Melonie Smith parks her car at the grocery, hangs a disabled-parking sticker on the rear-view mirror and reaches to pick up her 6-year-old son, Trae.
A group of teenagers watches. One shouts something that leaves Smith feeling as if she has been slapped.
“She has to have a retarded kid to park close,” he yells.
Later, at the checkout counter, Smith sees the teen and confronts him. “What you said to me,” she says, “was really rude.”
This is Smith’s worst fear realized: her son being made an outsider. It is something she has struggled against since Trae was left with cerebral palsy, impaired vision and learning disabilities after being severely shaken by a baby-sitter when he was 11 weeks old.
After doctors told Smith that Trae would die or would live in a vegetative state, her goal was simply that her son survive. Now her mission is that he grow up to live independently.
That’s why Smith, 36, wages constant battles with insurance companies, with doctors and teachers, with rude teenagers, and with her conscience and faith in God.
“One of the hardest issues concerning my son as a survivor is the fact that most agencies only see him as a financial burden, one that is ongoing and a waste of time,” she said.
Anger and worry are her constant companions. But Smith makes sure that Trae doesn’t witness her inner struggles.
“If you’re going to always cry in front of Trae and be angry, that’s all he’s going to know, because you’re all he’s got,” she said. “If I cry in front of him, I tell him it’s because I’m real proud of him.”
At 5:30 a.m., Smith begins her grueling weekday schedule. She showers and then fixes Trae’s breakfast. Then it’s off to kindergarten at a special program at Meadow Creek Elementary School in Bedford. Next stop is her full-time job supervising computer systems at Petrosurance Casualty Co. in Arlington, a Ft. Worth suburb. Lunch breaks are a distant memory. She skips them so she can leave work early to pick up Trae at a child-care center and take him to late-afternoon physical therapy sessions.
She also must find time to take Trae to his medical appointments. He has 13 doctors, including a neurologist, an orthopedic specialist and a gastroenterologist. Not to be forgotten are other therapy classes, including swimming lessons at 7:15 a.m. Tuesdays and Thursdays and equestrian therapy on Saturdays.
She doesn’t trust many people, so she takes Trae almost everywhere she goes, including grocery stores, restaurants, Rangers baseball games and seminars about shaken babies.
“She exposes him to everything, probably more than normal children will get,” said Smith’s mother, Brenda Fetsch, 55, of Waco. “She tirelessly hunts for every kind of therapy and every kind of doctor, not to heal him but to bring him to his greatest potential that he can possibly be.”
Smith, who has been divorced for three years, has no social life. She has little time for a relationship or for meeting friends for a glass of wine after work.
“I work, and I have Trae,” she said.
Her former husband is still part of Trae’s life, but he lives in California.
Life might be easier for Smith if she moved to Waco, where she has a large, loving family. But she insists on staying put, she says, because the Dallas/Ft. Worth area offers the best services for Trae.
In the evenings at their apartment, she makes dinner, plays with Trae, bathes him and goes to bed with him about 9 p.m. Trae can’t sleep unless his hand or foot is touching his mom.
Smith uses the time before she falls asleep to write letters to insurance companies and tend to unfinished business. “I do my battles between 9 and midnight in bed,” she said.
Smith is often consumed with anger that the lanky Trae, who weighs 38 pounds, has to struggle to walk and to talk and is often the subject of stares and jeers.
In his first 11 weeks, Trae was a typical healthy baby. Then, in March 1993, he was shaken so hard that he had to be rushed by helicopter ambulance to Cook Children’s Medical Center in Ft. Worth.
Doctors told Smith and her husband, Bud, that their baby was in pain and was dying. The shaking had left Trae with bleeding in his brain and retinal hemorrhaging, and he was suffering grand mal seizures. He was breathing with the aid of a ventilator.
Smith and her husband decided to take Trae off the ventilator. A family priest from Waco gave Trae the last rites, and paperwork for organ donations was signed. The ventilator was disconnected.
But then Trae gasped for air. His mother and others took it as a sign that he wanted to live.
Smith seethes when she recalls that for three months in 1993, Trae was taken from her because Child Protective Services believed that she or her husband was responsible for his injuries.
“It is one thing to know that your 11-week-old baby could die from shaken baby syndrome, but it is another to have authorities thinking that you are capable of such a deplorable crime upon your very own child,” said Smith, who later co-founded the Ft. Worth-based Shaken Baby Alliance.
Eventually, the baby-sitter acknowledged during a Child Protective Services hearing that she had shaken Trae. When the sitter was not prosecuted, Smith worked to put a case together, gathering documents and affidavits from physicians. But by the time she had finished, the three-year statute of limitations for an injury to a child case had expired, she said.
Friends and relatives have counseled Smith to let go of her anger, but she says she wants to hold on to it because it fuels her fight for her son.
She knows that when one battle with insurance companies is won, another looms. Smith looks for after-hours therapy sessions so she can take Trae after work, but insurance companies won’t pay for them. They turn down coverage for home therapy because “it is a convenience for mom,” she said.
A social worker has suggested that Trae would receive better services if Smith went on welfare and put him on Medicaid, but Smith has rebuffed that idea.
“I would be ahead if I didn’t work,” she said. “But I was raised to get off my butt. People don’t understand why I don’t quit.
“I have a good education. It’s not for everyone else to take care of me.”
Smith said she used to be overly defensive when people stared at her son. She occasionally walked up to them and asked, “Do you have a problem?” Now, she said, she may say something like: “I noticed you watching my son. I’d be happy to answer any questions that you have about him.”
Smith, conscious of the stares, always makes sure that Trae’s hair is styled and that his clothes are pressed, Fetsch said.
“People are going to look at him in public, so if they’re looking at him, he’s going to be spotless and well-groomed,” Fetsch said.
At day care, Trae has been hit, bitten, pushed and called names, Smith said. Last year, she wrote a letter to other parents, describing his history and physical condition.
“I hope this helps each of you to understand Trae better,” she wrote. “Trae has already suffered enough physical abuse. Please help me make his life easier by taking time and talking to your children.”
The children were nicer to Trae after the letter was sent, Smith said
The Rev. Timothy Vaverek of St. Joseph’s Catholic Church in Waco has been a lifeline for Smith, she says.
Vaverek, who administered the last rites to Trae more than six years ago, said Smith’s challenge is to continue to focus on reality. “You have to deal with your own guilt,” he said, “your own sense of what ifs, which could destroy you.”
Smith says that during the past few years, she has had to stop being so protective of Trae.
“When Melonie first came to me and brought him to the classroom, basically what she told me was that I was not to tell Trae no,” said Lori Box, who taught Trae’s preschool class for the disabled. “He needed to learn that there were ground rules.”
Box persuaded Smith to put Trae in child care during the day.
“I think it has helped him to be around peers and have social interaction,” Box said. “He has gained a lot of independence.”
In three years, Trae has progressed from having trouble communicating to being able to say three- and four-word sentences. He also can follow directions with help and now walks up to people and says “Hi,” said Nancy Shadowens, a speech teacher at Bell Manor Elementary.
Valuable help also has come from family members, Smith said.
The weakened facial muscles that make it difficult for Trae to speak also cause him to drool. Smith’s brother, Adam Fetsch, 18, taught Trae to wipe his face on his shirt. Last year, Fetsch led a project with his high school football teammates to increase awareness about the dangers of shaking babies.
Smith’s goal that Trae live independently is not out of the question, said Shadowens, the speech teacher.
“I think miracles happen,” she said. “If he keeps going on the track he is and his family supports him and gets the help, I think it’s very realistic.”
