A Mother’s Love
A single mother struggles to keep her profoundly challenged son out of nursing homes
© 2011 Robin Nelson All Rights Reserved
“He’s in there, I know it,” Essie Evans said, gently stroking her son’s cheek. Tears welled up in her eyes for a moment before she took a breath and pulled herself together. Feeling sorry for herself or her profoundly disabled 16-year-old son, Cornelius, would accomplish nothing.
She leaned over and kissed his forehead. ”He knows my voice. He knows I’m here and he knows he’s loved,” she said. “I made a promise to take care of my ‘Fudge’ as long as I’m breathing. I couldn’t bring myself to put him in a nursing home. They wouldn’t know him. He wouldn’t get the care he needs. He needs to be with people who love him. No, I couldn’t do that.”
Cornelius lay in a recliner chair wedged between the living and dining rooms of Essie’s cramped mobile home. Unable to speak or move, his eyes seemed to stare at something far in the distance. One day is much like another here, except for the weather. A tired air conditioner clunked and hummed from a kitchen window. Birds chirped from trees outside. A dusty pickup truck rumbled down the red dirt road that separates Essie’s home from a vacant farm field. Essie’s handful of neighbors along the dirt road keep pretty much to their own business.
Essie busied herself changing the sheets on the hospital bed that nearly filled her son’s tiny bedroom at the end of the hall. It was just Essie and Cornelius for a few hours more until her older son Morris would come by after his day job. Morris would help Essie move Cornelius to his room for the night. He would also stay to keep watch on his brother so that Essie could sleep for a few hours.
“I knew something wasn’t right three weeks after he was born,” Essie reflected. “Fudge was my third child. He didn’t really cry like my first babies, it was more of a high-pitched whine. He just lay there and didn’t move. My friends said I was lucky to have such a good baby, but I knew something was wrong.”
Like many small towns in south Georgia, Donalsonville has several family practice physicians who provide routine medical care, but trauma and serious illness care is sparse. Specialists are few and far between, often hours away.
“By the time he was three months old, he’d shake and quiver. His lips would turn black. He couldn’t tolerate milk and he started passing blood. I took him to a big hospital in Florida but the doctors couldn’t find anything wrong, They said I was being overprotective and overconcerned. They told me, ‘There’s nothing wrong with this child.’ But I knew different,” she said.
On their way back from Florida, Essie watched as Cornelius had several grand mal seizures. When they finally returned home, her local doctor suggested she take Cornelius to see specialists in Atlanta.
After a week of tests in an Atlanta children’s hospital, doctors diagnosed him with mitochondrial myopathy, a genetic disorder that affects the whole body. ”They sent us home and said, ‘just leave him be,’ as there wasn’t much they could do,” she explained. ”They said he would eventually go blind and deaf and develop heart problems. They said his organs would eventually shut down.”
In time, Cornelius learned to crawl and roll over. By age three, he was sitting up and trying to walk. Though he couldn’t speak words, he made sounds as he tried to express himself.
“He would get all excited when he was in his feeder seat. He would clap his hands and say, “ah-yah-yah-yah” and bang his spoon on the tray when he heard the blender going. He knew that meant it was time to eat, and he could used that spoon to eat,” she said.
“Cornelius played with balls and a teddy bear. He flapped his arms and laughed. He was content and happy. He was alive,” Essie said. She enrolled him in a pre-K nursery school, hopeful that maybe the doctors were mistaken.
As Cornelius turned five, however, doctors were certain that he suffered from a form of mitochondrial encephalomyopathy. “They said it was like he had dozens of little strokes all the time. He was never going to get better. He would never talk or be able to care for himself.”
By the time Cornelius was twelve, his father had filed for divorce and moved away. Essie and her two older children were left to care for Cornelius. “He couldn’t deal with Fudge’s disability. It embarrassed him. He doesn’t have anything to do with his son. He really hasn’t been in Cornelius’ life for a long time,” she said.
Two years ago, in an surgical attempt to repair Cornelius’ spine problems, Cornelius was given a bone graft and a metal rod in his back that unexpectedly caused a massive infection beneath the stitches. “He had a temperature of 105. We almost lost him,”she said. Whether it was damage from the resulting high fever or the progressive nature of the disease, Cornelius’ condition soon deteriorated.
The claps and “yah-yahs” disappeared. He can no longer hold his head up. He laughter has been replaced by heavy breathing and grunts, except for an occasional grin when Essie hugs or tickles him.
Cornelius is now on an electric pump that regularly forces liquid nutrients through a tube directly into his stomach. He requires round-the-clock care to turn him every few hours, administer his medications, change his diapers and bathe his limp, 101-pound body. When he needs to see his doctor, Essie and Cornelius make the four-hour trip with the help of a state-supplied van and driver. After the visit, they load Cornelius back into the van for the long drive back to southwest Georgia.
“I had him in a nursing home for a little while. Then I saw the bruises and scratches on his body that could only have come from someone being rough while moving him. I decided then and there that he needed to be home with me. He needed to be with people who love him.”
Now on disability herself, Essie somehow manages to keep the bills paid. She has asked state Medicaid officials for help in caring for her son at home, but it is a continuing, uphill battle.
“There’s Medicaid funds available to pay for someone to come in and help me, except there’s nobody who’s willing to do it where we are. I can’t find anyone to help care for him. The local providers say they don’t have the staff. They paid Morris for a while, then they said they couldn’t continue to pay family members to care for Cornelius. But if he were in a 24/7 facility it would cost a lot more than what I’m asking.
“So I do it. Every morning I feed him breakfast through his tube, change his diaper, drain his urine bag, give him a sponge bath, brush his teeth and suction his mouth. A few times a week I manage to lift him into his seat in the tub and give him a real bath, but that’s hard to do. Then I’ll get him in clean clothes and clean his room.
“It’s a struggle to get him in and out of his wheelchair — sometimes I have help and sometimes I don’t. I take him outside if it’s nice weather. We’ll sit under the tree and I’ll read to him. I talk to him throughout the day. I rub his hands and try to stimulate his senses. Sometimes I’ll sing to him.
“When my daughter or older son comes over they’ll watch him so I can take a nap. But not for too long. Cornelius is my responsibility. It’s not their responsibility to take care of him. I want them to have a life.
“If he was in a nursing home I know he wouldn’t get the care he needs. He would just be another person who can’t speak up for himself, stuck in a warehouse and left alone to lie in his feces for hours. No stimulation, no words of love or kindness. I’ve seen it. I know.
“Fudge could live to be fifty, I don’t know what to expect. I just take it one day at a time. Sometimes it’s overwhelming. There are times I’ve asked God to take him so he’s not in pain.
“It gets lonely here. My sister helps when she can and my other kids help here too. We took Cornelius to church with us until he was maybe 11. Our church was mostly older folks, maybe there’s a hundred members.
“Sometimes people would call and offer to help so I could go have some time for myself. But when I’d call to take them up on their offer it was usually, ‘I’ve got something to do, or today’s not a good day, or I got this or I got that.’ I lost faith in people. There have been times when Cornelius was so sick and I really needed someone to talk to, but there wasn’t anybody. It wasn’t that they didn’t care, they just had their lives going on. I can’t take it to heart. I can’t hate.
“But you know, God knows my Cornelius. I know God loves him even more than I do. I put God first and He gives me strength to take care of my son. He could be sleeping and when I come into his room he’ll look up at me. I’ll take his hand and hold it tight. I know he’s in there and he lets me know he hears me. My Fudge brings me joy. It’s a feeling ain’t nobody can pay me enough to give up.”