A tribute to Vera

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.

Cindy Cunningham

Vera
Cindy’s grandparents and her Aunt Vera

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Another angel dances in heaven

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.

Wish List – Upgraded Wheelchair would make life easier for 13-year-old boy

Ian Hatfield from the Cincinnati Enquirer - December 6, 2011

Every year our local newspaper, the Cincinnati Enquirer, generates a wish list and prints a daily story about an individual who needs something to better their lives. The campaign is sponsored by the Enquirer and administered by United Way. Thirteen-year-old Ian Hatfield was featured on today’s wish list.

Like my sister Annie, Ian has cerebral palsy. Also like my sister Annie, according to John Johnston who wrote the story, Ian “can’t walk or talk, but his smile speaks volumes.” When Ian was 10 months old, he was diagnosed with schizencephaly, a rare brain disorder, and cerebral palsy. My parents were first alerted that there was something wrong with Annie when she was 9 months old. She was diagnosed with cerebral palsy at 14 months.

Ian’s mother is quoted as saying, “The way the doctors describe it, he’s trapped in a body he can’t use.” (Cincinnati Enquirer, Dec. 6, 2011)

Because of modern technology, unlike my sister, Ian is able to communicate with a device that “speaks his thoughts when he pushes buttons on a screen.” Also unlike Annie, he was likely trained from an early age to use a power wheelchair for mobility.

Ian has outgrown his power wheelchair, and his insurance is expected to only cover a portion of the cost. His parents have limited financial resources because of his mother’s time off work from serious medical issues and his father’s loss of a job due to the recession.

I have no way to know, but sometimes I wonder how different life might possibly have been for Annie had she been born in 1998 instead of 1958. When I see someone like Ian it warms my heart and makes me want to cheer out loud. Sometimes I criticize all the things we’ve lost in this age of technology. But when I see a 13-year-old boy who is able to go to school, and communicate because of the devices technology has provided, I am overwhelmed by the goodness of our society’s achievements.

Go Ian.

If you would like to help, print the coupon below and mail it with a donation to

Wish List
P.O. Box 6207
Cincinnati, OH 45206

(Click to enlarge).

When individuals read what you write

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Christine M Grote signing books at the Cincinnati Authors class, College of Mount St. Joseph, Nov. 5, 2011
Signing books at the Cincinnati Authors class November 5, 2011

While at the College of Mount St. Joseph earning my English degree several years ago, I worked as a writing consultant in the writing center. We assisted students in every stage of the writing process from idea generation to final editing. I heard more than one student complain about writing, I can tell you. My response was “It is an honor when someone wants to read what you wrote. They are interested in getting inside your mind. They want to know what you think.” I don’t always have this idea of respect and esteem in the forefront of my mind when I’m writing. But it is the simple truth.

I took a course while at the Mount called Exploring the Sacred. It was a wonderful combined English and religion course, taught by a team of two excellent professors: Elizabeth Bookser Barkley (Buffy), and Alan DeCourcy. One of the books we read was Martin Buber’s I and Thou where he discusses the nature of relations. In a bare-bones simplification of his idea he maintains that the expectations we impose on relationships reduce it to an “I-it”-ness. Whereas if we have unconditional love and acceptance we elevate the relationship to an “I-thou”-ness. Really listening, seeing another person fully and respecting that, elevates them from an it to a thou.

All you really have to do is think of how you view the employee at the cash register or the slow driver in front of you and compare that to your child, sister, or spouse. I could go into a lot of examples here, but that isn’t the focus of this post. The focus is to share how it feels as a writer to have individuals read what you write.

I’m experiencing this wonderful, scary, validating feeling over and over again with the launch of Dancing in Heaven.

On Saturday November 5th, I was the guest speaker at Jeff Hillard’s Cincinnati Authors class at the College of Mount St. Joseph. To be perfectly honest, I was anxious about this class from the time Jeff asked me to participate up until I was sitting at a desk Saturday morning and had begun to speak. I don’t have a lot of experience with public speaking and it makes me nervous. I also was concerned I would cry. It has always been difficult for me to talk about Annie, even before she died. Sometimes I would be having a discussion about her with someone and I would try to say something that struck a hidden nerve and I would tear up. I never saw it coming.

Fortunately, one of the students gave me a perfect segue. I had asked them to introduce themselves and tell me their majors. Since they all had recently read the book, most of them also volunteered what they thought about Dancing in Heaven. One woman said, “I am emotional. It made me cry at times.” I answered, “I cry easy too. In fact, I cry when I talk about it sometimes.” I reached in my purse, took out a little pack of tissues, and said, “Don’t worry about it if I do. I’ll recover.”

It was extremely validating for me to be there and hear their comments and questions. They got it. They really got it. And in some cases they saw things in the story that I missed myself. It’s amazing to me that I wrote this book from my own personal experience, and yet I continue to learn more about my own experience by the light that readers shine on it.

One of the first readers of my book was a high school classmate of mine who now works as a home health aide for a disabled young man. “I remember the first time I met Annie at your home on Gainsborough,” she said. “I remember being afraid.”

I don’t think it’s terribly unusual for people, especially young people, to be uncomfortable or even afraid when they see someone or something they don’t understand. My dad once told me when he was a child he was afraid of people in wheelchairs. But I had forgotten this aspect of my experience.

Many of the students in the Cincinnati Authors class had a relative, a neighbor, or knew someone who was like or similar to Annie. “My nephew has a rare disorder and was only expected to live eight years. He’s eleven now. What would you tell his parents?” one student asked. “I’m going to share this book with my neighbor’s mother. He’s a lot like Annie. He smiles whenever I go over and visit him. I don’t know if he knows me or not,” another student said.

I sent a copy of Dancing in Heaven to another high school friend who had been particularly helpful. He emailed me last night after finishing it to thank and compliment me. Here’s the miraculous part. He wrote, “Coincidentally, I loaned your book out to one of my staff today as she just received a diagnosis of cerebral palsy for her four-month-old baby who has been demonstrating seizures and other symptoms. . .I think she will find inspiration and strength from your memoir.”

I could go on and on. It’s uplifting for me to see the effect Dancing in Heaven, Annie and my parents really, have on readers.

But I want to end with this comment from a student in the Cincinnati Authors class because it had a big impact on me. A few students had gathered around me after class. One of them said, “Annie was lucky. Your family was perfect for her with your parents and their abilities to make the things she needed.” And then another man said, “Or, to look at it another way, Annie was perfect for your family.”

We needed her more than I ever fully realized. She was perfect for us.