St. Petersburg Times Online: Floridian

Weather | Sports | Forums | Comics | Classifieds | Calendar | Movies

The eyes have them

What is it like to live with a 5-year-old who cannot walk or talk? Who has never sat up on her own? Whose every breath could be her last? It's a pure joy.

By MIKE WILSON, Times Staff Writer

© St. Petersburg Times, published March 7, 2000


TAMPA -- She was in the living room when she saw the story on the TV news, about the parents who abandoned their son at the hospital with his toys and his clothes and a note saying they could not care for him anymore.

What struck her was the picture of the boy. His face was round, just like Amina's.

That baby looks just like my baby.

But it wasn't just the face that reminded Vanderlyn Williams of her granddaughter. It was the breathing machine and the tube in the boy's neck and the uncomprehending eyes. What she could not see she could imagine: the diapers, the feeding tube in the stomach, the nurses trooping through the house, the therapies, the medications, the seizures, the ambulance rides and resuscitations.

Van Williams felt sorry for the parents on TV and prayed she would never get to that point. The only thing she could not stand was the thought of life without Amina.

* * *

It is difficult to understand why anyone would abandon a child, but it was particularly hard when Richard and Dawn Kelso did it. This newspaper spoke for many when it asked, in a front-page headline, "Why did they do this?"

The couple, who live in Exton, Pa., seemed well-equipped to meet the needs of their 10-year-old son, Steven. Richard was CEO of a chemical manufacturing company and Dawn served on a state advocacy council for the disabled. They had a big house and two BMWs. They had connections.

Therefore, the thinking went, they had no excuse. Authorities charged them with child abandonment and conspiracy. The trial is set for today..

Half a million American families, including 5,000 in Tampa Bay, care for someone with cerebral palsy, the condition that affects Steven Kelso. The effects can be as mild as a slight hampering of motor function, or they can render a person unable to breathe on his own, walk or talk. Steven is like that.

Parents of severely disabled kids will tell you they never would have done what the Kelsos did. And yet they sympathize. If your child has a tracheostomy -- a hole in the throat to help with breathing -- you can't leave the room for fear it will get clogged with mucus and the child will suffocate. A case of the sniffles means suctioning the trake every 15 minutes, day and night.

All this wears a person out. The parents of disabled children often suffer from guilt, isolation, exhaustion, even clinical depression.

The question, then, is not why the Kelsos did what they did. The question is: Why hasn't Van Williams done the same thing?

* * *

Nurse Brenda Jones is dressing Amina in the back bedroom when she hears the front door open. Van, an aide on a school bus for disabled children, is back from the morning run.

"Hey Boo! Hey Booky Boo!" Van says, bustling in. Amina, on her back in the crib, squints and shows her teeth, her version of a smile.

Amina's room is the smallest of the three bedrooms in Van's house. Next to her crib is a briefcase-size machine that pushes air through her trake and into her lungs. There is a color TV for the nurses and a wall calendar for tracking Amina's doctor's appointments.

She has one this morning, for an ear infection. Brenda, one of six nurses who take shifts caring for Amina, has already changed her diaper and fed her breakfast, an 8-ounce can of Pediasure, pumped into her stomach through a tube.

Van says to Brenda, "Did you smell her ear?"

"I smelled it. I couldn't really smell anything."

"You got a sinus problem anyway," Van says.

After working in this home for four years, Brenda knows pretty much all there is to know about Van. She knows about the first husband, who got Van pregnant when she was a teenager. She knows about the second husband, who slapped Van around and got into drugs and still calls to say hello.

She knows about Van's pot-smoking days, about the boyfriends who came and went, about her tell-it-like-it-is personality, about her loneliness and her deep reservoir of hope.

Brenda is part of the family. A while ago, after Amina received steroid injections to shrink a growth on her earlobe, the skin around her ear turned white. Van said Brenda was starting to rub off on her.

"They call me Me-ma," Brenda says. "I'm the second grandma."

Now Me-ma is trying to suction the mucus from Amina's throat, but Van keeps getting in the way.

"I have a baaaaad habit of doing the job for her," Van says.

"She does. She tries to take over," Brenda says.

Van grabs the suction tube, which is not much thicker than kite string.

"Be careful, she just ate," Brenda says.

Van inserts the tube into the trake. The gurgling vacuum device slurps up the loose fluid in Amina's throat. Then Van sticks it in too far, triggering the gag reflex. Amina chokes, coughs, throws up.

"I warned you," Brenda says.

* * *

Time to go to the doctor. Van breaks down Amina's wheelchair and carries it out to her 1981 Volvo. Her neighborhood is a mix of poor and middle-class, black and white, citified and countrified. Somebody started building a big house on the corner but never finished it. Across from the Williams' house, chickens peck at the ground.

On her way back inside, Van passes a skittish black dog -- skittish, she says, because somebody broke into the house where the dog lived and shot it in the snout.

Amina lies in the glow of the big screen TV. Martha Stewart is saying, "True Japanese shoji screens have paper on only one side."

Van sits down, lifts Amina onto her knee. Amina's head slumps downward, its weight defeating the weak muscles of her neck.

"Can I see your face this morning? Can I see your eyes this morning? I'm all the way up here. I'm all the way up here."

This is Van's principal occupation, trying to locate the life inside this child. She wishes she could do more.

Such as?

"Give her my legs to walk, my arms to work, my brain to do whatever she wants to do."

At age 5 years, 7 months, Amina Rooseveletta Williams can do the following things: She can smile. She can laugh, though the sound is strangled, like a cackle. She can take baby food by mouth but doesn't like to. She can pretend to be asleep so you'll stop feeding her. She can make a noise that sounds like "Carla," which is her mother's name. She can roll from her stomach to her back. She can lift her head for a while. And she can use her bunched-up fingers to press the buttons on a pop-up toy.

Van remembers a time when Amina just lay there, so oblivious she didn't even change expression when the doctor gave her a shot.

"To see her hands move -- that's a miracle to me," Van says.

It is a 10-minute drive to the doctor's office. In the examining room, Van sits in a big chair, like a dentist's chair, and holds Amina in her lap.

Van is deep in thought. "The other parents -- did they get their baby back?" She means the Kelsos.

No, she is told, they did not.

"I think they should."

Dr. Janet Seper comes in. Soon the doctor, the nurse, Van and Brenda all have their hands on Amina.

"Amina, I'm just going to put a little Q-tip in your ear, okay? It's not going to hurt," Seper says.

When she inserts a tube to suction the ear, Amina grimaces and wriggles in Van's lap. The grown-ups pin her arms so the doctor can do her job.

Amina begins to cry, except the sound is more like a groan -- the kind of noise you imagine paramedics hear, an anguished sound from beneath the rubble.

When it is over, Van carries Amina into the hallway and cradles her like a baby. "This is the third time I ever heard her cry."

* * *

Back at the house, one of Amina's aunts pays a visit. Her name is Angelion Honor but everybody calls her Cooter. She is 24, the mother of two.

" 'Mina!" she says, kneeling next to the couch where Amina is lying. " 'Mina, give me my smile! Hey, you know who's talking to you. Give me my smile!"

Amina shows her teeth. "She knows my voice," Cooter says.

Amina gets a lot of visitors: her father Roosevelt, better known as Boochie, who has always been a little edgy around Amina but now says, "We've grown on each other." Her mother Carla, Boochie's on-again, off-again companion, who depends on Van so she can work and go to college and take care of her two other children. Her 2-year-old brother Roosevelt Jr., known as Nup-Nup ("noop-noop"), who steals her toys. Her 7-year-old sister Nandi, of whom Van says, "She figures everything's supposed to go Nandi's way or no way at all." Her 13-year-old aunt Sharday, Van's daughter, who takes Amina into the tub with her. Her temporary unofficial sister Tiffany, 9, whom Van took in after her mother went to prison.

"I just pick up all the stray animals," Van says. "Her mom ain't nothing to me but Tiffany needed somewhere to go."

Amina is never lonely but her 47-year-old grandmother often is. Van would like to have a good man, to open doors for her, buy her dinner, "just open their arms out and just know what I'm going through." But she says every man she has known has been like a child so she might as well be with her grandchildren.

"If God sent me a perfect man, I wouldn't know how to act," she says.

Besides, where would he sleep? Nights when Amina doesn't have a nurse, Van rolls the breathing machine into her bedroom and takes her granddaughter into bed with her. Then along will come Sharday, who has slept with Van since she was a baby, and Nandi and Nup-Nup if they're over, and Tiffany too. There they'll sleep, the whole family in a king-size bed.

"A man wouldn't have a chance in my house," Van says.

* * *

Carla Garrett became pregnant with her second child in 1994. She and Boochie Williams already had Nandi, named after the 19th-century queen of Zululand.

Carla was five months pregnant when her water broke. She didn't know why it happened; she was in good health, her drinking days far behind her, she says. She went to Tampa General Hospital and was placed on bed rest.

She was 16 weeks short of full term when her placenta separated from the uterine wall, cutting off oxygen to the baby. This is often a cause of brain damage in newborns and Carla supposes it explains what happened to Amina. Delivered by Caesarean section, she weighed all of 11/2 pounds. The family dressed her in clothes made for a Cabbage Patch doll.

Carla named her after a 16th-century African queen. The name means "a woman as capable as a man."

Amina spent a year in the hospital. During her stay the doctors cut a hole in her neck for a breathing tube and one in her stomach for feedings. She weighed 11 pounds when they pronounced her fit to go home.

Carla considered taking Amina to her apartment in the Ponce de Leon housing project, but Van talked her out of it. She worked fewer hours than Carla and had her own house, so it made sense for her to take in the baby. Through Medicaid, Amina would get medical care and 24-hour nursing help.

Many times that first year, mucus clogged Amina's breathing passage and she turned blue and had to be rushed to the hospital. One of the neighbors, seeing this, assumed Amina must be suffering and asked Van why she didn't just let her die.

"She said Amina's living on somebody else's time," Van says. "That's cold, to me. How does she know what time she's living on?"

* * *

Amina's ear still bothers her a week after the doctor's visit. She won't hold up her head, reach for a toy or smile.

Van is having a hard night too. She still asks, over and over, "Did you have a good day?" She still calls Amina "Grandma's Stinker" and "Silly Willy." But tonight her voice is missing its music.

"She's not even sitting up like a normal nine-month old or year-old baby. But Grandma loves her any old way. ... I think this was my first year feeling disappointed. It's not a disappointment but it's just a feeling in there. ...

"I'm not giving up. But you can tell by my voice, it gets to hurting sometimes."

Earlier today Van yanked the welcome mat from under Boochie, Amina's father. She told him to keep away until he gets a job, starts helping around the house, stays out of trouble. Van has banished him before, for getting arrested (he has been convicted of culpable negligence, battery, DUI and assault on a firefighter) and for taking up with women other than Carla.

"My mom, she's just being a mom," Boochie says later. "She wants me to walk that straight line, and I'm, like, veering off to the right, so she smacks me in the butt to get me going back the right way. And it's working." A few days after his banishment Boochie is back. Van won't let him in the house, so Carla goes outside and takes a picture of him holding Amina.

* * *

On the floor next to the living room couch is a big blue binder containing Amina's medical records. A piece of paper is taped to the cover.

"Amina's Dream List," it says at the top.

And then:

"Complete construction of back of house including handicap bathroom. Shelving & storage area for Amina's equip. & supplies. Lift for lifting Amina up & down. Van w/wheelchair lift. Widen doorways."

A new van? An addition to the house? Van doesn't know how she would afford any of it. Still, a list like this helps. It gives her hope, it reminds her of what is possible.

Sometimes when she plays with her granddaughter she speaks in a little-girl voice, saying the things she imagines Amina is thinking.

I had a good day!

I may be 13 when I crawl, but I'm going to crawl one day.

I do love you, Grandma, but I can't tell you.

© Copyright, St. Petersburg Times. All rights reserved.