Donna’s First Four Years

The earliest memories of my childhood were being with my mom, dad, and sisters all going to church on Sundays and all our holidays were spent going to my grandparents’ house. There were five of us; my parents, my two sisters, and me. Delores was the oldest. Then Donna was born three years later. But she was born three months early, on August 11, 1978. She was diagnosed with Cerebral Palsy at birth and driven by ambulance straight from our hospital to the University of Tennessee Medical Center.

There the doctors and nurses tried to prepare my mother for the worst. My mother blamed herself. She never drank, smoked or took any drugs, yet she blamed herself. You can understand why she blamed herself, her grandmother told her she must have sinned or done something in her past because of Donna’s condition. My great- grandmother was born in the late 1800’s and people from that era, having no rational way of consoling people, sometimes blamed the victim. The only logical thing my mother could think of was that she may have worked too hard.

 My poor mother. The doctors and nurses at the hospital where Donna was delivered were not very empathetic. Donna scarcely weighed two pounds at birth; and some of the staff were “pretty hateful” as my mother put it. They treated her as if Donna’s early birth were her fault. The staff at UT (University of Tennessee) Hospital was much more empathetic about Donna’s situation. The nurses made bonnets and booties since preemie sizes were too big. Because UT hospital was nearly one hundred miles away, my parents could only visit once or twice a week. Nowadays we are fortunate enough to have wonderful organizations to help families; like the Ronald McDonald House. If only there was a place like that back, then. Mom told me only recently that when she went to visit Donna she would cry the whole time. She recalled how the other mothers seemed happy and giggled and talked when they visited their babies. She wished she could enjoy her visits, but she couldn’t. She felt guilty. Guilty for not being able to be there every day, for thinking something she had done caused Donna to be born with CP. On top of all that, there were no hospital counselors to help people understand what to expect, how to deal with this different child, and how to cope with feelings of being to blame.

My parents had an emergency call from the hospital one day. Donna needed to have heart surgery, or she would probably die. Now she had to race back to the hospital and not know if Donna would make it through the surgery. She was in a very emotional state trying to hold it all together and decide on what was best for her fragile new baby. Mom really hit rock bottom during these early months and years.

It was a rainy day in November in 1978, when Mom and Dad brought Donna home. “You will probably have to set an alarm clock to hear her crying,” the nurse had told my parents. When my parents went to bed that night it was clear there was no need for a clock! She woke up every few hours and woke them up, too.

 Mom told me a few years ago that she didn’t even think Donna had Cerebral Palsy. She thought she might be slower at things than other children because she was born three months early. “But when she was four and still couldn’t sit up by herself, I finally realized there was something wrong.” I initially felt bad about Mom being in denial. Four years had gone by before she would even believe Donna even had CP. Mom told me when Donna was born, she had never heard of Cerebral Palsy.

The Mayo Clinic’s definition of Cerebral Palsy states “Cerebral palsy is a disorder of movement, muscle tone or posture that is caused by damage that occurs to the immature, developing brain, most often before birth.” It also states “People with cerebral palsy may have problems swallowing and commonly have eye muscle imbalance, in which the eyes don’t focus on the same object. People with cerebral palsy also may suffer reduced range of motion at various joints of their bodies due to muscle stiffness.”

The doctors did not prepare her or give my parent enough information to know that their child was indeed very special. She would never sit up, walk, talk, or even push herself in her wheelchair. Donna would spend three months in the hospital in Knoxville.

Perhaps being in denial was a good thing for her. Maybe if she realized Donna would never be able to sit up or walk or talk, it would have been too much for her. I think denial sometimes gives us that hope and security we need sometimes. At least it gave her the time to accept that diagnosis and prepare herself to deal with it.

I honestly don’t know how Mom kept everything together during Donna’s first four years. She had my oldest sister to take care of and Donna, who cried incessantly because of her condition and she also pulled her hair out. Mom said Donna just couldn’t get her frustration out. It wasn’t until Donna was four years old and the doctor put her on medication that the crying stopped. That was a load lifted for Mom, yet Donna was in cloth diapers until she was ten, so while there was a load lifted, there were many more loads for Mom to bear. Donna went from screaming and crying to smiling and giggling. Those first years are a testament to both my parents. They didn’t join “support groups,” they didn’t institutionalize their child either. They had it hard, but they never wavered from their belief that Donna was sent to them for a reason and to love and take care of her.

Those first four years were very hard on Donna, too. She got pneumonia every year for the first four years or so. The doctor told my mom that she would most likely outgrow that. She eventually did. She started going to a school for children with disabilities at age six. The Palmer Center is still up and running after more than forty years. She was moved to elementary school when she was around eight.

My earliest memories of Donna were in her orange wheelchair. She was so skinny! Her arms and legs looked like toothpicks. Her legs especially, because she could not walk she had no muscle tone. Her feet were narrow like mine, but short! I was jealous of her dainty feet! She only wore a size five shoe.  She also had long dark blonde hair, while Delores and I had dark hair. Her hair also had perfect ringlets when she was a little girl. I remember Mom putting her hair into a ponytail. Her hair was thick like mine but had the most beautiful curls. It was as if Mom had curled it.  Her eyes were very large and sort of blue-gray. She had a broad face and her mouth was broad. Her smile was so sweet and lovely. Her cheeks always had a rosy glow and she rarely had a blemish on her face. As Donna grew older, she did fill out more in her arms and face, but her legs always remained stick thin. She had long slender fingers like our grandmother, and I think had she been able to straighten her fingers out, rings would have looked beautiful on them.

When Donna got to be a teenager, the top part of her body began to fill out. Her arms were bigger, and she had a lot of muscle tone. She weighed about one hundred thirty pounds at that time. That sounds normal, but when most of that weight is from the waist up and she was like a dead weight. It was very hard to pick her up for about eighteen years. She could never sit up unassisted, so it was a struggle to take her places and lift her up and down.

A Surprise

    When Donna got on her medication and things leveled out Mom had another surprise. She was going to have another baby. Instead of telling her family and friends, she only told my dad. She didn’t want to hear about all the negative things people would say to her. She told me that she worried something would happen again. After she passed the sixth month, she told me she didn’t worry anymore.

   When I was born it was a bit of a surprise because I was a few weeks early. Mom was getting the other girls ready for church. It was also a surprise because two ultrasounds showed I was a bouncing baby boy. (Ultrasounds were quite new then) She had another girl. I was quite pleased that Mom went to the hospital instead of church, or I might have been born at church. Mom had a much easier time when I was born. Donna was taking her medication and, for the most part, had quit pulling her hair out.

When I was born we were living on 1505 Miller Street, in a small two-bedroom house with only one bathroom. There were always neighbor kids for my sister, Delores to play with. Delores shared a room with Donna. I have no idea how she slept because Donna was so loud! She yelled and cried at night. Mom would check in on her and see Delores sleeping. When I came along there was no room for me in Mom and Dad’s room or Delores and Donna’s room, so I slept in a baby bed in the kitchen. When I was about a year-old Mom and Dad put the Miller Street house up for sale and built the home they live in today. My parents were very blessed when they built their home. They bought the lot from Mom’s uncle, and my grandfather, my uncle and my Dad worked on the house. My grandpa was a preacher who knew a lot of people who worked for very little. It was kind of a labor of love to help my parents. My dad worked at Sears in the receiving department, loading and unloading packages and trucks all day. Dad was not a large man either and his job was very physically demanding. Dad also served in the National Guard then.  He retired from the National Guard after almost forty years’ service. He retired from Sears with exactly forty years in. Even though we didn’t have a lot of money, we had everything we needed. We didn’t get many extras, but there is a lot to be said for having just enough. My parents borrowed a little money and sold the Miller Street house. They paid off their new home in only three or four years! That really is amazing because the home was built in a nice neighborhood. (There weren’t many other houses built in that area at the time) The house has three bedrooms, two bathrooms, and a two- car garage. It is a beautiful home, with no mortgage, and no car payments. That’s how we got by. We were also very blessed.

Donna had her own room in the new house. Delores and I shared a room for about seven years, until we made the downstairs den a bedroom for her. Delores and I did not like sharing a room at all. Even though we fought a lot and hated sharing a room, we’d gladly share than to sleep in Donna’s room! Donna kept us up all night many nights, hollering, or snoring, or throwing a fit. Yes, sharing a room was okay by us! I remember we had twin beds for a long time with blue satin comforters. Mom never let us pick out childish or teenage themed bedding and I will probably be the same with my son. Donna got the cutest bedding Mom thought we could afford. Only she couldn’t afford it. She would charge it and Dad would hit the roof. Delores and I never cared that she got nicer bedding or her own room. She was special and deserved it.

The Norm

As a child I never thought of our family as different. I never thought any different of Donna. Mom took great pains to make her feel special. Donna went wherever we went and rode in a small burnt orange wheelchair.  It was given to her by the Shriner’s. I remember that chair fondly after thirty years. We went to church every Sunday and afterward we made our weekly pilgrimage to Burger King. Since we didn’t have a lot of money, my parents shared a drink, and Delores and I shared a drink. Donna had milk from home. (All she would drink was milk or orange juice).  Those memories are very wonderful for me.

Weekdays, Mom cooked and before I was old enough, she, Dad, or Delores would feed Donna. Donna had a love of food that could be amusing. If she liked a food, such as pizza or spaghetti, she would tremble. It would take maybe an hour for her to eat. She savored each bite. When she did not like a food she would let it roll out of her mouth the way a toddler does. She also knew the difference between Krispy Kreme doughnuts and the generic ones you can pick up at the grocery store. She’d eat a whole dozen Krispy Kreme’s if you let her! Luckily that was really the only sweet she ate.

Mom also held Donna every day for about an hour until Donna was around twelve and she got too heavy. I can remember Mom holding her across her lap. I was a bit mischievous but was never jealous of Donna. I think I was just always proud to have her for my sister. We were all proud to have her in our lives; we can thank our parents for that. We just followed how they behaved toward Donna.

School Incident

I have a degree in Early Childhood Education and am in NO way putting down all teachers. I know how hard it is to be an educator. However, sometimes parents need to use their voice. They need to be heard and they need to know exactly what is going on in a typical school day. When Donna was about ten, she attended the elementary school I would later attend. She was in the special education class and rode the bus every day. She absolutely loved riding the bus.

One morning Mom got a phone call from her teacher. “Ms. Hutchins, Donna is having a very bad day. Has she had her medicine?” Mom told the teacher yes and suggested that they turn on some music for her. She loved country music. A little while later the teacher called back. “She’s not doing well. She’s screaming, and we just don’t know what to do.” Mom said she’d come over. The teacher told her that she’d had a slight accident and they dropped her getting her out of her wheelchair early that morning. Mom went to the school to check on her, and she seemed alright. She told the teacher to call her back if she got worse.

That afternoon the bus dropped Donna off and right away Mom knew something was terribly wrong. She and my sister Delores got into the car and took Donna to the hospital. I remember being five years old and in dance class and Delores telling me I had to leave. We rushed to the hospital; I was incredibly embarrassed going in a pink tutu.Mom told the doctor that she had been very agitated at school and when the bus brought her home she immediately brought her there because she was shaking, and her lips were gray. While they doctor was talking, Mom took Donna’s socks and shoes off. Her leg had terrible bruises. They did an x-ray and the doctor told Mom that Donna’s leg was broken. Mom was so upset. She was mad at the school for not being completely honest. She was mad at herself for not taking her to a doctor that morning. She was mad because Donna was jostled on a school bus all afternoon instead of receiving medical attention. The doctor informed Mom that had she not been on her medications she could have gone into shock.

My parents talked about what happened to Donna. They realized they could sue if they wanted. I also remember the school sending flowers a few times and thinking that must be the nicest school. My parents are very dedicated Christians and decided it was against the teaching of the Bible to sue the City of Kingsport. Mom did go to the school shortly after and ask the teacher what happened. She said “I know you or someone fell on her while you were getting her out of her chair. Tell me the truth.” The teacher admitted it. Why that teacher couldn’t have told Mom that morning?

 I admire my parents so much for their integrity! Nowadays it would be on the news if word got out that a child, with Cerebral Palsy in the special education class, was dropped and rode the bus home with a broken leg.

Weeks later the incident died down and my parents forgave the school. Donna went back to school, but to the middle school. I went to that very elementary school the next year. I was never questioned about it in school or known as the kid whose sister was hurt. None of it was ever brought up and Donna happily rode the bus to school until age twenty-one.

                                                              Donna’s Surgery

I feel I must include Donna’s surgery back around 1989 when she was eleven. I was only about seven at the time, so I didn’t know a whole lot going on then. Mom and Dad had taken Donna to a doctor who suggested a surgery that could straighten her legs and possibly allow her to walk. I was happy at the prospect of seeing my sister use a walker or another assistive device to walk. Mom, Dad, and Delores were all excited! It seemed like it could work. The surgeon would make an incision on the back of her leg and cut a tendon or ligament that would lessen the stiffness in her legs. The cerebral palsy made her legs very thin with no muscle tone and they would not straighten. I remember Mom and Dad having long talks about it.

Today I am the mother of a three year old. If he had the problems Donna had I would probably consider surgery if I thought, he might walk someday. I cannot imagine having to make that decision. We as parents, grandparents, aunts, uncles, and any other type of caregiver must sometimes make these difficult decisions. We all want the best for our children. We want them to grow up happy and healthy. We all love to see a child take their first steps.

Mom and Dad decided to do the surgery. Not only did the surgery not work, the surgeon cut the wrong area. Now we had this poor pitiful child with both legs in casts to protect them. She cried like she was four again. She was in such pain she did not even want to eat. Donna loved eating as much as she loved going to school or riding the bus; to see her like this was unbearable for my mother. Mom again, blamed herself. My dad blamed the hospital. Mom tried every way in the world to get Donna to eat. She tried giving her doughnuts, milkshakes, sandwiches, but nothing worked. One day she bought a case of Ensure and that helped save Donna’s life. Vanilla Ensure was what she lived on for six weeks. Thank God for Ensure! When she started eating solid foods again, we finally knew she would get well.

It took her months to recuperate, but she did. Her legs were still scrawny and crooked as before. Mom talked for years about putting her into that torture, but we will do anything at the hope of having our loved one walk or achieve any goal. It makes me think of Christopher Reeve when he had his horrific riding accident. He and his family would have done anything to have him walk again.

 Looking back, there’s really no time or reason to blame anyone. We must just realize we made a mistake and move forward and pray. We can always blame doctors, but doctors are men. Doctors are not God. I do believe God sends us good doctors to help us when we are sick, but sometimes things do not go as planned. When this happens, our faith is truly tested. There was a reason Donna never walked. We do not know the reason, but God does. She was in a wheelchair, but she never really had problems like most of us have. She didn’t have the mental capacity to worry. She didn’t have to worry about a job, her health, finances, or any of those things. That itself was a blessing.

                                                             The Shriners

While Donna convalesced from her surgery I remember going to the hospital with her. I cannot forget the Shriners. The Shriners are a group of wonderful people who help children with disabilities or children who have been injured. The Shriners help parents and families in so many ways. They do not ask for payment no matter the situation. They will provide lodging for families to be close to their child. The Shriners also help get equipment for children who need assistive devices. My sister was helped by this amazing organization many times. She went to the Shriners Hospital in Greeneville, SC. The Shriners picked my parents up, took Donna to the hospital, and even paid for my parent’s food and lodging if they had to stay overnight. My mom once went on a trip to South Carolina with Donna and before the Shriner’s bus got out of our area, Donna vomited all over my mom. They had to ride over two hours covered in vomit.

My mom has told me many times how the Shriner’s paid for Donna’s first wheelchair. It was a small bright orange wheelchair. I also remember it being very narrow. Mom said that she and Dad went to the Shriners hospital about six times in all. They did a lot of research and said that they were very sorry, but her condition was very bad and there was no further treatment they could do that would benefit her.

When I see a Shriner on the street collecting money I always explain to them how my family was helped by their organization. I also tell them even if they get discouraged to keep doing what they are doing. They really help and change children’s lives. My gratitude towards the Shriners will always run deep.

Little House and Andy

The only times I was ever mad at Donna were when she bit me or pulled my waist length hair. It really hurt! One time in particular always comes to mind. I always got off the school bus around four o’ clock. “Little House on the Little Prairie” re-runs came on about the time I got home. Because I had read the books, I had really fallen in love with the show. Meanwhile, Donna always had to watch Country Music Television (CMT,) which were twenty-four hours of country music videos that played in a loop. I came in one afternoon desperate to find out what happened on the two- part episode of “Little House” from the previous afternoon. Donna had a fit when I turned on my show. She screamed and yelled for her CMT to be turned on. Mom turned the station and she suddenly quieted down. I had always heard music soothes the savage beast, and I know now that it’s true. I was so mad! I went to the laundry room to watch “Little House” on my dad’s “postage stamp” TV. He always called it that as he said it was the size of a postage stamp. Every time I watch an old re-run of “Little House” I think of how mad I was at Donna that day. Mom loves to tell that story of how mad I was but tends to embellish. She says that I cried and ran around the living room yelling “my Little House! Donna takes over the T.V.! This was a two-part episode, Mom!” Not only did I have a hard time getting to watch “Little House,” my parents would turn on “The Andy Griffith Show” and as soon as Donna heard that familiar whistle, she’d cry. She was spoiled on quite a few things. Once she bit my mother on the foot as Mom watched “Andy.”  This television feud went on for years. Sometimes Donna would cry through your whole program and when it was over, she’d stop crying! The whole family would get aggravated. It’s amazing how someone who could not even talk could take over the T.V. She also liked “Hee-Haw,” but they eventually took that off the air. I kinda liked “Hee-Haw.”

The Van

I remember so much CMT would play that Mom or I would be walking around the house and say, “didn’t this video come on just a little while ago?” I could leave the house, come back and maybe see the same video playing as when I left. If the station was left on for six hours, the same video may come on three times. The funny thing is we may be just walking through the house or in another room and still hear it. Still, if it made her happy we had to let her have her videos. All she really had was her music, riding the bus, and school. When she was little she didn’t weigh that much, so Mom could take her more places. But by the time she was twelve she was getting too heavy to take places. Fortunately, when Donna was about age ten to twelve, she went to Hope Bible Camp. It was a wonderful day camp in the summer for children with disabilities. A van picked her up in the morning or early afternoon and brought her home in the evenings. When she was around twelve she won “Favorite Girl Camper.” They put make-up on her and a dress and curled her hair and all the families got to see the awards. I was very young but can still remember her winning. I was very proud of her. She giggled and giggled. Donna always loved a fuss being made over her, much like a toddler does. The trophy she won for “Favorite Girl Camper” is still in her old bedroom today. The year she won was her last time she got to go to Hope Bible Camp. I think maybe she was considered “too old” past a certain age.

When Donna got to be around twelve or thirteen, it started getting harder and harder to take her places. Mom tried very hard, but Donna started getting bigger from the waist up. Taking her somewhere meant getting her out of her wheelchair, putting her in the front seat, and putting the chair in the back with the trunk open. (Very Beverly Hillbillies). Her doctor was mindful of this and would check her in the parking lot! Dr. Jerry McMahon was one of the nicest, kindest pediatricians a parent could ask for. I still remember him listening to her heart and lungs while she was in the car. My aunt saw the predicament my parents were in and wanted to help. She bought them a brand new mini-van. The car dealer told my parents that even football players with injuries can get in those vans easily. That was a lie! We tried to get her wheelchair in by lifting it up and getting it into the van. When we tried this her head would hit the roof. We tried about ten different ways. My aunt had such wonderful intentions, but the only way Donna could ride in it was to take out the middle seat, put her in the front and put the wheelchair where the middle seat went. We couldn’t take her very often in the van because it was just too hard.

I don’t like to admit this, but I used to be a jealous of people who had wheelchair lifts on their vans. I used to ask Mom why we couldn’t get one. She’d tell me that she didn’t think there was a way to put a lift in a mini-van and they would never be able to afford it. Then anytime I saw someone with one I’d be so mad! Why do you get a wheelchair lift when my sister needs to get out of the house, too? That is a terrible thing to think. I should never have thought like that, I just wanted Donna to get to go places in the summer. I wanted her to be able to go out a couple times a week. I am glad I got over being jealous of vans with wheelchair lifts, because everyone has a right to go out. Everyone has a right to safely go from their home to the store or a restaurant. It was a terrible burden for me to be jealous of wheel chair lifts.

My oldest sister moved to Georgia in 1998. It was as sad time for me. I really missed my sister, Delores. My mom and I took Donna to her house only once. We couldn’t go through the front door because there were about six concrete steps leading to the door. The back door was too small for her wheelchair to fit through. Her wheelchair was bulky, and we ended up carrying her through the door. It was extremely hard. We took Donna on a few trips to Knoxville every year for about three years in a row to visit with Delores and her two daughters. We started meeting in Knoxville every summer and just have girl time. Each time we took her the drive didn’t go very well, to say the least. Either Mom or I (I had just gotten my license) would drive. Donna would suddenly get in one of her moods and have a spell. “A spell” was where she would suddenly burst out crying and screaming and try to pull her hair out or bite her hands. During these spells she would try and pull on the steering wheel! Imagine going 70 mph and suddenly someone bites your arm or pinches you, then grabs the steering wheel! We literally were taking our life and putting in in Donna’s hands. I would end up trying to find an exit ramp or veer off to the side of the road. Donna had no sense of danger. She had the mental capacity of about a fifteen- month old. When you tried scolding her, she would only laugh or keep screaming. I remember she grabbed my arm and with her mighty left-handed grip, squeezed my arm with her fingernails. I was driving on the interstate! I suddenly just pulled over before she grabbed the wheel. I admit things like that would make me mad. But you just had to remember that she didn’t know what she was doing.

That is probably the main reason the van didn’t work. Nobody likes to be pinched while driving. Mom had some feelings for the van that I had never known until recently. “Angela, I have hated that van since the day I got it. I know that’s a terrible thing to say, though. I should have been so thankful to get it, but I secretly wanted it to get stolen. I used to leave the keys in the ignition, so somebody would drive off with it.” When I heard Mom’s confession, I was astonished. I knew she wasn’t really enthralled with the van, but I didn’t know she wanted it stolen! She had wanted a Volkswagen Beetle convertible for a long time. My dad thought she was crazy because they were teenager cars. I was around eleven when she got the van and I didn’t think it was so terrible. It was a very dark maroon, almost like the color of cranberry juice. The interior was also maroon. It was your typical Plymouth Voyager. I actually learned to drive in that van. The inside was never too attractive because Mom and Dad took the middle seats out to make room for Donna’s wheelchair (although she seldom rode in it). Mom never kept in too clean either.

Eventually she got a 2004 Chrysler Sebring convertible. It was a silver car with heated seats and everything. Donna did ride in it once or twice. We thought she would love it. Who would not love riding with the wind blowing your hair? Donna, that’s who! As it turned out, it made her nervous and agitated. We had to drop her off back home right away.

Mom was so happy with her new car that when she bought it in February of 2007, she rode home with the top down. And for the first few years she rode with the top down if it was sixty degrees or warmer. It was good to see her have this happiness.

                       The Christmas Tree, the Bible, The Coffee Table, and T.V.

Christmas has always been special for my family. We put up the same artificial tree every year. The funny thing about the tree was that someone returned it to Sears sometime in the 1980’s. A customer complained about a branch being crooked. Dad saw it and bought the tree for one dollar. Why one dollar? He had to pay the dollar because when Sears would throw something out, they always made the employee pay for it. With his associate discount it cost ninety-seven cents. We often got things from Sears for a great discount because Dad worked there.

Donna really loved Christmas trees. The ornaments and lights were too much for her. One evening we heard a thud. We saw Donna lying in the floor beside the tree, which she’d turned over. She also had a strand of lights in her mouth! You walk away one minute, and she created chaos! My dad hollered and got really upset while my Mom and Delores and I laughed. Dad always got mad if he thought we were hurt or something. She also liked dangly ornaments. When she was more mobile, we had to be very careful where we put the ornaments. We also had to be careful and not use hooks. Donna stuck anything in her mouth.

Another funny thing she did, my mom still laughs about today. My Papaw (Grandpa) had a certain Bible he liked and always used. One evening while we were at Mamaw (my Grandma) and Papaw’s (Grandpa) house Mom went to the bathroom for a minute. Papaw came out screaming to my mom. “Carol! Carol! Get in here! The little turd’s tore my Bible! My favorite book! Psalms! Do something with this baby!” Well, the “baby” was about twelve and I still don’t know how she got his Bible off the coffee table. It may sound bad calling your grandchild with special needs a turd, but Mom’s side of the family were wild and had a very eccentric vocabulary.

One thing Donna did almost defy the laws of science. Once she pulled a heavy VCR off the T.V. and it landed beside her head. Another time she pulled the cord of a Tiffany lamp and it also landed beside her. There was glass in her hair, but she didn’t have a scratch on her. The thing I could never get over was the time she pulled the glass out of the coffee table. Many people love coffee tables, but I will still never own one. Donna was lying in the floor stretching out. All the sudden I hear Mom yelling “help!” I cannot remember who helped, but Donna had pushed the glass out of the glass coffee table while she was under it. She pushed it just the right way and ended up with a sheet of glass covering her whole body! Mom and Papaw carefully pulled the glass off her. She had not once scratch on her body! And she was laughing.

Although Donna could not sit up alone or walk, she could almost crawl and had broad shoulders. Anytime she saw an opportunity to be destructive, she took it. She even tore up the volume control on the T.V. Mom had a cabinet model in the early 90’s.  Mom was making her bed and suddenly heard the T.V.  playing very loudly. The T.V. was at the other end of the house, so she thought someone else must be in the house. She went into the living room and Donna was lying by the T.V. She thought for a minute, could she have done this? She pretended not to watch, and Donna slyly pulled herself up with her arms and turned the volume up. She really enjoyed this new toy and would turn the volume up anytime she could. Eventually the knob fell off and we had to use our thumb and pointer finger in a pinching grasp to get the volume up. Somehow Donna caught on to this also. Finally, though, the volume completely messed up on that RCA cabinet model T.V.

                                                              The Mattress

Around the year 1997 my cousin who had Spina Bifida passed away. She reminded me very much of Donna. She had close to the same hair color and everything. Her mother gave Donna her old mattress because Donna’s was wearing out.

It is important to remember that when you have someone who is not able to walk around, or not very mobile that they need a different type of mattress. They need a thicker foamy type or even one that pumps air in it so that they don’t develop bedsores. Donna used to use a deep egg crate mattress, but as she got older and was bigger she needed more support.

Donna got my cousin’s mattress and it was almost new. She used it for about six years. The foam was getting worn down as Donna would wet it even though we used every precaution. Eventually the mattress wore out and Mom asked the doctor to write a prescription for a new mattress. This was not our beloved Dr. McMahon. This was another doctor who did not understand that patients with disabilities are not the typical patient. He refused to write the prescription! I was boiling mad. Mom asked again. He turned her down again! The nerve! I was all of eighteen and I drove to the doctor’s office with the old mattress! I remember the crazy looks I got coming into that waiting room. I asked to see the doctor. When they told me he was out I said “yeah right, playing golf?” I told them my sister needed a new mattress because this one is clearly worn out! It could cause bedsores and my sister never had a bedsore, ever! They told me he was out of town. “Yeah, vacationing!” “No, his mother died,” the receptionist said. I did not believe her. “You people will say anything to cover that doctor!” (Actually, I said worse, but I will leave that out).

I came home, and Mom was on the phone with the doctor’s office. They said his mother had passed away and a girl came in with a mattress demanding to see him. Woops. “His mother was really dead?” “Yes,” Mom said. Even though she wasn’t mad at me, she told me not to go back to that doctor’s office again.

Several weeks later Mom told a nurse at our church that Donna needed a new mattress. He wrote the prescription out the day he talked to her. I guess it’s all in who you know.

One of the main reasons I did not like this doctor is the fact that he made Mom work so hard when she took Donna to the office. Instead of checking her out while sitting in her wheelchair, he made her place Donna on the patient bed. I thought this was ridiculous. Donna could not even sit up alone! This meant to got to the doctor Mom and Dad would have to roll her up the ramp, take her out of her chair, then put her in the van and then unload her, then put her onto the patient bed while holding her up because she couldn’t sit up alone. Then they would have to put her back in the van, unload her again then roll her back down the ramp. This was insane!

Even though I didn’t like that doctor very much he did get better with her over time and was her doctor for many years.

                                                The Lady with a Clipboard

I started sitting home with Donna when I was about ten or eleven. Mom never stayed gone more than thirty minutes when I was that young, but always told me what to do. She always said that the house ever caught fire to roll Donna out and leave the rest. She also said not to let anyone in. Leave it to me to let her down. I was watching Donna when I heard a knock at the front door. I peeped out the front window and saw a lady standing on the porch with a clipboard. She looked very businesslike. I suddenly remembered she had came by the house several weeks ago. I thought she wasn’t a stranger exactly, so I let her in.

“Hi, is your mom here?” “No, she’ll be back in a few minutes”. She asked how old I was, which I didn’t think anything about. I thought it was because I was eleven and looked about eight. I was super proud of being Donna’s babysitter, so I didn’t mind her asking my age. She did do some writing on that clipboard after that.

A day or so later I got the shock of my life when I found out it was a social worker and she was there to see about getting a nurse to help bathe Donna and do other little things for her. She told my mother that in the state of Tennessee a person had to be twelve to sit with another person or be left alone. I was both humiliated and angry! I was humiliated that I put my parents through that and so angry at that woman! I was small for my age, but I knew what to do. I knew Donna was my number one priority when I was left alone with her. I also saw it as an insult to my intelligence. I knew not to play with matches, catch the cat’s tail on fire, or whatever idiotic kids do! I was so sorry for Mom and Dad. I felt like if someone were to take Donna away it was my fault! Mom and Dad were both so understanding to me. I thought Dad would be mad, but he wasn’t. I told them I had saw the woman before and now I felt tricked. Finally, Mom got so upset yelled on the phone, “If you don’t think we’re doing a good job with Donna Jean, just take her from us!” When she said that, it all died down. I asked my Mom why. She said, “Angela they don’t really want Donna Jean. If they did take her she’d be put in a home. The state would have to keep her up. They won’t take her.” I still remember that after almost twenty-five years. I feel like I have the strongest mother in the world and that I was blessed to be in the best family in the world.

                                                         Beauty Lady

When I was around twelve I would sit with Donna more, mostly on Sunday afternoons. While Mom and Dad were gone I would wash her hair. I really thought I was something. I rigged up an easy way to do it. I placed the draining board from the dish drainer behind her head and rolled her as close to the sink as possible. We used to have a special tray to wash her hair, but she leaned her head back so hard it broke! Those things really can’t take much pressure. Donna usually enjoyed it and I would pretend she was at the beauty salon. I would use a French accent and call myself the ‘beauty lady.’ For around twenty years I washed her hair that way. I would sometimes have to be bossy and say, “lean back like I taught you!” and she would. If Mom tried to wash her hair she’d cry. Mom was like putty in Donna’ hands.

I would also trim her nails and paint them. She was like my muse. I have put makeup on her, using blush, eyeshadow, and lipstick. I could curl her hair and pretend she was like Cinderella going to the ball. It made me feel very useful and good that I was helping. That was really the ONLY way I could ever pretend to be a beautician. I cannot do hair and do’t pretend I can. I can comb it and do a ponytail. But boy did I feel like a beautician making appointments and working on high end clients. In truth I don’t think I could cut a dog’s hair very good.

One thing I always enjoyed would be getting Donna’s portrait made. We’d take Donna every three or four years. We went to Sears, JC Penney’s, or Belk to get them done. It wasn’t easy to get a good picture of her because she may be having a bad day and scream the entire time. When this happened we usually had to sing Johnny Paycheck’s “Take This Job and Shove it,” a selection by Loretta Lynn, or a gospel song. Singing in a portrait studio is a bit embarrassing but I have done it. The result is a giggling girl which made a beautiful portrait. My two favorite portraits of her are one in a pale yellow turtleneck with a little bow in her hair. The other is a portrait of her in a baby blue turtleneck with a blue ribbon in her hair. My mother usually put her in a turtleneck for pictures because Donna would pull her shirt collar down and chew on it. That’s not a good look for a portrait! I’ll never forget the time we took my little cousin with us and she could not believe how we had to sing in the Sears Portrait Studio. “Ang, it took two hours to get those pictures made! And you really had to sing to make her smile!” She got such a kick out of that. I look back at those memories and would not trade them for the world.

                                                               The Bus

The school bus has caused more panic and chaos in my family than the burning of Atlanta. In the morning, the bus came to pick Donna up promptly at 7:45. In the afternoon it came at 2:30. Because I love my mother I can say honestly, I have never seen anyone so late for everything be on time for this one thing.

 It was detrimental to be late for the bus. If you were not outside at 2:30 the bus went back to school. Then the school would call the house and ask what happened. You then had to pick her up from school, which was a lot of loading and unloading. My mother was late for everything. She was late for church, Bible school, lunches, weddings, funerals, bridal showers, baby showers, doctor’s appointments, Thanksgiving dinner, Fourth of July cook outs, fireworks- you name it.

The only time that my mother walked fast was around two o ‘clock. She would get a wild look in her eyes, give the car gas and take off. On more than one occasion I have been left at Winn-Dixie. We were grocery shopping (I don’t know why I wasn’t in school) and it was two-fifteen. “Oh Lord! The bus! Angela here’s my money. Pay for the groceries and I’ll get a neighbor to sit with Donna Jean and come get you!” Then she was gone. It didn’t bother me. This was because live in a rural town in East Tennessee. A girl of eleven or twelve could wait for someone with a buggy full of groceries. I just paid for the groceries and waited until she came. There was a time she left me at Wal-Mart and they had a pay phone, so I could call when I was done shopping and she’d find someone to stay with Donna while I waited. Wal-Mart had a good magazine section, so I didn’t care. I could read the National Enquirer in peace. I think I was so surprised to see Mom move that fast I couldn’t be mad.

My grandmother would get mad! She got left at Wal-Mart and Mom was almost in tears by the time she picked her up. She would say “How could you treat me so badly?” things like that. My uncle got left at Lowe’s. He was a contractor building a house and she left him right there in the lumber yard. She left him at a tile and granite place once also. He was a little mad, but he knew why she had to leave.

I remember two times in probably fourteen years of Donna riding the bus that we missed it. Once Mom was late. I don’t know the reason why. The second time we were painting the living room and we did not hear the bus. We waited around, and after 2:45 we called the school. She had been taken back to school! We had been so into painting we missed the bus! Mom ran to the garage and we went to the school with our paint clothes on.

Mom never gets mad. I do all the time, but she doesn’t. She has patience and can only see the good in people. That day when they accused her of missing the bus on purpose, she was not patient! She didn’t see kindness in the principal either. She was wearing Dad’s old shirt covered in paint. “Do you think I wanted to come here like this? Are you crazy?” I remember her yelling. I was really surprised at the outburst coming from my mother. The only time she was mad was if it was over us girls.

That was not the first time one of my parents got upset over the bus. Another time while Donna was at the high school, the bus route was going to change. Donna Hutchins would be the FIRST student picked up and the last to go home. Donna would have absolutely loved it. The problem was that my parents would have to get up at 6:15 instead of 7:15. Dad also worried that she could catch cold during the winter months. Both my parents were not looking forward to getting up an hour earlier to get Donna ready for school. My dad called the Superintendent of schools and told them his daughter “had an adversity and her mother and I cannot run her to the bus stop on cold winter mornings before 7:00! You are going to have to talk to whomever is over the buses and fix this!” The next day her bus schedule went back to what it had always been.

                                          The Teacher and the Two-Way Journal

One of the ways teachers communicate with parents is in a notebook called a two-way journal. My family always called it “the notebook”. I did not know the notebook had this specific name until I was in college for Early Childhood Education. The two -way journal is merely a tool to write how the child is progressing or what the child has been doing and the parents can write back with any concerns they may have. Donna’s teacher from age fourteen until twenty-one was ALWAYS writing things in her two-way journal. I’ll call her Miss Smith.

Miss Smith had her hands full and probably needed to retire by the time Donna was in her class. I cannot recall how many assistants she had. Perhaps she needed more assistants, or maybe she did not like her job particularly well. It is well known that being a special education teacher has a very high turnover rate. The job is physically demanding. You may get slapped, pinched, or kicked. The children in your care may need assistance with using the restroom or may be completely incontinent. Donna was incontinent, and she would pull her left hand back, which would smack you in the face.

One day Mom opened Donna’s notebook and was laughing hysterically. “Look what the teacher wrote!” I read the entry

“Mrs. Hutchins,

You are going to have to put a bra on Donna. She has been pulling her shirt up and chewing on it, which exposes her bosoms! I cannot walk down the hall holding a student’s hand, pushing Donna’s wheelchair and try keeping her shirt down. Please buy some sports bras for her and pack extra in her backpack and hopefully it will resolve the problem.

S.”

This did not irritate Mom, she thought it was about the funniest thing Mrs. Smith could write. “Donna Jean Hutchins, are you going around that school exposing your bosoms! You can’t do that! Do you want to be expelled?”

The next day Mom and I went to Sears and purchased several sports bras. Mom said she never thought she’d have to buy Donna bras, since she just sits in her chair. But for the remainder of her high school career, she wore a bra everyday.

Mrs. Smith always signed her name “S.” Mom and I thought it was because she was usually mad or perhaps she wanted to appear so busy she couldn’t finish the last four letters of her name. Once or twice Mom signed her name “C” instead of Carol if she was irritated at Mrs. Smith. Mrs. Smith also never seemed to have anything positive to say. That was always disheartening to me. Mom didn’t seem to mind, but I did. She could have written “Had a good day today. Can you send some baby wipes? We are almost out.” Instead she always wrote things like “Need wipes, S.” Sometimes she would write “Send Donna more pants and shirts, S.” “Donna had a BM send more diapers, S.” I have never thought about it, but maybe Mrs. Smith was unhappy at home or work. Perhaps she thought she had a thankless job and we did not appreciate her. I think if she could have been just a little bit encouraging or had the slightest bit of positivity in her notes, she would have been much more liked and appreciated by my family.

My mother never had any real confrontations with Mrs. Smith, but had she been a little kinder Mom would have been much more empathetic of her. I just think if she had a small bit of empathy in her heart, she would have been a better teacher and much happier. Having a caring heart is probably the most important thing a teacher can have. I think you can either be a teacher or an instructor. To me a teacher is caring and has a warm quality that radiates through a classroom. An instructor is someone who teaches children but has no empathy and their classroom is a lonely one.

I think maybe if they’d had more activities for both to look forward to, like Halloween parties, Christmas parties, St. Patrick’s Day parties, and invited the parents to these gatherings it would have been fun for everyone involved. The only thing the class ever did was send out Valentine’s. I know because I usually wrote Donna’s.

I wonder if Mom had asked Mr. Smith if she was happy in her job what she would say. My mom never asked much of Mrs. Smith, yet she was never warm or kind. My sister was in her class for seven years and she never really wanted to speak with my parents. I am sure my parents would have talked to her about anything she needed or wanted in terms of her class. Perhaps we could have reached out too Mrs. Smith more. She may have gotten aggravated, but I cannot help it- her notes were funny to us all!

                                                          The New Chair

Each wheelchair Donna had was something special to her. The medical equipment company usually sent someone to measure her so that it would be fitted to best suit her specific needs. Because she couldn’t it up alone, she needed something that would be stable and useful. I mentioned earlier Donna got her first wheelchair from the Shriners. She used it for a few years and eventually got too big for it. Her second wheelchair was gray. It had larger wheels in front and a round white spacer that went between her legs. The spacer was kind of like something used on a high chair. She had this chair for five or six years.

Donna’s teachers told us that she preferred purple blocks to other colors. When Mom found this out, she decided her next wheelchair would be purple. It was a plum color with very large front wheels. This was the chair she seemed to prefer. She had it for probably ten years. By the time we needed to get a new wheelchair for her, the headrest was broken, the footrest was broken, and it looked like something from the Great Depression.When I say Great Depression, I don’t mean Mr. Potter’s wheelchair in the beginning of It’s a Wonderful Life. It was more like The Beverly Hillbillies! My dad had a board fastened to the back of the headrest and used various boards and strings for a couple of months. I was so embarrassed! I didn’t like taking Donna out with her chair looking so shabby. People are very quick to judge. “That poor kid, why don’t they take care of that?” I could hear people say. We knew it looked terrible. Mom was embarrassed by it also. The reason we had to use it for so long was because the doctor had to write the prescription and it had to be approved by her insurance. Thankfully, we got everything in order and the medical equipment company was ready to send someone over to measure her for a new chair.

Mom decided on one with a pretty pink seat and headrest this time and with purple on the bottom. The wheels were much smaller. The old one had large bicycle wheels, but these would be less bulky and much more attractive, and we were convinced she would be so happy. She wasn’t.

When the medical equipment man came by with the pink shiny new chair, Donna had a fit! She screamed and cried and bit her hands. She did this when she was very irate. We did not know what to think. We had never encountered a problem like this before. Each day when we were getting her out of bed she screamed. The screaming spells lasted all day. When we put her in bed at night, she seemed very sad. It hard on the whole family.

Mom said we’d just have to get her old wheelchair out of the garage and let her use it. “She needs to be happy while we have her. She’s so upset, she may not live long.” I told Mom that the mean ones live a very long time and that she was scamming us. My dad and I were bound to see this through. “Carol, let’s give it two weeks. And if she still doesn’t like it you can get the old one.”
I knew it would work. By the end of the first week she was getting better and better. When Mom talked to the medical equipment company they assured her that this was a normal way to behave. She had her old one a very long time and this change was very hard, but she would soon get used to the new chair. By the end of the second week, she really liked her new chair. I feel now that it was very much like taking a baby’s bottle away, or taking away a special toy a child loves. We were taking away her security. Luckily we got to get rid of the old chair. I don’t know what my parents did with it. The Salvation Army would never have accepted it, as it was too shabby looking! It would’ve also been a Goodwill reject. But to Donna it was beautiful.

               Graduation

Donna went to the only high school in the city, Dobyns-Bennett. DB (as we call it) is known around East Tennessee for being a school with high academic expectations, an exceptional football team, and great high school marching band. Donna had been attending for about seven years when she had a gradation. It was a special graduation because she was the only one in her special education class graduating that year. I got out of school to attend Donna’s graduation. The principal and vice principal were there. Mom wanted to buy Donna a dress for the occasion, but we were afraid she would try and pull the dress up and chew on it. Mom got her a really pretty blue shirt and white pants. When we got to her classroom where the graduation was being held, we were surprised. The teacher had braided Donna’s hair and she had a whole sheet cake with a light purple border and purple flowers that said “Congratulations Donna” on it. While they were giving her diploma, the graduation music you walk out to was playing! It was a sweet ending to her school days.

I’ll never forget Mom saying all three of her daughters would be graduating high school. It sounded so sweet. We were all proud and happy that day. Donna was in a good mood, thank goodness! She was happy because all eyes were on her. She adored being the center of attention the way a toddler does.

 Because of her disability, Donna’s IEP (Individualized Education Plan) allowed her to stay in school until age 21. This really helped her. Although she couldn’t speak, read, or write, school was good for her. She got to ride the bus and see other kids. She got to go on field trips. She bowled in the Special Olympics a few times. I have wondered how on Earth they managed that! But it helps the parents and children of such disabilities to have school to go to. It helped Mom because while Donna was in school, she could get errands done. Now with school behind her, Mom really started to worry. She didn’t want Donna to have to stay home all the time and be housebound. It was just so hard to get her in and out of the van we could barely take her anywhere. We live in a rural area in Tennessee where people do not use taxi’s, buses, or public transportation to get from place to place. You pretty much need a car around here to get many places. We are in the Tennessee hills so you literally do walk uphill both ways!

Donna had been out of school for several weeks and Mom heard of the transit service equipped with a wheelchair lift. This was it! We could take her out using the city’s new transit service. The transit service actually started in 1995, but I do not recall seeing it. Perhaps I just never noticed.

             The Mall

Mom decided we could Donna to the mall a couple times a week and use the transit service. We called them and they would come to your home and pick you up. They would also take you home as long as you called thirty minutes in advance. The transit would also take you places only within the city limits. The downside to this was that Donna’s doctor’s office was about one mile out of city limits and they still wouldn’t pick her up. That part really aggravated me.

We started taking Donna to the mall because you had places to look in, a few restaurants, and everything was right there. Donna really enjoyed these mall trips. We took her to Piccadilly restaurant to eat every time.If you aren’t familiar with it, Piccadilly is a cafeteria style restaurant along the southeastern United States. (I recommend the salmon patty, fried okra, and macaroni and cheese.) I have to take a moment of appreciation for the way Piccadilly treated us. We always sat in the back because Donna’s chair was so big and she could get loud, but every employee treated us like family. They gave my sister an adult sized portion of food and always rang it up as a child’s plate. I cannot forget kindness like that. They would also sometimes bring her a balloon. We started taking Donna to the mall around 2001. We finally just decided that Fridays were best, so each Friday Mom took Donna to the mall all day. My dad was still working at this time and not a lot of people had cell phones, so if Mom forgot to call the transit for a ride she’d have to wait on my dad to get off work.

Mom is such a wonderful woman. No matter what, Donna got to go on her outings. Once we forgot it was Good Friday and the transit wasn’t running, Mom got my dad’s truck and took her out. She wanted Donna to have an outlet. She wanted her to be able to go somewhere. Mom worried that Donna would have to spend too much time in the house if she wasn’t able to take her out. Mom would stay five or six hours at our little mall so that Donna could get out and see people and be happy.

I am not going to lie, after years of going to our little mall every week and doing the same thing did get old. But it never got old to Donna. In the summer when we took her home it was around seven and still daylight. She would cry because she thought her mall trip wasn’t long enough. But in the winter when it got dark around six, she never cried. She thought she was supposed to go home when it was dark. She also knew the streets we’d turn down. Sometimes she would cry and it would sound so sad. This shows how little we know about what goes on in people’s minds that have disabilities. Donna knew when we were taking her to the mall where she was going. She knew the way home and if something messed up her routine we knew right away. What is trivial to us really means a lot to someone like Donna. Sometimes we have to think a little more like that person to understand them. We all get caught up in our lives and don’t think about the child who loves to draw the same picture of a balloon everyday, or the girl who thinks going to see her teacher is the highlight of her day, even though she may have the same routine.

Sometimes a routine is a great thing, but sometimes Donna got tired of the same old thing. She wanted a little change. If someone knew came to our house and she really liked them, that was her way of saying “this is such fun! I needed a change of pace!”

                                               Beginning to Change

Donna was out of school for about a year when she was getting restless. She didn’t want her routine anymore. Normally she got up in her chair, eat a little and we’d let her lay in the floor on two soft bedspreads and she would roll around. She would listen to her music and sometimes laugh. Her muscles were not in really bad shape at that time. She would lie there and Mom or me would get beside her and make her giggle.

Soon after school she changed. She was in really bad moods and would bite her hands from frustration or try to bite us. She would scream and act wild. She would take her teeth and bite the cuff of her shirt until she ripped it to the elbow! Some of her clothes made Depression-era clothes look like Armani. The collar of her shirt would have tiny bite holes in it. It looked like a mouse chewed on them. We obviously couldn’t take her anywhere like that! Mom would save a few shirts for going out and when Donna got home she’d put her old ones back on. One year she got fifteen sweatshirts for Christmas, They lasted about six weeks. I got so mad at her once. I hung my pants over a chair close to Donna and five minutes later the leg was slit almost all the way up. “My new pants I got for Christmas!” I yelled to my mom. But it was my own stupid fault for leaving them near her.

Mom took her to the doctor and he suggested a medicine that could help. She was already on two medicines since she was a child. Perhaps she had gotten so used to them she needed something else. We gave her the medicine and in two weeks she was like a zombie. It was like she could just stare. She didn’t have a hearty appetite and there was no laughter. The little twinkled was gone from her eyes. One day Mom tried to put her in the floor and she screamed. We finally figured out that it hurt her now to lie in the floor. My mom called the doctor and he suggested to take her off the medicine. Mom is a very wise person. She tapered the medicine off for several weeks. By one month she was off the medication, but was still not the same Donna. She never wanted to lie in the floor on the bed spreads and stretch out anymore. My mother always thought that medication had something to do with it.

Around the age of twenty two Donna’s legs started to get more stiff. Her body may have been only twenty two, but it was like that of a much older person. Her legs would not stretch out very far at all. She didn’t like to roll around on the floor, which really had us worried. Was she giving up because school had ended?

Donna always had to have a special mattress to keep from getting bedsores and pneumonia and she also had a hospital bed. The bed itself was older and very standard. It had a button that would make it go up and down. Whenever I had a friend over and they saw it, they always wanted to lie on the bed and go up and down. This was alright unless my dad saw. He would worry that it would tear up. I think it was around this time she got a mattress that blew air in and out continuously. This was wonderful for someone prone to pneumonia.

As a little more time went on, she would not let Mom turn her on her side at night. Mom stayed up late or woke up and did this religiously for years. I asked her when I was about ten why. “ She can get pneumonia very easily, and lying flat on your back without any exercise makes you very prone to it.” I thought she was just being stubborn and wanted to lie on her back, but Mom knew it hurt her now to lie on her side. I felt really bad about that. I felt sad that she couldn’t lie on her side without being in pain. Mom was right. Donna started getting pneumonia around 2003.

The Hospital

Donna got pneumonia when I was working as a shuttle driver for Sleep Inn. She coughed terribly and was very run down. Mom took her to the local hospital (the best one around) and they said give her Tylenol and she’d be fine. The next night she took her to another hospital (a smaller one) and they said she had a very bad case of pneumonia. It took about ten sticks to find a vein, but they got an IV started and then she pulled it out. After realizing she may be sick but she was still very feisty, they put the IV in her left hand so she couldn’t pull it out as easily.

The nurses didn’t know what to do with her at first. She was an adult patient, but clearly needed around the clock care. My mother explained to them that someone would be with her in the hospital most day and night. The wonderful nurses on the sixth floor of Indian Path gave us the most wonderful room. It was a room with two beds. It was very large and it meant so much to us!

When someone is in the hospital, they usually don’t get much sleep from the nurses and doctors coming in and out all night long. Donna and my family were no exception. But the embarrassing thing about that extra hospital bed was that I found it so comfortable! When I had to spend the night with Donna I knew I wouldn’t sleep, but I wouldn’t be in a cramped little chair. I would be in that wonderful twin hospital bed with that great mattress. Whenever I visited Donna in the daytime and I would stretch out on that bed beside hers. I would sleep for two or three hours. She would be sleeping too, because she was up all night.

That first hospital stay I got to know the nurses really well. They treated Donna like a little princess. They knew that she couldn’t speak, but loved being fussed over. They knew how treat her, both as a patient and as a person. She liked the louder nurses. The ones who talked loud and talked a lot to her. She enjoyed someone who was noisy and maybe a little irreverent. I got used to being at the hospital. I realized it gets tedious and boring and hard. My parents definitely spent more time than I did, but spending so much time at the hospital is taxing. I was getting my first real dose of it.

I awoke one morning to someone asking if Donna could have a bath. I was so sleepy my eyelids felt like they were superglued shut. I peeked over at a clock. It was six in the morning. I had just went to sleep an hour ago! They asked if my Mom was coming. I told them she’d be there but not early in the morning. Then they asked my age. “Twenty one.” “Oh we thought you were a little girl spending the night!” I was kind of irritated. I had helped take care of Donna what seemed like my whole life. I did not like someone questioning me about my sister. But when you are very short and wiry and have on Hello Kitty pajamas, you don’t look twenty one.

That was the first time I’d spent the night and it didn’t take long for me to figure out that you need to bring a good book, have a good show to watch, and not be embarrassed to go to the nourishment room. It was a wonderful little closet with Diet Coke and crackers, which meant you didn’t have to spend money on all that stuff? Did I mention I am very frugal?

Donna spent several days in the hospital and I was very glad when she was going home. I told Mom I was going to clean the house so she could return home ton a clean house.

When she got home I remember looking at Donna’s hair and thinking she looked so pitiful. The next day I washed it and conditioned it. I didn’t think I would ever get all the tangles out. When I was done she looked like herself again. We were so happy to have her home, and she seemed very happy to be home. Her first night home she giggled like a little baby when she went to her room. It wasn’t a hospital room. It was her own room where she had all her little stuffed animals and her radio. We turned the radio on very softly every night from the time she was a teenager. She preferred country music stations to any other. About four in the morning Mom would get out of bed, slip into Donna’s bedroom and check on her and turn off the radio. Mom did this every night that I can remember.

Unfortunately that was not the first time Donna would be getting pneumonia that year and definitely not the last. Once she returned home from her first adult hospitalization, it seemed to be something that kept coming back. We noticed in about two months that she had been very wheezy and very pale. Mom said she started gasping for breath so she called the ambulance. My dad did not like for Mom to call the ambulance.

“She doesn’t need the ambulance! We can take her ourselves!” My mom let him do this once and it was terrible. When you take someone who is an invalid to the hospital, first you load them into the car, then unload them. Then you wait an hour while they process your information and ask what your problems are. Then the ER nurses look for you a bed. There you wait until someone comes to check you out. Then the doctor will admit you, if you are very sick. When the doctor admits you it may take five or six hours or even longer to get into that room. Now if you call the ambulance, the paramedics check the patient’s vitals and put them on a gurney and head out the door. When the paramedics arrive at the hospital they unload the patient and they are then transported to a little room in the ER. Then the nurses and doctors check the patient out and decide if they should be admitted. This is so much easier! I have to agree with my mother wholeheartedly on this. My dad being the most ethical and trustworthy being on the planet did not want to bill the insurance for the ambulance ride. I am not a lazy person by any means, but if I can save a lot of time, lifting and make something a little easier, I will.

This time they admitted her she didn’t get her fancy room. It was a blow. She was still on the sixth floor, but we were very spoiled by that extra bed. The stay wasn’t as long, which was wonderful. The sixth floor nurses were happy to have her but also didn’t want her in the hospital. I genuinely liked most of those nurses. They worked hard and cared for my sister as if she were their sister. Once in a while she may have a man nurse. This was something that Mom was a little embarrassed about. I was also. Donna may have had a toddler’s mind, but she was developed like a young woman. It was awkward for us to have a male nurse dress her, so we requested a woman unless they were just giving her medication. They understood and were very kind to us. I did stay one night in that terrible chair. Mom and dad did on different nights. We tried to rotate nights on hospital stays. Mom always took the first night. Dad or me would do the second and so on. Mom always stayed more than Dad or me. Dad was wonderful about staying, too. But Mom would never miss more than one night of staying. She would feel guilty about leaving “Little Donna Jean”, as she called her. Mom would also sing to her so sweetly. She usually sang old hymns. Some of them most people probably wouldn’t know. She sang “I’ll Fly Away” “How Beautiful Heaven Must Be” and Donna ‘s favorite, “The Good Old Gospel Ship.” Mom accidentally found that one in an old hymnal. She started singing it and Donna laughed so hard she couldn’t catch her breath.

Donna came home again and soon things would return to normal but in Donna was getting pneumonia every other month. It was wearing on the whole family.

                                                         Would You Like Help?

The hospital was really getting us all down. Then one day at the hospital, a social worker approached my Mom. She began asking my Mom questions like how old Donna was and if she lived at home. “Of course she lives at home.” Mom didn’t like it when people asked if Donna lived at home. I didn’t either. I saw it as an insult. It never occurred to me that she would live anywhere else. The social worker was actually very kind and was surprised to know Donna was twenty six and lived at home and was taken care of by her family. She never got a bed sore until she went to the hospital. I was actually the one who found it. I took her sock off and looked at her heel and I saw a sore forming on her right heel. I yelled for a nurse. I was very mad. I was mad because she lived at home for over twenty years and got a sore in the hospital in just two days. That really speaks volumes about the kind of care she received from my Mom and Dad. Mom and Dad never had a break for twenty six years. That was about to change.

The social worker had her insurance approve CNA’s (certified nursing assistant) to come to the house three days per week for six hours a day. Mom was elated! “I cannot believe it. Larry and I can go out together! We can go to church together!” My parents only went to church together when I sat with Donna on Sunday morning. We sort of had a rotation schedule. There was a time they had went six months without going out to eat together. When I heard that I felt really selfish. I was probably a teenager at the time. They could have asked me to sit with Donna and I would have almost any time. I felt guilty about them not spending any alone time together as a husband and wife. I felt that if I’d paid more attention to that I could have let them go out and spend more time out together. I didn’t know for many years that having a child with special needs puts more strain on a marriage. I thought it made everyone closer. I was so unaware at the mental strain it can put on the parents. My parents rarely fought, and it was never over Donna’s care. I didn’t realize what a strong union my parents had until my late 20’s. They put God first in their marriage and let him guide them as they took care of us.

                      The Feeding Tube

Donna kept getting pneumonia every couple months during 2003 and 2004. We knew that if this kept on that she wouldn’t live another year. We were so upset and confused around this time. Eventually a doctor informed us that she would need a feeding tube to keep from getting pneumonia. He had told us that when she ate she wasn’t swallowing properly and food was getting into her lungs and giving her pneumonia. “She is aspirating,’ he said. Mom clutched her heart because she thought he meant ‘expiring.’ We were having this deep conversation and I was said, “No Mom, he said aspirating. Not expiring!” That still makes me laugh to this day. He then explained it again for Mom so she could fully understand what was going on. “A feeding tube is the only solution to the problem. If you put the tube in, she can eat with the tube and she will not aspirate on her foods. If you continue leaving things the way they are now, she will keep getting pneumonia and it will take her.”

We were all stunned. We talked about it for days. I was so upset by this. A feeding tube? It sounded so final. Mom felt the same way. She and Dad knew that Donna loved eating. It was her one pleasure and now it would be taken away. I think the three of us moped around for a few hours before calling our pastor. He told us to pray about it. He had been to the hospital so many times. A lot of our church family had been in and out also. Our friends and family were supportive for the most part. My sister, Delores tried calming us all down by telling us it was a feeding tube, not the end of the world. She was still living in Georgia so she had a fresh perspective on things. She could call us and discuss things without getting upset. It really helped me.

My parents decided to go ahead and put in the feeding tube. We were told what to expect and how to take care of it. The nurses were very kind and helped us understand what we were going to have to do now. It seemed so very difficult to all of us. Then after she went into surgery, my sister arrived from Georgia with her girls. It was the miracle we needed. We had something else to focus on and another perspective. Mom said she couldn’t have stood it if Delores hadn’t came down to distract her.

When someone gets a feeding tube inserted, their body rhythm gets thrown off. Donna, who had never had diarrhea in her life was suddenly having bouts of diarrhea that was quite overwhelming. She was still in the hospital at this time. I felt really sorry for anyone having to clean it up. I know we all did, but that’s just part of it. She was released in a few days with her instructions that may as well have been written in Greek, because we were so frazzled. Fortunately, Delores and Dad were keeping their wits about them and we started feeling less scared of the tube.

I was very uneasy about working this machine that looked like an IV pole. You feed the feeding tube around a little wheel that made the food drip out. Next you selected how fast you wanted the food to drip into her stomach, then we inserted it into the peg tube into her stomach. The hospital was very clear about keeping the hole clean. We were to clean it gently with cotton balls two times a day soaked with peroxide and sterile water. Then we were to cut a 2x2 piece of gauze and put Vaseline on it and cover the place between the peg tube and skin so it wouldn’t irritate her. We did this for years. After a few weeks I could probably have done it blindfolded. But at the time it was so scary. Then we thought she might pull the tube out. What would we do then? We were very apprehensive about the whole thing.

One day after a few weeks, she pulled the tube out. We all freaked out. There it lay on her chest while she lie in bed peeking up at us. The bulb attached to the end of the peg tube that goes into your stomach was staring up at me. I am ashamed to say I was a little repulsed by that sight. I would soon get used to it.

We called the doctor immediately and he gave us an appointment right away. When Mom and Dad took her to the doctor she told him about how she used to take Donna to Piccadilly once a week. He said she could eat regular foods once or twice a week, but not to give her too much of her canned milk that went into her tube or it could make her sick.

      The Nurses

We got the first CNA around 2005. I hate to say this but I do not recall her name. She stayed about to days and that was that. People who aren’t used to someone like Donna who yells and screams and flails their arms around when they are upset about something, get nervous. Anyone would. We just were so used to it and knew when she was sad or mad or hungry or sleepy, it was no big deal.

It was actually very awkward for me to have the CNA’s around at first. I know it sounds crazy because it would be extremely difficult for me to go to someone’s home and help care for someone’s loved one. Imagine going into someone’s home and having people tell you how to take care of their loved one. Perhaps they had certain rules or protocol. What if the family was unkind? What if they were snobs? You really don’t know what you are getting into.I really would feel uncomfortable doing that. I think it takes special people who can understand the needs of not only the patient, but also the family. I didn’t know what to talk about or ask them. I didn’t want to tell someone that I did not know how to help care for Donna. Mom felt awkward at first also. She didn’t know what to tell them to do, so she just showed them Donna’s everyday routine.

My mom did something before each new CNA came to into our home. She prayed. She prayed the Lord would send us honest, trustworthy people that she could leave her daughter to for a few hours. Donna was taking a lot of different medications and she did worry that someone may want to take it. Mom never wanted to think things like that, but there is an ongoing drug epidemic in this country and Donna needed her medication. That’s why she prayed. She wanted someone we could trust. We all did.

          Anita

The second CNA was a woman I’ll call Anita. She had been in the army and her children were grown and now she was living here with her husband. She had a great smile and was dark, with high cheekbones and very strong. She’s the type of person who is capable, strong, and authoritative. Anita had dark hair streaked with some gray and was the most efficient and hardest worker other than my dad I have ever seen. She would get Donna up, take her outside to get fresh air and draw pictures with her. She took notice of Donna’s room. “Carol,” she told my mother,” I think if I changed the room around a little bit it might make the room more cheerful. I think if the bed is moved closer to the opposite window it would look really cheerful. I think it would make Donna happy.” Mom grinned. She loved that this woman was expressing such an interest in her daughter. “Anita,” you have the run of the house,” Mom said. Anita wasted no time and by that evening, Donna’s furniture was rearranged. And Donna loved it. She loved the attention of this new person, this bubbly, bossy, and happy woman. Donna had not gotten to go to church in years because of the trouble loading and unloading her. Even though the church had a ramp, we’d have to get her out of the car and back in the car after church. It was too much trouble we all thought. Not for Anita! She insisted we take her to church. “I’ll help do everything.” We believed her. True to her word,  Anita got Donna ready and put on a nice outfit. We had trouble convincing her that she couldn’t wear a dress. The last time Donna had worn a dress was probably a decade ago because she really liked pulling it up and chewing on the hem. Wouldn’t that make for a great talk after church? In my head I could hear all the old Baptist women and gray haired men talking about the poor unfortunate Hutchins girl. “They took her to church and she pulled her dress over her head!” That’s when Mom had to put her foot down. “Sorry, Anita, but she cannot wear a dress. Undaunted, we all went to church that Sunday morning. I remember halfway through when Anita took Donna quietly (as quietly as she could) toward’s the door. I wondered what was going on. I realized after church she changed Donna’s diaper. “How?” I had no idea where she’d put her. You have to keep in mind Donna would have been about five feet tall if she could straighten her legs out. And she was a dead weight. Mom told me that Anita somehow changed her while she was in her wheelchair. She somehow rolled a diaper under her and took the old one away. Over a decade later I still don’t know how she did it.

One Sunday after church my parents found Anita raking leaves! Donna was on the porch with a little jacket on and Anita said the yard needed raking. “That’s not your job, Anita! I will do that. You need to come on in,” my dad said. He was flabbergasted that this woman was out raking our leaves. It was not at all in her job description. All she was supposed to do was look after Donna and make sure she was bathed. She merely said she needed some fresh air. We thought this was the funniest thing ever.

One thing Anita did is make these wonderful crafts with Donna. She made me a little photo album that said “Angela’s Stars” on it. She used glitter and made a cover out of royal blue cloth. When my sister, Delores came into town for her birthday, Anita had a bouquet of flowers made out of colored tissue paper from Donna. Anita should have worked in a school with children or been a special education teacher. She was very kind. She also had a great smile and was genuinely happy working with Donna.

She stayed with us for a few months and when the insurance company said they would probably cut out the CNA’s, Anita went to work on the problem. Within a couple weeks she had four state representatives come out to our house and meet with my parents. My mom was in shock. How could this down-to-earth country woman get so much done. Anita laughed and said she was persistent! “They put their pants on one leg at a time, just like we do!”

We all loved and respected Anita, but she didn’t stay long after that. She moved away to help her husband take care of his mother. I haven’t heard from her in maybe 13 years. I would love to tell her what a positive impact she had on me and my family. Her kindness and hard work surpassed anything we had expected. I would love to say to her that she would always be remembered.

                                            The Right Fit

We went through a few more CNA’s for a few months. One lady was from a country in Africa. I feel badly because I cannot remember her name. She was very nice and interesting. It was like someone brought culture to East Tennessee. She talked to me about where she was from, and how different it was here in the U.S. She talked about her family and her children. She was very sweet and for Donna’s birthday she bought her a bottle of body wash and some lotions. I thought that was very kind of her. I remember I liked sitting in the kitchen with her and Donna so I could listen to her talk all day because her accent was so beautiful. But as fate would have it she did not stay more than a few weeks. She started a new job. I was really disappointed because I liked having that neat culture in the house.

Helen came to us a few weeks later. She was divorced and had a daughter. She had grandchildren whom she was very proud of and was very sweet. She seemed kind of sad deep down. I think she was a lonely person. She was reed thin, very tall, and a little distant at first. But coming into someone’s home can be very hard I am sure. She worked hard, but she seemed like she may not be able to physically handle Donna. Donna was heavy for anyone to life, but especially someone who seemed so fragile like Helen.

Helen and I became friends even though she was twice my age. I liked and respected her. I even went to her house once. It was immaculately clean. I felt like I was at my grandmother’s home it was so neat. I even met her young grandchildren. She talked more to me than to my mother or anyone. I respected and thought she was a nice lady, but she seemed so vulnerable and sad on the inside. I wanted to help her and be a real friend to her. She only stayed a few short months. I think the job was too physically demanding and she was probably in her fifties and looked so tiny that I could see she was not up to the job. I knew that she wouldn’t stay very long anyway. We all tried to make her feel welcome, but I think she just didn’t like the job. I feel like she was fond of Donna and my parents and myself, but if your work isn’t fulfilling you sometimes have to move on. We went through a few more CNA’s and then we got that perfect fit.

Hand In Glove

Mom prayed again for someone that Donna would like and we would like. She prayed that someone would enjoy helping us and God found someone! Alicia was nice, funny, smart, strong and loved Donna. We couldn’t have asked for anyone kinder to Donna and that fit into our family any more than she did. It took her about two weeks to get settled in and get to know Mom and my Dad and me. Because when you work in that kind of environment the family is very important. If you can’t mesh well and see eye to eye on things, it will not work out.

Now Alicia spoke her mind about things also. If she didn’t like something, you knew it! But she was not hateful or mean at all. She was the type of person that would go tell you to brush your teeth because your breath stunk! (She really did once) and I thought nothing of it except that I would not eat garlic mashed potatoes around her again. I really loved her. She was about six years older than me. She was raising her children on her own. She was a very strong independent woman. She affectionately called Donna “D.” That’s what she called her for four years.

She gave “D” her bath and was the only person besides me who Donna would let wash her hair. She tied Donna’s shoes in double knots, because she had young children and was used to doing this. I didn’t think anything about it, but Mom and Dad thought it was very funny. “I guess she thinks Donna’s just gonna run out of her shoes!” They’d say. Alicia was funny and warm and and Donna knew it. She enjoyed being made a fuss over by Alicia or any of the CNA’s. Alicia and I got along very well. Sometimes I’d stay home to sit and hang out with her because she was such fun.

 We got to have her in our home for four years and we enjoyed  it. We got to know her children and her sisters. We still talk through social media, but it isn’t the same. She moved about an hour away so we don’t get to see her, but I do miss her. Alicia was part of our family for four years. She became like another sister to me. One day I mentioned my pants seemed snug and I tried stretching and I busted the whole butt out of my pants! She and Mom laughed so hard. Times like that were wonderful with her.

The Dentist

I had completed my dental assistant training around the time a non-profit group called The Arc of Washington County decided they would take Donna to the dentist and pay for it. The cost would be considerable because Donna was not like your average patient. She would have to be completely sedated to perform any fillings, extractions, or possibly x-rays on her. She had the strongest teeth I’d ever seen. When I was about twenty I was giving her medication, when I noticed she spit out one of her pills. I tried slipping it in her mouth and she bit me so hard I thought my finger was gone! I actually was on a cordless phone with my friend at the time. She said she heard screaming and that was it. Actually, I threw the phone onto the couch, for fear I may hit Donna with it. When someone has your finger in their mouth like a vice-you get really upset! I was afraid I may hurt Donna just from reflex. And I wouldn’t be able to forgive myself for that. I pushed her jaws together and freed my ring finger. Was it gone? How could I tell people my sister bit my finger off? It was there, thank God! It was just bruised. I went outside and tried to tell my dad what had happened, but all I could do was roll around on the deck and growl. The dentist would have to take the strongest precautions necessary for this patient!

The next week I went to the dentist with Donna and my family when they were going to take the first x-rays of her teeth. It didn’t go well. She crunched down on the bite wings (x-rays) in her mouth, and my mom had a stomach ache and had to leave. It was so bad they had to put an out of order sign on the bathroom door and I wanted to die of embarrassment! We took Donna home and told Mom next week they’d be putting her in the hospital where they send the dental patients for a few hours and they’d have to do it all at once.

The day of her appointment started out well. My parents had to put her in the truck with her wheelchair in back again (Oh how embarrassed I got over that). I had to be somewhere so I couldn’t make it. When I got home my mom was very irritated and Donna was too.

“What happened, Mom ?” I asked as I saw the blood on Mom’s arm? “Well they cleaned her teeth then extracted three molars because she ground them down to a nub. Then had to do nine fillings and when she was in recovery they said she was their favorite patient. They said she was like an angel. Then all her medication wore off by the time we loaded her in the car and she got that real wild look in her eyes and tried to grab the steering wheel and then she pinched me a few times till I bled. Thank God your daddy was driving and not me! Those ladies at the dentist office wouldn’t have believed this! And if Larry don’t get home with her medication I am gonna scream!”

Suddenly Alicia walked through the door. “Aww, D you had you teeth done today, didn’t you? Poor baby!” Mom rolled her eyes and looked at her own bloody places on her arms. Then Donna let out a cry that mimicked a baby’s and a tear streamed down her face. She loved Alicia and me for two days and tried to bite Mom and Dad. In her mind Mom and Dad had done this horrific thing to her and she was not happy.

Luckily in a week or so she was healed up and got to go to Piccadilly and eat spaghetti and butter  bread. I am pretty sure we took her to the dollar store in the mall and got her a balloon too.

           New CNA’s

Alicia quit working for our family and it was hard on us, but Donna was very upset. She’d cry and get upset and the cry was a sad one. When you have a family member who’s only communication is through laughter, crying, and a few moans, you learn fast which means what. I think she felt that Alicia had abandoned her. But home health is a hard business. You may get used to someone and then that person may move, need more money, or be transferred somewhere else. That’s just the way the home health business works.

We had a few ladies who came for a few days and either didn’t like it, or didn’t like the pay and left. Then we had a wonderful lady named Stephanie.  Stephanie was a very kind hearted, friendly, Christian lady. She lived about thirty miles away after the first few months and moved even farther away. I think she drove about ninety miles a day to sit with my sister. I’m not even sure if she got mileage or any compensation on her driving.

Stephanie made sure from the get-go Donna had everything she needed in her room. We had some things like body wash in the bathroom. When Stephanie came in we put washcloths, powder, deodorant and anything else she may need in the basket on her dresser. Stephanie was always making sure Donna wasn’t going to run out of wipes or anything so she always seemed to have a list handy. She was very kind and treated Donna like a little princess. Sometimes she would even cook. She made soup a few times and that year during Thanksgiving she made a really good cake. Donna really loved her. We all did, but  eventually she had to leave. I think it was the drive. I couldn’t have done it, but she did and her kindness will not be forgotten.

I have some good memories of laughing and talking with her. Stephanie and I just taking the way woman do as Donna would watch us.

          Lori

Not too long after Stephanie left Lori came to us. She had the most beautiful naturally curly hair I’d ever seen. She was very quiet at first, but soon came around. She was close to my age, so we talked a lot and had a lot in common. Donna really liked her and we all got along. Mom and Dad really liked her. She was also a good cook. She made several desserts that were really rich and delicious. I can’t remember how long she stayed with us. I think it was close to a year. I remember we were all sad again when she left. Each time a CNA left it never got easier. That’s because we had such wonderful, kind people working with Donna. We never had to worry about anything when we left her in the care of these ladies. Once again, she is someone I talked to on social media for awhile after she left, but I do miss her.

Lori was the last permanent CNA we had. We had a few people come and go after her, but it wasn’t the same. I think she got a better job and I was really glad for her, as good jobs are hard to come by in this neck of the woods. We all wished her well and Donna got a little sad again, like she always did when someone dear to her left.

March-May 2013

Lori left us in March 2013. That was the year I was getting married. We thought June 1st sounded good and would be easy to remember. My husband Tyler, and I had dated five years and we were ready to get married. I did have a request: I only wanted it to be us at our ceremony. I didn’t want a wedding I wanted a nice honeymoon.

I kept telling Mom I would still wash Donna’s hair two times a week if she couldn’t find a permanent CNA to help do it. And even if she did, I knew I would still be needed, and I liked that.

I remember there were about three different CNA’s that came through May. There just wasn’t anyone who was a right fit. Either someone didn’t like the hours. The hours were 12:30-6:30 Sunday through Friday. They were strange hours, but Mom and Dad were of retirement age and wanted to sleep in and not worry about getting up early. But there was only one day off and that was a bit of a problem. They would work on that.

Meanwhile May 18, 2013 I had a little bridal shower. My husband’s mom and aunt did it for us. Everything was beautiful. They had hydrangeas and tiger lily’s on each table. They both knew how to make gorgeous flower arrangements. My mother in law made chicken salad sandwiches. Donna was there and she ate four of them and some cake! We were all proud to have her there. My oldest sister, Delores and her daughter was there. It was a wonderful day. That night, my other niece came in and noticed Donna was coughing. I didn’t think too much of it and went to bed later.

Three days later I went to buy stamps to send thank you cards out when Mom called my cellphone. “I’m going to call the ambulance, Donna Jean’s very short of breath. It will take awhile at the hospital so get me a hotdog.”

I walked into the hospital like I had a hundred times before and the doctor said she did not have pneumonia but he was treating it as pneumonia. He took a chest x-ray and did not find any pneumonia, but gave her a z-pack and another antibiotic to be safe. They did not admit her this time.

                                                    May 23, 2013

The day started off like any other. I went to the post office to mail my thank-you cards for my shower gifts. I went and got Mom something to eat. My phone rang when I got home and it was Tyler. The new CNA had been there a couple days and seemed nice. She had just walked into Donna’s room. She was yelling at me. “Have you seen Donna?” “I checked on her before I went to the post office and she was asleep.” “Get your mom-now!” I told Tyler that the new lady was probably just high strung and then I went into Donna’s room. “Oh my God! She’s not gonna make it!” I hung up and called 9-11 and ran into the bathroom where my Mom was showering and she threw her clothes on. Donna’s lips were a dark plum and her face was so white it looked as if someone put baby powder on her. I never saw her look like that. I had never seen anyone look like that-and live.

When the ambulance took her away I knew that it would be the last time she would ever be in her bedroom again. I knew she’d never sleep in that bed. She would never play with her toys. She would never ride in her wheelchair and she would be gone from us.

Mom and I rode in her car to the hospital. I gave the information to the boy behind the counter. I had went to school with him and asked him to pray for us all. We went into the little room they put you in at the emergency room. The doctor asked Mom what her plans were as far as recitation or putting her on a ventilator. “Do you think it will come to that?” Mom asked. “It’s already come to that,” the doctor said.

I got in bed with her for a minute telling her how much I loved her and I hoped I had done enough for her. I sobbed on her bed for what seemed a long time until Tyler came and took me outside.

I was relieved when my cousin Hope came. It meant so much to me to have her there. Lori came also and that meant a lot to me I had no way of reaching Alicia. The doctor told us that Donna had sepsis. “She has an infection that pretty much weakens your whole immune system and poisons your blood. But you can get better with antibiotics. She’s definitely not out of the woods, but there’s a possibility she could make it.” Those words meant nothing to me. I looked at Mom and I could tell she thought Donna would get well. She was clinging to any hope a mother has when their child’s life is at stake.

I talked with Mom and Dad and we all agreed we did not want to put her on a ventilator. We decided that we would leave it up to God if the worst happened. I remembered I had Stephanie, the CNA’s phone number. I remember how kind she was and I asked Mom if I should call her. “Yes, call her. But it’s late. Don’t have her come all the way over here.” I talked to her and told her the news. “I can be there in an hour! Don’t worry.” I told Mom she was coming from her new place and that it was about a fifty mile drive. “Well, that’s awfully nice.” That’s about all Mom could say.

Stephanie came and we all went to McDonald’s for coffee and to talk. “Angela, she is not going to make it. I have seen it a hundred times. I can tell your mom thinks she is.” All I could do was nod my head. “Before she goes, she will make a terrible wheezing sound. Kinda like coughing. That’s what they call the death rattle. When that happens be strong. It may go on for minutes or hours, but that is what that sound is.”

Stephanie stayed all night. We talked and prayed and reminisced about the time we had spent together. The room was kind of dark. They wanted to call hospice in. Mom wouldn’t let them because once they called hospice, they took her oxygen off and Mom was not ready yet. I had called my sister, Delores the day before, when everything started happening, and she was coming in soon. It was already Friday by the clock, so I figured she would be arriving early in the morning. I talked to the nurses, they all knew what was going to happen of course. They brought in some folding chairs and somebody brought in fruit and coffee. I think it was the hospice people. I remembered what Stephanie said about the death rattle and noticed that Donna had been very quiet all night. Something inside me said “It’s not time yet.” I told Mom since it was morning I was going home to check on the dog and be back within the hour. Dad had been here all night also, so I just left quietly.

The whole drive home all I could think about was how beautiful the day was. It was almost June, flowers were blooming and it had been warm. It was such a beautiful day. The sky could not have been bluer, the air smelled sweet, the dew was still on the grass. I prayed, “Lord please do something for me. I know she’s going to die and I love her so much. Please don’t let it rain today. And when we bury her please don’t let it be rainy.” I don’t know much else about what I said, but it was one of the most serene prayers that I had ever prayed. I felt like God was sitting in the passenger side on the way home. I think I prayed this prayer when I showered and looked into Donna’s empty room. On the way back to the hospital I was more confident. I was still weeping, but I felt like God was saying “It’s ok.” I talked to my best friend Ashley. She said she’d be stopping by the hospital. Ashley and I had known each other about eighteen years at this point and shared everything. She knew how much Donna meant to all of us. She also has a special bond with my mother that I find truly touching. Sometimes you don’t have to be a family member to share a great bond. You just have to have a deep understanding and sense of empathy to have that bond.

I got to the hospital and we all just sat around crying. My sister Delores came and it helped Mom so much. Delores’ youngest daughter went to our house because she was a little afraid of death and hospitals, but she was only about fourteen. My oldest niece was eighteen. She had Mom and Delores and me all held each other. Delores said “Hey Donna Jean!” And she flickered her eyes! I cannot fully explain it, but she knew Delores was there to see her. She made it known to all of us. Delores and Dad and Mom hugged.  He never cried because he was so strong. Sometimes I think my father is the most mentally strong person I have ever known. In between bouts of crying I did what Stephanie said to do. I listened to Donna. She still made no sound. She was as white as snow.

My uncle Joel came in and said a beautiful prayer and although I can’t remember it, I remember being very touched by his words. He is my Mom’s brother. Joel is around six feet five, and he got down in the hospital floor and prayed so beautifully it was as if an angel were in the room. My friend Ashely was there and said she’d known him for so many years she couldn’t believe how beautifully he could pray.

Delores had been in the hospital for a couple hours when she and Mom went outside. I stayed in Donna’s room with Dad, my niece, Jordan and Ashley. We were talking when I heard a wheezing sound. “Oh this is what she told me! The rattle! Get Delores’ cell phone. We were trying to reach my sister’s cell phone when Donna, Dad, Jordan, Ashely and I held hands in prayer. We prayed for the Lord to take her. We said we loved her. We said we loved the Lord and I can’t remember what else, but I remember the way my sister looked. Donna looked like an angel sleeping peacefully. She looked like someone who was going to take a short nap. I felt the presence of God in the room so strongly. It was such a powerful presence that if you did not believe in God, you surely would have that day.

We all cried and hugged and kissed. This was the most peaceful death anyone could have had. It was as if she walked into Heaven when she breathed for the last time and was sitting at Jesus’ feet. To me it was so fitting for someone like her who never sinned. I am not comparing my sister to Jesus, merely pointing out the fact that she was like a blameless child. She never swore, drank, or did so many things we all have. She had a body that was much older than thirty-four. Even her little feet never even had arches, because she never walked.  

Within moments of Donna’s death my mother and sister came running into the room. Mom was so upset that she wasn’t in the room. I think God had Donna wait until Mom left the room, because I don’t think my mother could handle it. It helped her a little bit over the years when I told her that God took Donna when she stepped out of that room. My dad lost every once of composure and wept. I couldn’t stand seeing my father cry. I held onto him and he said something I will never forget.”I didn’t think it would be this bad when she went.” That man loved her so much. We all did. Tyler helped me find more of Donna’s former CNA’s through Facebook. It felt good to know they would get to be at her funeral.

God answers so many prayers. Whenever I get discouraged and think my prayer won’t get answered, I think of that beautiful May morning that I drove home for a few minutes and prayed. That day was Friday, May 24.  I prayed for God not to let it rain the day she died or when we were burying her. He gave me a gift. It didn’t rain from the day she died until June 1. That was the day Tyler and I got married. We went to Gatlinburg after our ceremony and it drizzled a little bit. I remember saying “Tyler it’s just now raining! I couldn’t bear to put her in the wet ground and God gave me all this time without rain!”  The next day was very rainy, but I guess God had to give us some rain in springtime.      

That summer was very hard. I know it must’ve been absolute horror for Mom. I don’t know how she and my dad did it all those years. They never questioned God or said “Why me?” as we all often do. They just accept everything that comes into their lives and make the best of things. That simplicity is how they’ve always lived their lives. You deal with what you’re given and make the most of it.

I know because I was blessed enough to have Donna Jean Hutchins as a sister I can be a better person. I can see someone who has a disability, whatever it may be and chat with them and wonder what Donna’s voice would be like if she’d been able to talk. I can look around at people and not look away fast, but look them straight in the eye. I can ask if someone needs help or if they’re okay.                 I also know that any small portion of patience I have comes from Donna. That’s one thing you did need with her. But I also feel humbled and happy God gave Donna to us for thirty-four years. And now that I am a mother to a three year old boy, I tell him stories about his Aunt Donna and how much she would have loved him. I also know he would love playing in her wheelchair. But I am also happy that she doesn’t need it anymore.