palsy and who met LeVant as part of an activist group of parents seeking the latest therapies. "It's such a tragedy. . . . Just like my son has cerebral palsy. I don't blame God. But God can help you to deal with it." 

The day after his mother died, Jonah -- who has a fluttering, musical voice and big green eyes -- tried to call her on his toy telephone. The boy's mind is as sharp as any 4-year-old's, but his body won't cooperate, leaving him with poor muscle control in all four of his limbs. Soon after Jonah's mother died, his father had frankly told him the truth. She was gone. 

"Tell me again what happened to Mommy," Jonah said the next day.

Patiently and gently, Gilman told the boy again of death, of the physical disappearance of his mother. In the meantime, Jonah has been distracted from his loss with the sudden appearance of so many relatives in the house.

LeVant was a petite and pretty woman in her mid-thirties, an optimist and an activist, according to the magazine profile by freelance writer R.C. Barajas, who spent months with the family, chronicling how they painstakingly and lovingly met the challenges of raising Jonah. LeVant and Gilman, a tax lawyer, were married for five years. She was an environmental consultant for nonprofit organizations before Jonah was born. 

LeVant was possessed of an apparently bottomless source of energy and enthusiasm, her friends say. Many among the 400 who attended her funeral chuckled fondly during a eulogy by friend Kelly Scarborough, who observed of LeVant: "She could take 25 phone calls, plan a fund-raiser, build a rabbit hutch, get Jonah off to school, design a pair of earrings, and stencil her kitchen before I could even brush my teeth in the morning!" 

Doctors believe that Jonah's cerebral palsy stems from a lack of oxygen during his first few months in the womb, probably the result of an undetected infection. For the first two years of his life, he threw up almost every time he ate, and even now meals remain an ordeal. But LeVant and Gilman resolved that he would grow up to live as independently as possible. 

When Jonah was about 2, LeVant and Jonah chanced to meet Carr and her son Jason at a Tysons Corner mall. LeVant introduced herself, and in no time, Carr was telling her of a promising therapy that was being pioneered in Budapest.

It is called conductive education, a form of intensive rehabilitation for children with motor difficulties such as cerebral palsy. The method was just beginning to gain prominence in the United States, but Lynne and Gary Carr were among a few local parents who knew of it. They were involved in finding instructors for short conductive education courses in the Washington area. 

What was missing was a formal, full-time organization, with legal charitable status. Enter Margie LeVant. "I think everyone was intimidated by the concept of turning this into an organization, except Margie," Gary Carr said. The Capital Association for Conductive Education was formed. Next week, after many months of part-time, ad- hoc classes for about 30 children, it will begin operations with office space and regularly scheduled classes. The association is planning a lasting tribute in LeVant's memory, possibly a scholarship in her name for a child with cerebral palsy whose parents cannot afford the classes. 

LeVant and Gilman thought carefully about having a second child. They sought medical advice on whether there was any chance another baby might be somehow prone to having cerebral palsy as well. "We had some assurance that we had as good a shot as anyone to have a healthy baby," Gilman said. "We felt like Jonah would be a good sibling, and it would be good for him to have a sibling."

But LeVant's pregnancy wasn't easy. Her doctors at Arlington Hospital prescribed bed rest because she had signs of going into premature labor, according to her family. She was allowed back on her feet only recently. Early Saturday morning, she told her husband that her water had broken. He left the bedroom momentarily, and when he came back, he could tell she was stricken, unable to communicate. "She was dying," Gilman said. Doctors call the attack an "amniotic fluid embolism." The odds of it happening are between one in 8,000 and one in 80,000 pregnancies, said Susanne Bathgate, assistant professor of obstetrics and gynecology at George Washington University, citing standard medical studies.

Jonah is hanging in there. "He's a remarkable little boy," his father said. And friends and relatives say they are coming to believe that LeVant's light and energy will persist, despite her absence.

"A lot of children have benefited from her work," Lynne Carr said, "and will continue to do so."

And two years after this story was published, I was given the opportunity to check in with Michael and Jonah.