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Take her home, love her while you can

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POSTED: April 25, 2011 9:37 a.m.

Special-education teachers and caregivers do not get the respect they deserve in most cases. The good teachers and good caregivers provide services that are so important to kids and adults.
I worked with the Liberty County Board of Education for eight years and saw the special-education teachers work with their children. They loved those kids and worked with them with so much patience. I especially remember Mrs. Ann Hopkins.
My sister’s son is in different nursing homes, and I see the care that has to be provided daily and around the clock. All these people deserve a great big thank-you.
If you want me to get on your case, just make fun of a special-needs child or adult in my presence. I will be on you like “white on rice.” The next time you see a special-education teacher or a caregiver at a nursing home, take time to thank them for the important jobs they perform daily.
Also, there are many caregivers who take care of their loved ones at home. I want to share with you, in memory of her birthday, a personal story of a very special child who required 24-hour care.
On the beautiful spring day of April 27, 1961, a very special baby girl was born into our family. We all were old enough to know that a new baby was coming. I was 14 years old. For at least two months before her birth, I had been getting up early in the morning, building a fire in the fireplace and cook stove to cook breakfast for the 10 of us. Uncle Glenn Bacon got a job at Fort Stewart and was staying with us for a short while until his family could move from Florida.
Mama, who was 42 at the time, had the baby at the hospital in Ludowici, attended by Dr. Middleton. This was the first time she had given birth in a hospital. We all were very excited about having a new baby in the family because our last living sister was 8. We hoped for a little brother — there already had been seven girls and only one boy. My sister Hazel liked the character Josh Randall from the television show “Wanted: Dead or Alive” and already had begun embroidering his name on a pillowcase for the new baby.
I remember finding out after school that the baby had been born and it was another girl! When I saw Uncle Glenn driving up in his old, faded green truck, I ran to meet him and tell him the exciting news. He was hesitant to agree with me. I noticed a painful look on his face and asked what was wrong. He already had gone to the hospital and had seen Mama and the baby. The little girl had been born with spina bifida. We never had heard of that. He told us what he knew about it from the doctor and it was not good.
Marilyn Kay was born with spina bifida meningocele, a congenital defect in which one or more vertebrae fails to develop completely, leaving a portion of the spinal cord exposed. A bulging sac about the size of an egg filled with cerebrospinal fluid was protruding from her lower back. She had a severe case of spina bifida. All of her body functions were paralyzed from her waist down. Dr. Middleton advised Mama and Daddy that she would have about six weeks at the longest to live.
Daddy made arrangements with a surgeon, Dr. Quattlebaum in Savannah, to see her. Luther Reddish drove Daddy and the baby to see the doctor for a second opinion. The surgeon told Daddy that he could operate, but the spinal fluid would cause her head to get very large and the chances of her living were very slim. He said her case was too severe and did not suggest an operation.
Both doctors suggested the best thing was to take her home, care for her the best we could and love her for the short time we would have her. Our hearts were broken. Marilyn Kay had to be placed on a soft pillow on her side. We couldn’t pin a diaper on her; it had to be placed between her legs.
She was placed under the care of Dr. Charles Drake of Glennville. Talk about company coming to see us. We had never had so many visitors — all curious to see what this “spina bifida” was. I heard some people say that they did not know how we could stand to dress the growth and take care of her. It was not easy. It was very heartbreaking, but you do what you have to do, one minute at a time and the best you can with what you have for those you love.
We used many jars of petroleum jelly in the next year to cover the growth before placing sterilized gauze bandages over it each day. The growth reminded me of a chicken gizzard. As I carried her on the pillow, I always was scared that I would bump the growth and make it burst. I had to be very careful that I did not stumble as I held her. As she grew, the growth also grew. At her birth, it was the size of a golf ball; at her death, it had grown to the size of a softball.
Many times, I sat in the large rocking chair on the front porch and rocked and sang to her while she lay on top of a pillow. Most of the time, she lay in the living room on top of a small baby crib that had been turned upside down with a quilt placed on top of it.
She grew like a weed. The time period of six weeks hung over our heads like a bomb about to go off. But six weeks passed. Her little teeth came in and developed just like any other kids’ teeth. She learned to talk and laugh. She liked to eat catfish, grits and ice cream, especially chocolate.
The scene is so vivid in my mind of the evening when she was lying on the couch and I came through with a cup of chocolate ice cream. I knelt down beside the couch and fed her about half a cup. She had it smeared all over her beautiful little face. She was laughing and smacking her lips. As I knelt there beside her, I wished I could just pick her up and squeeze her and make her deformity disappear.
Tears flowed down my face as I looked at this precious, innocent, laughing child and knew that she would not be with us much longer — she already had outlived the doctors’ expectations. (I thought this would be easier to type this time after 50 years without tears falling down my face automatically, but I have had to stop and hunt the Kleenex box again! It is still painful.)
Mama, seated on the end of the table, always held Marilyn Kay at mealtimes and fed her from her plate. Joshie Boy, as we had nicknamed her, always was the center of attention. We would talk to her and make her laugh. Mama just had given her a bite of grits when she got tickled and spit the grits right into Daddy’s face.
We watched her daily, hoping and praying that we could see some improvements — maybe, just maybe her little legs would move. But they never moved once.
Some of the Pigott Branch Church members heard that Oral Roberts, the famous television miracle healer, was going to be in Tampa, Fla., for a huge healing crusade. Several family members discussed taking the baby to him and having him pray and heal her. Transportation and travel expenses were provided, and relatives accompanied Mama and Marilyn Kay to Tampa. Garnold Blocker was the chauffeur. Another lady from Ludowici and her special-needs child also went.
They had a “great” experience in the hot Florida sun. A huge tent had been set up and there were thousands of people pushing and shoving under it. Ushers carried around baskets that were overflowing with money.
The visitors had to stand in line “to be healed.” After a long time standing, someone from Oral’s ministry came by and hurriedly patted them on the head and said “God bless you.” They saw Oral Roberts way off in the distance.
“Just think what everyone will say when we come back and the baby is healed,” a lady said before they left for Florida. “Think how many people will be led to believe in the Lord.” Well, they all came back just as they had left but very tired and worn out from the long, hot trip.
On another occasion, Mama had seen a sign for an Indian healer on the outskirts of Glennville. She stopped at the house and took the baby inside. The lady told her she could heal the baby for a fee. To us, that was like going to a goat house looking for wool! Mama told her that she had no money. So the Indian healer told her to come back the next morning and bring her a lot of produce and eggs. Mama returned with the baby the next morning, loaded down with fresh vegetables from the garden and plenty of eggs from our chickens. The Indian healer had several great meals, but Marilyn Kay remained the same.
I believe in prayer and I had prayed many times daily since this precious little angel sister of mine had been born. I did not believe that Oral Roberts or the Indian Healer woman had any more power with God than I had. After all, didn’t she mean so much to me? She did not even exist to these other people. They were there for profit and to prey on people’s emotions and pocketbooks! However, I cannot hold it against my parents for clutching at any straw they could find in hopes of making their little child better.
In the early spring, Mama suggested I take some of my earnings from working in tobacco fields to order a beautiful pink dress for Marilyn Kay from the Sears and Roebuck catalog. I chose a lacy, pink dress with a tiny matching slip and a pair of dainty white booties. Aunt Bessie took her picture in it one time. We did not own a camera, so one photograph was all we ever had made.
April 27, 1962, came around, and she had lived for a whole year! The growth on her back was very large and had to be drained constantly. Dr. Drake came every time we called him from our neighbor’s phone. He knew there was nothing he could do for her, but it was comforting just to know he was there. I recall seeing him sitting on the couch many times with his head bowed in his hands and perhaps calling on a “greater physician” than he was for guidance.
A few days later, Marilyn Kay went to sleep and slept for two days and would not wake up. Dr. Drake arrived and told us that she was in a coma. We sat up all Thursday night and did not go to school Friday. There were several people at our home that night; word had traveled fast that our little angel was very sick. She had a high fever and sweated constantly. Around midnight on May 4, 1962, I was kneeling beside her, holding her hand and keeping the moisture wiped off her face when she opened her blue eyes, smiled at me and went back to sleep — forever. Another little angel had gone to heaven.
Rimes Mortuary was called to come get the body. They returned Saturday evening with the most beautiful (of course no coffin is actually beautiful) coffin I ever had seen. It was soft pink and white and lined with ruffles. A dainty bouquet of tiny pink roses and baby’s breath was pinned on the casket lid. Marilyn Kay was dressed in the pink outfit and booties I had chosen from the catalog a few weeks earlier. She looked like a sleeping doll.
Many people came to visit, and our kitchen was filled with food. It was a custom to sit up with the corpse all night. I was totally worn out. This was the third day I had been going without any sleep. It was May and the weather still was very chilly at night. I had tried to keep the fire going in the wood stove in order to keep the coffee pots full. We did not own an electric coffee pot.
We ran out of stove wood, so I had to find some more. The men had built a large fire outside in the yard and stood around it. Just before daylight, I snuck out to the front porch, curled up on the old settee, covered up with one of Daddy’s big coats and quickly fell asleep. It was not long before someone woke me up to find some more stove wood.
The funeral was held at 3 p.m. Sunday at Pigott Branch Church with the Rev. Marcus Rushing presiding. There were two pallbearers, and a lady sang “Gathering Flowers for the Master’s Bouquet” or some similar title. It was a very appropriate song as this little girl who never had the pleasure of kicking her tiny feet, crawling on the floor or walking a step certainly was a special flower for the Master.
She now could have a brand-new body and hop and skip merrily about in heaven with her sister, Ouida Nell, who had died seven years before. These were two perfect angels uncorrupted by the world as their little life spans were very short on this earth.
Many people came to me in the graveyard and said that she was better off. I knew that was true, but it still did not ease the pain of parting with a child who was nothing but a bundle of love.
Several weeks later, Daddy dreamed that he saw a little girl standing in his bedroom in a white dress. He watched her walk through the doorway and toward the fireplace. Then she disappeared. He told us about the dream and showed us where he saw her standing. There in the linoleum rug, near the fireplace, was an imprint that looked like a tiny baby footprint. Coincidence? I do not know.
Fifty years have passed since the birth of Marilyn Kay. Many changes have occurred in the medical field and much has been learned about spina bifida. Children do survive with it now but usually have to undergo many surgeries over the years. One of our former state representatives was born with it, and he told me that it takes much suffering, endurance, pain, prayers, money and many operations to survive it.
We did what we could at the time with no medical insurance or children’s medical charities to help. No child ever could have received any more love than we gave our little angel, Marilyn Kay! The joyful sound of her laughter and the radiant smile on her face filled our hearts with joy day by day as we took care of her, and her sweet memory will linger with us forever.

 

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