Today I bring you a guest post from Cindy Cunningham. I met Cindy through my memoir, Dancing in Heaven, as she explains below. From time to time readers of Annie’s story have contacted me to share their own story. I’ve decided to share with you any stories I receive for which I have permission to do so. My plan is to create a permanent page on my blog with links to these stories. Thanks in advance for reading Cindy’s story about Vera.
I live in southern California, but home is just north of New Orleans, LA. Most people who don’t live in Louisiana hear New Orleans and instantly think big city. I actually grew up in a very small rural area called Covington, which is north of New Orleans, just a stone’s throw away from the north end of the Lake Ponchartrain Causeway, which separates New Orleans from country living.
My children, identical twins, Aimee and Jaime (now 32 years old) and my son, Scott (now 34 years old) along with their children and my parents who are now 75 and 78 still live in Covington. Our grandchildren either fly out yearly to visit us or I fly there and visit them. While my 15-year-old granddaughter was here on a visit she told me she had to read a memoir for her upcoming honors English class. I searched around and read several introductions and found yours. We both began reading and memories of my own childhood came flooding back.
My grandmother became a wife at the age of 15 and was eventually the mother of six children. Each child was born at home, a house with a beautiful high ceiling my grandfather had made from the logs he had harvested over the years. Back in the 1930’s in rural Louisiana there just weren’t hospitals and doctors to care for you. My grandmother did manage to get a midwife to attend the births. Each and every one went smoothly until my Aunt Vera was born. May 29, 1938 changed my grandmother’s life forever. The birth wasn’t going smoothly. The baby just wasn’t entering the birth canal correctly and in desperation the midwife took an ironing board and pressed on my grandmother’s stomach in an effort to make the baby move. Eventually the baby was born, but severely damaged. My Aunt Vera had cerebral palsy. She was a beautiful baby, just a baby trapped inside her body. Nobody knew enough back then to help her. She never got to attend school and was carried by my grandparents everywhere they went. She couldn’t lift her head or straighten her legs or control her arms. She sat in a rocker with a cushion in my grandmother’s kitchen as long as I can remember. Her bed was a twin bed placed along the wall in my grandparent’s bedroom. She slept in that bed until the day my grandmother went to awake her as she had done for 55 years. I remember clearly getting the call that Vera had passed away. My initial thought was “How will my grandmother live without her?”
Growing up, Vera was always there. I saw her disabilities, but they were who she was. I watched my grandmother carry her from her bed every day and put her in her special rocker in the kitchen so she could be with everyone all day. Around noon it was routine for her to be moved to another rocker in her bedroom (also my grandmothers bedroom) so they could watch their favorite soap operas. I would visit when I got older and mention a soap star to Vera knowing she was all into it and would be excited about my opinion. She would light up and rock back and forth and try so hard to make words come out. Words always eluded her. Only grunts and noises would surface. Sometimes she would get so angry because she couldn’t express her feelings and she would get flushed in her face and finally her body would go limp and she would fall back into her rocker with the look of defeat. I wanted so badly to give her the gift of speech.
My grandmother told me stories of when I was little and would play around Vera’s chair and poke her and laugh and hide. She said Vera loved it and laughed along with me. Growing up seeing her so disabled was a natural thing for me, but it didn’t stop me from wishing it had been different for her.
One of my fondest memories is of going to church with my grandparents and Vera. They attended a Baptist church in the country and Vera had a special rocker to the right in the front row. My grandparents would sit next to her during services. Everyone would come by and speak to Vera and she loved it. The church family was a big part of her life.
It seems my entire adult life while I was raising three children of my own, I kept Vera in my thoughts. Every time I was out and about and saw a raffle or something that I thought might make her days brighter I would enter her name. I remember once my grandmother called me and asked if I had entered Vera in a drawing. I had so many times that I just said yes. She said that K-Mart had called and asked to speak to Vera and she told them that she couldn’t speak because she was handicapped. They told her that Vera’s name had been drawn for a huge 4-ft pink energizer stuffed bunny. I had to laugh. My grandmother had someone pick it up and when activated it clapped it cymbals together and marched. I was right. It did brighten her day. No matter how trivial it was to most, it made her laugh.
Vera had about twenty baby dolls and my grandmother would dress them for the day and lay them out for Vera to see. She would pick one and insist my grandmother place it in her crooked arms. She would then rock it for hours. Once I got her an anatomically correct baby boy doll and she loved it. She laughed so much when she saw it. The other thing she loved was punch balls. My grandmother would tie the band to her finger and she would use her dominant right arm and swing it around. As with your sister, Diane, Vera’s right arm was always the stronger one. She could swing it back and forth, but it always ended up curled up like the left one. Her back was always hunched over and her legs crunched up too. She was almost in a fetal position. I use to wonder how her back didn’t kill her.
One Christmas I decided to buy small trinkets for the twenty-four days leading up to Christmas. Vera loved Christmas and no matter how old my grandmother got she always went all out decorating for Christmas. I also bought a hanging shadow box that on the 25th day would be given to Vera to put all of her trinkets in. I made up poems about the trinket of the day and mailed it anonymously to Vera. When I visited she was so excited about the trinket of the day. Neither she nor my grandmother could figure out who was sending them. The buildup was grand and it did my heart good to see their excitement. On Christmas day I brought the shadowbox over, and revealed myself to them. Vera was so excited she was beside herself.
Looking back I think of all of the things I did to try and make Vera’s life happier. I think maybe on top of her being happier, it healed my heart in a way. Imagining a life being trapped inside yourself with no voice or control over your limbs was so heartbreaking for me. She deserved better and I couldn’t give it to her.
Vera died June 8, 1993. My grandmother was 79. I thought about how my grandmother would, for the first time since she was 15, have freedom. But how much freedom can you have at age 79? Her health wasn’t good and she had always put Vera first.
Reading your book about your sister made me cry, made me laugh, and made me realize that there are so many Vera’s in this world and you and I were lucky enough to have them. My life is so much richer because of Vera. Her life was not a waste. She touched so many lives in so many ways and her legacy will live on. So will Diane’s. I miss Vera every single day, but I know the day she flew away that she was whole for the first time in her life. She could walk and sing and God was rewarding her for what she didn’t have here on earth.
I have several things I could post about: our trip to Buffalo for our son’s wedding, Lumenocity photos and video. I have a lot of photographs I could share from my 365 project and scenes from Buffalo. And I’ve been debating back and forth for a while now whether or not to share what has really been on my mind first thing in the mornings the past two days. I think I will.
On April 10th I received a message on my Facebook author page from someone named Karen. She wrote, “I just finished reading your book last night and I cried and cried….All through the book I kept thinking, ‘I wish I could talk to her”. I have a few things in common with you. I have a daughter who is 14 and has severe Cerebral Palsy.'”
It touched my heart that she reached out to me. Meeting people like Karen has been the greatest reward of publishing Dancing in Heaven. We corresponded a few times. I explored her Facebook page where she often posted updates about and photos of her daughter Jessica.
On Sunday night or Monday, I read a post from Karen that came across my news feed. She wrote, “I don’t know how to go on without her. She was my life. Please, Jessica, help me.” I feared the worst and my fears were confirmed when I read through Karen’s news feed and saw message after message of condolence.
Jessie died Sunday morning. I read her obituary that Karen had posted.
I struggle with the message I’m trying to give you. But it’s something along the lines of what I believe to be a vast difference when a special needs child dies. There is a bond there that has been strengthened and tested in fire. There are so many aspects to it that most people never have to think about. And sadly, I am not finding the words to adequately explain.
I always feared that others would only see Annie’s disabilities and not her value. That’s why I wrote Dancing in Heaven. I always wondered if others would focus on the care giving my parents gave Annie, and perhaps even think in some corner of their mind, ill-illuminated or not, that perhaps there was a sense of relief that the care giving was no longer required.
I don’t believe you will find this to be true for any parent who loves their special child.
My heart goes out to Karen and her family. And the primal anguish in her words reminds me of what my parents must have felt when Annie died, four years ago now, on Friday.
Dance in heaven, precious ones.
I had a couple of heart burdens to take care of yesterday.
I made what might be the last trip to my parents’ house to accomplish the last few things I needed to do, mostly picking of the last stragglers I plan to keep or return to relatives. Even though the interior of the house looks completely different than when my parents were living there (much furniture and most small items are gone, the walls are all painted, and there is new carpet throughout, all the original artwork from relatives and photographs are off the walls) Mom and Dad’s presence hits me like a punch to my gut when I’m there. And all the memories we made over 33 years fill each room. It’s hard to be there.
It will be hard never being there again.
Fortunately Mark was there with me. He followed me around in silence.
The second heart burden was a trip to the cemetery where I haven’t been since the day of Dad’s funeral with it’s gun salute from the Korean War Veterans. The cemetery is a little over an hour’s drive from home. We planned to make the trip to check on the gravesites and make sure no dead and dried up flower bouquets were still hanging around. We also planned to plant grass.
Although I had dreaded making this trip, the cemetery visit was actually much easier than I had imagined it might be. I don’t feel Mom and Dad’s presence there at all. I have a couple of memories of taking them there to visit Annie’s grave, but their presence does not linger there.
The graves were clean and neat and looked like fresh top soil had recently been applied. Mark walked around on them to test how compacted they were and decided they were not ready for grass seed yet. They still have some settling to do.
The gravestone is shaded in this photo, but you might be able to see that it has not yet been engraved with the death dates. We didn’t know if that was something that was prearranged or if we needed to call someone to do it. We decided to stop by the cemetery office on our way out to find out if and when they planned on seeding the grass, and what we needed to do about the gravestone.
The short answers are that they take care of the grass and will continue to add soil to the graves as it settles over what usually takes about six months. Then they will plant the grass. We need to contact the gravestone provider who will contract an engraver to come out and take care of the stone.
But here’s the bright light in this otherwise rather dull and somewhat gray post. I inquired about little WWII and Korean War marker flags I had seen at grave sites. The man at the office was very friendly and told me the cemetery provided those and they would put one at Dad’s grave since I’d asked. He then proceeded to ask me for the identifying information. I had already explained that both Mom and Dad had died in January.
“Where is this grave exactly?” he asked me. I told him it was near the back corner of the cemetery. It was beside another Smith gravestone of my aunt and uncle’s, and it was a plot with three graves on it. I explained about Annie.
“Now I know which one it is,” he said. “Some of the people who were hanging around after the funeral were talking about your mother. They said she took care of her daughter for a long time.”
“Yes,” I said, “she took care of her for 51 years.”
“She must have been a real gift,” he said. “I couldn’t do that.”
And before I knew it, the words were out of my mouth, “Sure you could,” I said. And then I caught myself and added, “That’s what she would have said. That’s what she always told people who told her that they couldn’t do it.”
“Yes, you could,” Mom always insisted. “Yes you could.”
We all love bright blue-skied days full of joy, peace, contentment. But in life we have our gray days. Sometimes we even have very dark days where we can barely see past the next minute that faces us, let alone the next day, the next step. In recent weeks, even months, with my mom struggling to care for my dad with Alzheimer’s whose abilities have continued to decline, the gray days have grown ever darker.
Even with an increase in the hours of home health aide help, my mother’s strength and overall health continued to decline as she persisted in taking care of my father. She was in trouble, and we all knew it. The last week of November I ramped up my time at their house and spent 4 out of the 5 weekdays there trying to step in for her with Dad’s care. My sister relieved me on the weekend, but called me Sunday morning, December 2nd.
“Mom thinks she needs to go to the hospital,” Carol said.
“I’ll be there in a half an hour.” I was already dressed, found a pair of shoes and left immediately. Carol met me at the door and said, “She doesn’t want to go to the hospital today anymore.” Mom was lying on the sofa looking pale and lifeless. I sat down beside her legs and spoke softly to her, trying to convince her to go. I handed her the phone and asked her to call 911. I wanted her to do it. I didn’t want to force her into anything.
“They’re probably not going to keep you,” I said.
“But you don’t know everything,” Mom said.
I did know that Mom has suffered from stomach or digestive problems her entire adult life and has always been very careful about what she eats, avoiding foods that cause her problems. But she’d gotten to the point where the only foods she could really tolerate were toast, cream of wheat, cheerios, and a turkey sandwich. She was taking every over-the-counter remedy available, but had continued to refuse to see a doctor for three years.
“What don’t I know?”
“A couple of days ago I found a lump here in my abdomen around my belly button,” she said.
I took the phone out of her hands. “You can’t tell me that, Mom, and expect me not to take you to the hospital.” I called 911 because she wanted to go in an ambulance and not wait in the ER. She simply felt too bad.
I stayed home with Dad.
The first phone call from my sisters at the hospital with Mom were optimistic. Her blood work and another initial test were good. Her stomach problems were related to her nerves, we all thought.
In the second phone call my sister told me that Mom’s cat scan showed that she has cancer throughout her abdomen.
And my world went pitch black dark.
Mark packed a bag for me and brought it up. I temporarily moved in.
Mom came back home that evening because even though they wanted her to stay for testing, she wanted to come home. We found an oncologist and scheduled some outpatient testing. Meanwhile Dad started having problems and by Tuesday night we were so concerned about about his rapid and shallow breathing that we called 911 for him. He spent six nights in the hospital on IV antibiotics. We took turns staying with him or with Mom so that neither would be alone overnight.
On Monday afternooon when Dad was discharged from the hospital, he was moved to a local nursing and rehabilitation facility. I went with him bringing the basket my sister had packed at home of his labeled clothes and a few personal items from his “office,” a card table beside their living room window.
“When you leave here,” I began to tell Dad daily the last few days he was hospitalized, “you’re going to move to another place where you can do rehab.” I was very careful now to avoid the “home” word, like we were with Annie when she was in the hospital.
At first the move to the nursing home seemed okay, even fine. It was a little more home-like than the hospital. His roommate is also nonverbal and looked like he slept a lot. A nurse station was down the hall. I moved Dad’s clothes into his closet and drawers while the staff got the initial admission things done. They asked me if he wanted his dinner in his room or in the dining room. I had heard that it was good for residents to get out of their rooms and eat in a social environment so I said, “Let’s take him to the dining room.”
I wasn’t in the dining room two seconds before I realized my mistake.
The residents who need assistance eating are assigned tables at the far end of the room. These are not the people who are able to sit upright in a chair and have conversations. When Dad saw where he was, he started to cry. And so did I. I imagined he thought, “How did I get here?” I think he may even have been horrified to find himself in a place where so many people were so disabled.
But it was too late to turn back now.
I pushed him to his assigned table near a big window. A woman, P., was already there and waiting. She is a tiny little woman in a large well-padded chair with head supports on either side. She didn’t move a muscle except for the fingers of her hands which held a soft white stuffed kitten that she gently squeezed from time to time. She watched us, but said nothing. I smiled at her, but got no response.
H. arrived at the table next. He sat across from Dad. He was in a reclined geri chair, had sores all over his head, and his mouth was trembling constantly with some kind of palsy. He didn’t say anything.
I felt myself falling apart. Mark had met me there and was sitting on the other side of Dad. “I have to go to the restroom,” I managed to utter, and I got up and left the room. Behind the closed door I was able to pull myself back together, and returned to the table.
I sat down, looked over at H., smiled and said, “Hello, H.” And miracle of miracles, he spoke. Then he lifted his hand and waved to Dad. I wasn’t sure if Dad noticed, so I told Dad to wave at H., which he did. And H. waved back.
Just one small light in the midst of darkness.
A few minutes later A. arrived. She is a sweet little lady who does speak.
“My dad doesn’t speak,” I told the table at large, “but he likes to listen. He is very interested in fishing and in WWII.”
“I was in WWII,” A. said. “I was born in Holland.”
“Dad wasn’t in WWII, actually. He served in the Korean War in Baumholder, Germany,” I said.
“I was there!” A. piped up.
A. may or may not be a reliable source, I started to think. But I was happy to have someone at the table who was able to speak.
Then a whole beam of light walked into the room and up to the table. P.’s daughter, K., had arrived with bright spirits, stopping to say or word or smile at other residents along the way. She sat beside her mother and helped her drink her fluids. P. is on a liquid diet. K. explained that her mother has Alzheimer’s and has been at this particular facility for 3 months. She visits her nearly every day, but she doesn’t feel like she has to. In the nursing home P. was in the previous two years, K. felt like she had to be there daily. “This is a really good place,” K. said.
And my world got just a little bit brighter.
I’m sitting here at my computer desk at 5:00 am because my nerves have woken me up again and it feels impossible to lie in bed. Although my goal is to post three days a week, it’s been nearly a week since my last post. My email inbox has 147 messages in it — I like to keep it under 50. Many of the messages are unread links to my blogging friends’ posts. I am so far behind in reading the blogs I follow, the news from the online friends I’ve cultivated nearly two years now, that I know I will never be able to catch up and will have to resort to jumping ahead to try to get back in the sync of things.
I don’t like to complain about how busy I am, or how far behind I get. We’re all busy. But for those of you who notice I’ve not been around, I just wanted to tell you I hope to be back to reading and commenting soon.
I spent most of the day at my parents’ yesterday. Holidays are so hard for people who are suffering in some way. I woke up thinking that I needed to hang the strand of blinking red bell lights along Mom’s living room mantle. My sister Annie loved watching the red blinking lights, and because of that my mother loved them too. Or because Mom loved them, Annie did. We never were quite sure which way that actually went. We hung the bells up the first two Christmases after Annie was gone, but I think it was too much trouble for Mom to do last year.
Armed with blank Christmas cards and a package of peppermints, I left for my parents house mid-morning. Life has been so hard for Mom over the past months, years really, that she is worn out and doesn’t want to do one thing extra. I suspected if I asked her if she wanted me to get out her Christmas decorations she would say “No.” So I didn’t ask. I went for the bells.
I went down the hall and into Annie’s room where Mom keeps the Christmas decorations in the large closet.
While I was looking for the bells, I found a wreath. I took it out and hung it on the front door.
“I usually put the wreath my sister gave me on the front door,” Mom said from her chair near the far corner of the living room where she sat and ate her toast and drank her tea. “It’s on the glass porch.” I moved the wreath I’d hung to the back door and went out on the porch for the wreath my aunt had made.
I decided we needed Christmas music so I sorted through their collection of vinyl albums for the Christmas ones and selected one I remembered from my youth, the album cover completely torn through on one side.
“I don’t want to get the tree out today,” Mom said as I worked.
In one box I found a Santa and Mrs. Claus that a good friend of hers had made years ago. I set them together on top of the china cabinet.
Back and forth to Annie’s room I went bringing out decorations one or two at a time.
I put the snowman and woman on the window sill beside the card table, Dad’s “office,” where he sits and “works” or plays ball with a family member or a home health aide.
I found a centerpiece for Mom’s coffee table, four miniature nutcrackers for the kitchen window sill, and a snow globe that I think Dad might enjoy.
At the bottom of a big box, in a bag, I found the red bells that Annie loved.
I hung them along the mantle, securing them with tape. Then I cleared the nick nacks off the mantle and set out the manger scene that used to be my grandmother’s.
Christmas carols playing in the background, I stood still for a minute and looked around the room. Mom used to put a small tree on a table in front of the picture window in the living room, but Dad sits there now and the table is full of pencils, blocks of wood, books, cups of coins, and other things we use to try to entertain or occupy him.
“You know, you could put the little tree on that table beside you, Mom,” I said. “It wouldn’t have to be in front of the window.”
“I could put it on that table,” Mom said and pointed across the room to the end table beside the lift recliner that we got for Dad, but that he rarely sits in anymore. It is simply too hard to get him in it, and he slides out of position if he sits there too long.
I shifted the recliner away from the sofa and moved the small table between the two so that it would be closer to the electrical outlet. Then I got the little white tree from a box on the shelf in Annie’s closet, and I set it up on the table.
“I don’t want to do the ornaments today,” Mom said.
I went back into Annie’s old bedroom and found a crocheted tree skirt.
“My sister made that for me, too” Mom said.
I arranged the skirt around the bottom and plugged the tree in. It’s tiny colored lights added a warm glow to the room.
Annie’s blinking bells strung along the mantle lent a cheerful twinkle to the room.
I left the ornaments in the three small boxes on the bed in Annie’s room.
Mom can decorate the tree later.
Just a short note today. I’d like to invite you to read my guest post, How Memoir Writing Helped Me to Grieve My Loss, at Kathleen Pooler’s blog — Memoir Writer’s Journey. Kathleen is a writer and a retired family nurse practitioner. She is working on her own memoir about “the power of hope through my faith in God. Hope Matters” and believes “we are all enriched when we share our stories.” In the 2-1/2 years she’s been blogging, Kathleen posts writing and publishing tips that have helped her along the way.
I initially found Kathleen on Twitter and when I realized she was a nurse practitioner, I asked her if she’d like to read Dancing in Heaven. Nurses have been among my best supporters. She subsequently read and reviewed Dancing in Heaven on Amazon and Goodreads.
I’d like to thank Kathleen, for the lovely reviews of Dancing in Heaven and for inviting me to be her guest today.
I hope you are able to take a minute to read my thoughts about writing through the grief.
My mother is a study of perseverance and devotion. There’s no denying it.
For 51 years she woke up every morning; checked to see if Annie was awake; rolled her onto her back if she was; changed her diapers at first, then Attends as she grew older; got her up and into her wheelchair and pushed her into the kitchen for breakfast. With very little deviation, weekday, weekend, for 51 years.
Mom gave Annie her medicine; fed her breakfast; fed her lunch; put her back in bed for an afternoon rest; changed her Attends; got her back up; fed her dinner; then later put her back in bed; changed her Attends; changed her pajamas; rolled her onto her stomach and tucked her in, for 51 years. Every day without fail. Through it all Dad was there helping as he could, and he generally put Annie in bed at night, but in the earlier years he worked and wasn’t there a lot. After Dad retired and was home more he shared the responsibility for feeding Annie and most of her other care as well. But caring for Annie was an exercise in devotion and perseverance at which Mom excelled.
Now Mom wakes up every morning; checks to see if Dad is awake; helps him roll onto his back if he is; gets him up and into his wheelchair; pushes him into the bathroom to help him change his Attends; and pushes him into the kitchen for breakfast. With very little deviation, weekday and weekend.
Mom gives Dad his medicine; helps him eat his breakfast; puts him back in bed for an afternoon rest; gets him back up; makes another trip into the bathroom with him; prepares, helps him eat, and sometimes feeds him dinner; another bathroom trip; and then later, puts him back in bed. Every day without fail. Mom has home health aides helping her a few hours every morning and each evening, but Mom continues to take responsibility for Dad’s care. Caring for Dad is an exercise in devotion and perseverance at which Mom excels.
As Dad becomes increasingly less responsive, Mom responds by becoming increasingly more engaged. Like in her care of Annie, Mom rises to the occasion. Sometimes I feel as if I am trying to shout through tiny chinks in a brick wall to get through to my dad, to get his attention, to have him raise his head and look at me, to strike some tiny spark of interest in his eyes. Sometimes I think of giving up. Sometimes I wonder, what is the point. But not my mom. She shouts louder. Tries harder. Never gives in.
My mother is a study of perseverance and devotion.
There is simply no denying it.