I Love My Sister...But Society...Not So Much

My older sister, it seems, has always been my “person”. She has developmental disabilities. This seems to make people uncomfortable. Parts of my life were uncomfortable. For instance, I learned quickly as a little girl not to upset her…it was always better to make her laugh. I never sat in her chair or watched her TV, and when we were really young, I never touched her doll. If the doll was misplaced, her world and ours fell apart until we found it. My parents in some way, without ignoring me, made me aware that Janie required more of their time. In fact, my mom stayed exhausted. The goal every day was to keep my sister relatively happy, because if she wasn’t she would cry and yell at us for hours. She wasn’t trying to be difficult. She just could not regulate her emotions. So we all tried to walk on eggshells to keep things peaceful. Some days it worked and some days it didn’t. My life has been tied to my sister for as long as I can remember.

When I was about eight, my sister and I went to play with some kids in the neighborhood. The other children knew Janie was different, but they were not quite old enough to exclude her. One of the older children was laughing at her. I remember feeling unsure about what to do. The girl told my sister to pull down her pants. Janie was going to do what she said as the other children were nervously laughing. I stopped Janie and told her to go home. As I backed away from the laughing girl, I picked up a rock and threw it at her. It hit her in the head. Her laughter turned to tears, and I ran home behind my big sis. The girl’s mother had already called my mom and was talking to her as we ran into the house. I started crying and told my mom what happened. She was not angry at me, and somewhat relieved that I stood up for Janie, yet disappointed that I threw the rock. I never threw another rock, but I became a fierce voice for Janie, and I still am.

One day I came home from school, maybe in the 7th grade. My mom was crying. She had had a bad day with Janie. Nothing could make her happy. School was not going well. She was being teased and stared at. My sister was aware that she was different. The heartbreak for her continues today. She was not invited to birthday parties, had no friends to hang out with, and, no matter where she went, somebody would look at her like she was a freak. Her frustration and sadness created long, tearful nights. My parents tired to find help. There wasn’t any. All that was offered were strong medications to calm her. My parents did not want her doped up, and yet there were days they needed a break. When I found my mom crying, I suddenly became her best friend. I grew up fast and always tried to help my parents find solutions to some of Janie’s problems. Janie began to have seizures. Trying to keep the seizures at bay with meds took a little work and time. I vividly remember my parents’ terrified faces when my sister had a grand mal seizure and fell out of the bed. It was a tough couple of years. I asked my mother why Janie is like this, and she said it was a test from God. She could not explain it any other way. She passed the test, if there was one.

By the time I went to high school, my mom desperately wanted a place where Janie could make friends and have fun. One afternoon, I visited my family’s church. I asked the minister if there might be someone in the congregation who might call Janie occasionally and maybe take her out for ice cream. Without hesitation, he told me “No.” He went on to say she might get too attached. I walked away feeling beat up. When I told my mom about it, she was stunned. She always sang in the choir on Sunday mornings, but that stopped. She felt forgotten and betrayed. I tried to have a normal life, but it wasn’t. I didn’t have friends over because I never knew what to expect from my sister or from my friends. If they laughed at her or looked at her funny, Janie would have been devastated. My mom did not have much time for friendships, either. Her friends just could not understand why she didn’t just “put her somewhere”, meaning some kind of institution. My mom had no desire to put her somewhere, she just wanted her to have some happiness in her life. Sadly, it always eluded her.

I soon went off to college. It was the first time in my life that I was not having to be careful not to say the wrong thing to Janie. I worried about my mom. My dad tried really hard to help, but he was at work every day. He was a public school superintendent. In my father’s search for something for my sister, he became aware of the need for a special place for special students. He created a school that these students could attend until the age of eighteen. It was a first in the country. Although my sister was too old to attend, it was a lifeboat for many other families, and it still is today. My sister wanted so badly to be like everyone else. But she was invisible in so many ways. There were no friends, no boyfriends. My parents would pay people to take her to a movie or out for pizza. No one wanted to spend time with her except my family. There were many days I felt badly about my own good fortune of normal.

I soon was married, and shortly thereafter, my dad died from brain cancer. Every day, my mom struggled to give Janie a happy life, but it wasn’t. My mom was getting tired. She had no help, and Janie had no services. Her Social Security check was too high for most government assistance. For the next several years, my mom paid for assisted living with private pay. We moved her from place to place. The other residents shunned my sister, and her loneliness just moved from location to location. My mom spent her days driving to different assisted livings to visit with my sister, only to be greeted with tears. I could never understand why it was so difficult for people to make an attempt to be kind to my sister. They just felt uncomfortable around her. To most, she was difficult to look at, and more difficult to touch or to even think about caring for her and her hopelessness. It is the human condition to avoid anyone that makes them come face to face with the vulnerable, the hopeless, and the broken. It is much easier to say all babies are sacred before birth, because then you can’t see the sadness, the disabilities, and the looks or the actions that do not fit “normal”.

One Christmas, we took my mom to a facility my sister lived in for only a couple of months. It was developmentally disabled people of all ages. We were the only family there. The staff told us that most of the children were dropped off at about age eight. Usually, she told us, no one comes back to visit. We were a first on Christmas Day. I looked around at the blank stares and cursed the evil of humans. My son was there, he was ten years old. We ate Chinese food on the drive home…on Christmas Day. He has never forgotten the trip. I am asked if all of this is a gift or a curse. It is both. It makes us kinder and gentler, and it makes us too sensitive to a very cruel world. I love my sister, but mankind has let her down.

When I was in my twenties, I spent hours searching and calling possible places that would give my sister some quality of life. I found a Methodist program in NC that built group homes for adults with developmental disabilities. We set up an appointment with them to discuss placement for my sister. They were about to break ground on a home in Asheville, NC. They met with my sister and felt she was a good fit. The catch was that my mom would need to “donate” $35,000 to the home. The money was for a space, but it was written as a donation. We felt we could trust a church-affiliated program, and the new house was in a great location. We were promised lifetime care; this was important to my mom. We waited until the house was complete, and then moving day was upon us. The staff were not trained or complete. The yard was mud. The residents were incompatible. Things were not going well. Then my sister told us that the staff took them in a van to a party, and left the residents alone in the vehicle at night. It was the last straw for my mom. Janie would be returning to my mom’s house without a $35,000 refund. They reminded us that it was a donation. Mom talked to an attorney. Unfortunately, he was also a Methodist.

The next decade was more moving for her. One assisted living facility after another. My mother was spending a fortune on almost neglectful care. Her inability to find a solution for my sister consumed our lives. I revisited the $35,000 donation, and called UMAR back. Someone new was in charge, and he wanted to right the wrong. Janie moved to a lovely home in Winston-Salem, NC. For the most part, in the beginning, it was a happy time for her. Suddenly, her medications went awry. She was slurring her words, unable to walk, and very confused. She fell and was sent to the emergency room. Keep in mind that she was dropped off. I received a call, and in the next several hours I had to prove that I am her power of attorney, and then inform them of her baseline, meaning, what her normal is. Then we go through her long list of medications, how she responds to them, and why she is on them. I was always several hours away, and so it was not possible to be at the hospital nonstop, but I called constantly. I have to go over the information with the continual drip of doctors that change daily. We found out she had sepsis and had developed a toxicity to one of her meds for seizures. She returned to the group home after about ten days. She was not completely back to normal, and they did not want to provide care. After several days, I got a call from the emergency room that the group home had dropped her off at the door. They had the hospital call me about moving her somewhere else. I had not been notified. Things were getting very nasty, and I learned that the man who wanted to make things right had been terminated. A woman had replaced him. He had suggested before he left that there might be an opening at a group home for more intensive care. That was not offered by the new administrator; apparently they prefer residents with large trust funds that go to the organization at the parents’ deaths. They were forced to pick my sister up and give me time to find a good situation for her. The staff was not happy about it. I noticed after a couple of days that my sister was slurring her words. I asked them to please take her to the ER for an evaluation. They refused. I called early the next morning, but the staff would not answer. I called all day. Finally at 6 PM, they answered. They told me that my sister had been unresponsive all day. No one notified me. I was two hours away. I asked them to take her to the hospital. They told me to come and take her. After many calls, someone finally took her to the hospital. She went into intensive care again with sepsis. The group home organization became very nasty. After several days, I found a nursing home in Charlotte that would take her in for rehab. She only had so many days there, but surprisingly, they also took her into long term care.

She is still there today. It is not perfect care, but reasonable. My sister is still longing for happiness. She has no visitors except my family. I have called churches to see if they might consider a weekly or monthly visit. There are no takers on the offer. I have called several Catholic Churches, and there are many in Charlotte, still no takers. If every church asked one soul to do this a year, think of how happy my sister would be. But she is born, and there is little interest in the broken, the lost, the disabled, or the folks really in despair.

After this episode with the church sponsored group homes, I made a call to the state to investigate the horrific treatment of my sister. The denial to take a very sick person to the emergency room, the total lack of concern for her as a person, and the cruel way in which they talked to me as an advocate for my sister. I figured it would be like everything else; neglectful and shoddy. I was very surprised at the seriousness that surrounded the investigation. We spoke several times, and they said they would get back to me. Months passed. I thought that I would not hear from them. One morning, I received a call. They said that they were sorry about what had happened to my sister, and that the judge sided with my sister and I. I started crying. The group home organization was not put out of business, but heavily fined. What happened became public. I hope it changes how they do business, but I doubt it. It is not about care, it is about money.

My mom became ill with dementia several years later. She lived 26 years after my dad died. The many years of private pay and other expenses for Janie left her unable to take care of herself or to move into a facility. As I shared earlier, she was my best friend. I took care of her for three years, then paid for assisted living. I paid all expenses for her. It was not something we had put money aside for. I could not have done it any other way. The first facility was very nice and expensive…but with very shoddy care…neglectful. They wanted the $3500 per month, and wanted me to do the work. I could not be there all the time. I called an ombudsman in the area about another place. She said, “There is a small place that looks over the Blue Ridge Mountains. People never leave, they die there. They have never had an infraction.” I went to visit this twelve bed facility overlooking pastures and the mountains. It was full, but the owner said he would put me on the waiting list. Three months later, I received a call from them: they had a room for my mom. The care restored my faith in humanity. Yes, she died there on January 6, 2016. On Christmas Day, angels were in her room. On that Christmas night, she grabbed my hand, and it was as if the dementia was gone for a few moments. She cried and talked to me about Janie. She was so worried about her. She said life had been so very hard for her. I knew this. I hugged her tightly. I told her I would always be there for Janie. I do my very best. On the night my mom died, I left her room to go sit in the car with my son and eat some Chinese takeout. My husband was inside with the Hospice nurse. As I was opening my food and looking out over the twinkling lights across the mountains, I felt cold and dizzy. I asked my son if he felt it. He thought I was just tired. It happened again as my husband walked towards me. My mom had died minutes ago. I think what I felt was her soul hugging me for the last time. My heart was broken. I then had to figure out if I should tell Janie.

When we have children, we must decide to love them no matter what. It is not fair to innocent children to bring them into a world that does not love them. Some people can do this, and some people cannot. Some people cannot love a child in utero. They continue to drink and do drugs, with no care for the baby. Life is full of gray areas. Until we, as a society, can decide to love born children that need help, we need a choice for women. I am not suggesting in any way that my mom should not have had my sister. In fact, it seems that her problem occurred with the measles and a very high fever. My parents were capable of loving my sister to the very ends of their lives. My husband’s mother, however, is incapable of love. It is disingenuous of us to force children into lives that are truly hell on earth. I love all children, but I have seen the saddest parts of so many lives. Parts many humans never see. To judge what one does not know, and then to walk away from a sad outcome, in my opinion, is a far greater sin than an early abortion. I am not pro-abortion, I am pro-choice. In many ways, I am truly pro-life…a life, however, that every child deserves.