By Jane Clark Summers

By Jane Clark Summers

Daily Journal Corinth Bureau

CORINTH – Medical experts advised against taking her children home. Social workers continually urge her to institutionalize them. But Shelly McLemore is fighting against the system and the odds as she cares for her two children born with cerebral palsy.

The chances of having two children with the disorder were very slim, McLemore was told before her daughter was born with the same disorder as her firstborn, a son. Jessica, now 4, was born one day before her brother Tyler’s first birthday.

Cerebral palsy is a term used for various nonprogressive disorders of motor function resulting from brain damage. The cause of most cases is unknown. Damage to the brain occurs before, during, or shortly after birth. The damage ranges from mild to very severe. The McLemore children are very severe.

Typical days not typical

McLemore, 28, was warned that caring for the children would put a strain on her marriage and that it would be best for the babies if they were placed in an institution. But the young mother could not give up her children.

Now divorced for two years, she continues to struggle to keep them at home. Tyler, who has a reflux condition and seizures, has to be fed through a feeding tube every few hours. Jessica, who is still on a bottle, has to be on oxygen 24 hours a day.

Weighing only 23 pounds, Jess is the size of a 2-year-old. Her size is probably the only reason she is still alive. She was born with a defective heart. A central shunt put in her heart when she was 2 weeks old was expected to last until she was 8 months old.

Because of her weakened condition, she could not have another surgery to replace the shunt. She lived beyond doctors’ expectations with the loving care of her mother, family and nurses.

A hyperactive child, Jess sleeps no more than five hours in a 24-hour period and no more than one or two hours at a time. Because too much agitation could cause her heart to go into arrest, Jess must be entertained constantly.

Videos of Richard Simmons keep her occupied for hours. When she feels good, she waves her arms as the guru of diet and exercise dances on the screen to disco favorites.

Neither of the children can speak, although Jess does make sounds as if she is trying to say, “Hi.” McLemore’s dream is that her daughter can someday call out to her.

“It would be the best thing I ever heard to hear her say, Mama,'” McLemore said. In her few moments of sleep, she often dreams that Tyler is running around the house.

The fact that Jess is terminally ill keeps McLemore from ever sleeping deeply. “I am afraid to go to sleep, afraid that I won’t hear her cry,” she said. She checks on Jess constantly to make sure that the oxygen tube hasn’t been pulled out.

Tyler could live to be an old man, doctors told McLemore. But when he gets larger and if Jess lives to be a teen-ager, taking care of the children will be more difficult, the slender-built blonde realizes.

Coping financially

The children receive Social Security Supplemental Income and Medicaid support. The government supplies nursing care eight hours a day and four nights a week for Jess to give the mother some relief. Doctors recommended 24-hour nursing care.

McLemore admits she was at the breaking point when she finally got nursing help three years ago. The number of hours was reduced after Tyler was ruled ineligible for nursing care.

The Medicaid case is reviewed every three months and there is a chance that the nursing care could be cut off at any time, she fears. “They are trying to talk me into putting them into an institution that would cost (the government) more,” she said. “They would die without our love.”

Government social workers also urged McLemore to go to work and hire someone to take care of the children, she said. But getting out to work would be a luxury she can’t afford. Not just anyone can keep her kids, she said.

McLemore completed courses and earned an associate degree as a licensed practical nurse at Northeast Community College last year. But she is afraid to take a job because of her obligations to her children. Both require attention throughout the day and night.

Nurses care

“I admire Shelly so much,” said Kathy Hall of Rienzi, a nurse with Dixie Nursing Care. “I have never seen anyone who could handle it the way she does.” Hall has become attached to the children, too. “If I could afford it, I would be here without pay. These kids are special.”

“Most people would have given up a long time ago,” said nurse Linda Nunley of Corinth. “There are not many women Shelly’s age that would put off the things (of life) and sacrifice like she has.”

To cope emotionally, McLemore crochets or does cross-stitching. Many nights at 3 a.m., the young mother is up vacuuming and cleaning her house. If she gets tired and sleepy, she puts on a pot of coffee. She doesn’t eat much and rarely goes out to shop, date or be with friends. “A lot of friends have disappeared,” she said. Most of the time, she said she feels isolated.

There are no support groups in the Corinth area, so McLemore tried to start one after Tyler was born. It would help just to have someone understanding to talk to on the telephone, she said.

Her mother, Sue Walker, is her major supporter. When Tyler was 6 months old, McLemore’s father, Jim Walker, suffered a heart attack while getting the car ready to take the baby to the Memphis hospital. Even though her dad is disabled, “He is good to sit and hold them and love them,” she said.

“We know what it is like to be touched by angels,” her mother said. “Because they are angels.” She is proud of her daughter’s courage and strength. But she grieves for her own child and wonders why. “That will be the first question I ask God when I get to heaven,” Walker said.

McLemore and her children live in a modest but meticulously clean, two-bedroom mobile home near her parent’s house. A handicapped bathroom would help but that is beyond her financial ability. Tyler might enjoy a whirlpool that would also provide therapy for him, she said.

She doesn’t complain or call the children a burden. “They have brought me more happiness than anything ever will,” McLemore said. “I want to keep them forever. I won’t give up hope.”

Click video to hear audio