I saw a commercial on television the other day showing the outside of a house at night with a light shining from an upstairs window and a feeble older voice saying, “Open a window so the soul can leave.” Then there was a voice-over about nurses and nursing care. At the end of the commercial you see a figure move to the window and gently close it. A different, younger and stronger voice says, “Not tonight.”
For at least another night, with the help of the nurse, life has won and death has been defeated.
It made me think of my sister Annie, and the evening not so very long ago when death won.
Did your soul leave while your little body remained, not seeing, not responding, not moving save for burdened breaths?
Or was your soul watching later with you and I, alone in the room, your visible pulse fluttering through your neck, slowing to one, two, three strong heartbeats, stopping? Was your soul there with me then?
Was your soul watching as we each said good-bye to your still body, leaving the room one by one, save for Mom who stayed with the nurse, gently bathing your body one last time? Did you hover about?
Did you sneak out the door when they came with the gurney? Or did you stay to watch, everyone huddled behind closed doors while they zipped your body into a bag?
Did you watch as they unzipped the bag for me to check details, reassuring Mom that you lied on your stomach with your legs slightly bent, your ankles crossed, your right leg over your left?
Was your soul looking for a way out? Were you waiting to leave?
Did you fly out the door when they rolled the gurney away, your body zipped up tight, David and J.D. accompanying it to the hearse like an honor guard? Did you fly away when the door opened, or did your soul stay to watch?
Did you stay and linger with us a while as we went through the motions in the days that followed of things needing to be done?
Was your soul waiting in your empty room when I returned to it, time and again, still feeling your presence there?
How long did your soul stay? Did it quietly slip away later, after we’d dropped our vigil?
It’s 7:15 a.m. and I am sitting at our kitchen table with the windows open listening to the concert of the birds. I need to get a birdsong reference so I can imagine who I’m hearing as they are singing. So many different sounds this morning. I just saw my first hummingbird of the year as I was letting Arthur out. It is a glorious morning although storms are predicted for later. I’m going to try to get outside early to work in the gardens before the heat and/or rain comes. Mark and I spent most of the day outside yesterday, taking advantage of the break in the weather. He was on his mission to eradicate, exterminate and otherwise eliminate honeysuckle again. I just putzed around planting Lilies of the Valley, Sweet Woodruff and one Jacob’s Ladder.
On to the topic at hand.
Somewhere in the back of my mind I always had this vague notion of being a writer. I imagined Mary Ann Evans (George Elliot) or Jane Austen sitting in their parlors with a fountain pen and pot of ink scribbling away. I suppose that is why I went back to college, when I was 25-30 years older than the average student, to get a degree in English with a Written Communications minor.
For an assignment in a Feature Writing class I had to write an opinion piece and send it to a newspaper. As luck would have it I read a published opinion a few days later that inflamed my senses to the point where I told my husband, “I’m going to write a letter,” as I had threatened so many times times in the past. He just ignored me. I wrote the letter and e-mailed it in. Then I started sweating, Oh no, I thought, what if they print it? What will my friends and family members think of this opinion of mine? Will I start getting hate mail from strangers? Total panic.
The paper printed the op-ed piece in their column called “Your Voice.” I got accolades from my gay friends and silence from anyone who might have disagreed. Life went on.
The paper printed a couple more op-eds that I wrote and fired off, (always immediately regretting it and hoping they wouldn’t publish them). As another assignment for the Feature Writing class I had to send a query letter out about a feature story I had written for the class. Much to my amazement, St. Anthony Messenger responded positively and published my story, “Sister Mary Beth Peters: A Heart for the Poor.” I later sent them a story I had written after interviewing my parents about my sister Annie which they also published. You can find links to both of these on my Things I’ve Written page. That’s largely the sum-total of my publishing experience.
For a creative writing class I took a few years before she died, I wrote a collage of vignettes about my sister Annie. My teacher loved it. She suggested I revise it, make it the best I could, and then try to get it published. I made a couple of revisions and then shoved it in a file.
Back to the point. I’m sitting here with a finished book I felt compelled to write to turn off, or at least lower the volume of, the memories thrashing about in my mind after my sister Annie died. I pulled out the short story I had written a few years before and integrated it into the memoir. The whole time I was working, in my mind, I was doing it for Annie. It would be the only lasting imprint she left on this earth. I would be her voice.
Right now the finished memoir sits on my desk, a story waiting to be told and no one to listen.
The more information I sought about getting published and getting an agent and the likelihood of that happening anytime soon, the more discouraged I became. So I started to listen to the people online who were promoting self-publishing and I signed up for the Writer’s Digest University workshop: Successful Self-Publishing.
For our second assignment we were to read chapter 1—Indie Authorship: An Introduction; chapter 10—Author Platform; and chapter 11—Promotion. As I read, I became more and more excited. I can do this, I thought. I can really do this. All those pesky questions about how do I publicize the memoir and even let people know about it are addressed in these chapters I just read. As I continued to read I became overwhelmed. There were so many ideas and suggestions. How would I ever do all of this?
The good thing about the workshop is that the moderating teacher helps us stay focused. He gives us worksheets to help us sort out in our own minds: What are our publishing goals—are we in it to make money or just to get readership? What are our personal skills—what are we able to do on our own and what will we need to hire out? Given our goals, what strategies should we be using to achieve them in terms of publishing, distribution and promotion? And all the while, the handy little paperback book we’re reading gives us suggestions and idea after idea of actual things we can do to make it all happen.
I’m encouraged. And I’m excited. And right now, I’m taking a first step and working on getting an author website up. Nora Roberts, move over.
I was born August 3 – 1915 in a log house in the country between Piqua Ohio and Covington Ohio back a lane off of the Rake straw road. The house that I was born in is still there. Our house was the first house on the lane and farther east was another house on the same lane. The people that lived in that house by the name of Franks.
The house we lived in had only 3 rooms down stairs and one room up stairs. The kitchen was big and we used it for not only a kitchen but a bed room where my mother & dad slept. There were four of us kids and we slept up stairs in the one room.
The kitchen was the only room that had a cook stove in. And in the winter the other rooms was shut off so that the kitchen could stay warm. We had a pump where we got our water and an out side toilet. I can remember the winters back then were a lot colder and a lot more snow then we have today. We also had a pretty big apple orchard so we always had plenty of apples in the fall when apples were ripe. (Anna Adams Lemmon)
At my mother’s urgings, my grandmother wrote the story of her life in 1996 when she was 80 years old. She wrote it by hand on lined notebook paper and requested that no grammatical edits or corrections be made.
I started to school when we lived there when I was 5 or 6 years old. The school house was and the building is still there on Route 36. A one room school house. It had eight grades not to many children. We would walk to school every day but it wasn’t very far from were we lived. It was heated with a big pot belly stove so they called it then. My mother would buy us one pair of shoes at the beginning of the school term and they had to last us all year. I remember mine wore out before school was out and I walked barefooted to school. One day I can remember it snowed and we walked home bare-footed in the snow. Our teacher in that school was Miss Strenrod. She was a good teacher, she was pretty stricked with the boys. . .
Each one of us kids had chores to do it wasn’t very easy living on the farm. We didn’t have much time to play. We had to pump water to the barn for the cows and horses to drink. We would take turns about pumping the water. There was a big tank down at the barn and the pump house was up at the house which was a pretty long ways. Of course we kids would get into some pretty big arguments about who pumped the most. But Dad always settled that in a a hurry. . .
In the summer when the rasberries and strawberries were ripe Florence my sister and I would pick berries for a neigbor who had a berrie patch and sold his berries. We would get a penny a qt. We would work almost all day for .25 and we thought we was rich. That was not an easy job, we had to wear old socks on are arms so we wouldn’t get all scratched up. And a big straw hat because the sun would be awful hot. (Anna Adams Lemmon)
I typed my grandmother’s hand-written story honoring her request not to edit. It is 20 double-spaced typed pages and largely portays details of her childhood and life on the farm with her family. It is one of my most-valued treasures.
My grandmother died in a nursing home at the age of 94 early in 2010. She no longer could see or hear very well. She suffered from dementia and often didn’t know who my mom was. She died less than a year after my sister Annie, and my parents were still reeling from the loss of their precious daughter.
As my Grandma slowly deteriorated with dementia my mom tried desperately to find things that Grandma could do to occupy her time, to be able to make and receive phone calls, to maintain some amount of independence and quality of life.
A couple of weeks after Annie died I took my parents to visit my grandma 40 minutes away. Grandma was eating lunch when we got there. Grandma seemed pleased to see us although it also was apparent she didn’t have a clue who we were. Mom kept trying to explain to her that she was her daughter Mary, and Grandma smiled but without recognition. She was just passing the time with three convivial people.
When she was finished eating we returned to her room, my mom pushing her wheelchair and Dad and I walking beside her. I tried to tell her who I was.
“Grandma,” I said, “do you know who I am? I’m Christine.”
She just looked at me blankly.
“I’m Annie’s sister. You remember Annie don’t you?”
That sparked a recognition for my grandma who had been told about Annie’s death, and to my surprise and distress she became not only fully aware of who I was but also quite angry.
“What kind of daughter are you?” she demanded, “Leaving your mother alone when she has just lost her daughter?”
“Mom is right here,” I told her. “She is right here with me.”
“I’m here, Mom” my mother said. “This is Mary.”
“You should be ashamed of yourself,” Grandma continued to me. “Your mother needs you.”
Mom was not getting through to Grandma. By the time we got back to Grandma’s room I was in tears, not because she had been yelling at me, but because of her fierce defense of my mother and her tragic loss. Mom was desperately trying to get Grandma to recognize her. My dad got involved because at times in the past Grandma recognized him and he was able to lead the way to her seeing my mom for who she was.
“Ann,” he said, “do you know who I am?”
Grandma calmed down and got kind of quiet. “I’m sorry about Annie,” she said.
My mom leaned in towards her and said, “This is Mary. Do you know who I am?”
My grandma reached her arms out to Mom and leaned forward out of her wheelchair. Mom grasped both of her hands in her own.
“I’m so sorry, Mary,” Grandma said as she started to cry. “How are you doing? Are you doing okay?”
Mom told her about Hospice and how we were all with Annie and that Annie was an angel now with Grandpa. “But I won’t get to see her anymore,” Grandma said through her tears.
I took my mom back to see my grandma two more times before she died in February. The first time I waited in the car with my dad. Grandma was sleeping and my mom did not stay long. The second time Grandma was in a coma. When we visited Grandma we knew it would be the last time we saw her. She was lying on her back on the bed. Her frail and tiny body was still. Her motionless hands resting on her stomach looked like older perfect replicas of Annie’s right hand. We stayed for a little over an hour.
About two hours after we got back home Mom answered the phone call telling her that Grandma had died.
The last years of my grandma’s life were difficult ones for her and for those who loved her. But today I want to celebrate the way I remember my grandma.
When we were young, she had a large corrugated box in her laundry area beside the kitchen that she would pull out when we visited. It contained the items she had collected for us to play with—a plastic horse, small plastic toy soldiers, an empty metal donut-shaped adhesive tape container, and tons and tons of empty thread spools.
Every year until she was 80 my grandma held a Christmas party on a Saturday in December where she gathered all her children, grand-children and even great-grandchildren for a meal of Kentucky Fried chicken, potato salad and home made cake to celebrate the birth of Jesus. She had presents for each and every one of us that she had bought throughout the entire year. She used to give us each an orange and a candy cane. Then we would play BINGO for prizes.
My grandma was a prolific crocheter. I am the lucky recipient of four of her afghans. She made us little crocheted dresses when we were small and another for my daughter. On Grandma’s 90th birthday my mom and her two siblings held a big celebration for her where we displayed many of the items she had made with her own hands.
I miss my grandma, and I suspect my mom misses her mother. But we’ll always have the memories, and an afghan or two.
The first assignment, A Self-Publisher is still a Publisher, emphasized the need to approach self-publishing as a business or project with a plan which includes the following elements—setting goals and milestones, determining a schedule and budget, writing the book, preparing the book for publication, producing the book, distributing the book, promoting the book, and tracking the book. This first assignment was to write a 750 to 1500-word description of my book project.
How do you say good-bye to a disabled sister who is dying?
I tiptoe back to Annie’s bedroom and peek in the door. She stirs and opens her eyes. I walk to her side, lean over the railing of her hospital bed, and gently press my forehead to hers. Annie’s eyes are a large soft brown blur through the tears filling my own. “I love you, Sweetheart,” I whisper. Annie smiles and makes soft vocal noises. “Yes. Yes,” I say. “I hear you. I know you love me too . . . ”
My sister Annie was born a year after me with severe brain damage. She couldn’t walk or talk. She required the care of an infant, which my parents provided for her for 51 years until she died August 16, 2009.
Dancing in Heaven—a sister’s memoir is an inspirational story about Annie’s life, death, and her significance in the lives of those who loved her. The finished manuscript is 53,000 words, 212 pages and contains family photographs.
The formatted book will measure 6 inches by 9 inches and be printed on white. The cover graphic is being designed by my son who is an industrial designer and aspiring illustrator. It will show an empty wheelchair, or a wheelchair holding only a small stuffed animal.
At this point, I plan to use the print-on-demand method of publishing as well as e-books.
I have all the bases covered on Tools of the Trade (computer software and photography proficiencies) through course work I recently took at a local college, volunteer web-editing work, and my photography hobby.
I have a Facebook page, a fledgling blog (Random Thoughts from Midlife) with a small following that I began in January, and a second blog I am developing about developmental disabilities. I am unemployed and available to travel and promote my book as needed. I may find avenues to promote the book through county boards of MRDD, Special Olympics, Hospice or end of life organizations, and Christian bookstores.
According to the website PubMed Health, mental retardation directly affects about 1 – 3 % of the population. Dancing in Heaven’s target audience is family members, friends, caregivers and just interested or concerned acquaintances of those individuals who have mental retardation. It will likely also appeal to individuals who are, or who care about others who are, disabled in some other way.
People were always curious about my sister Annie. Those who were brave or forward enough to ask wanted to know: What was wrong with her? How did it happen? Could she talk? Did she know who we were? Could she understand what we were saying?
In Dancing in Heaven, I answer these and other unspoken questions in my portrayal of Annie’s life and death, and what she meant to those of us who loved her.
As Annie approached the end of her life I had to examine my own faith and beliefs about, or hopes for, an afterlife. Because I share these hopes and concerns of what an afterlife means for a person as disabled as Annie, Dancing in Heaven’s target audience also includes individuals who are interested in faith and life after death and will appeal to those who purchase and read stories with a Christian or spiritual significance.
Dancing in Heaven is a window into my family’s world of living with a severely disabled family member. It is a story not only about loss, but also about pure love. It’s about compassion, empathy, commitment, devotion, hope, disappointment and acceptance. But more importantly, it is a testimony to the basic value of human life and how we learn from and love each other . . .
“Most people might wonder what anyone could say about a life like Annie’s. After all, Annie never spoke a word or took a step, so how significant could her life possibly have been? The fact is that Annie had an extremely meaningful life—a life full of giving and receiving love. Annie was like a beacon of light. She did not need words or actions to touch the hearts of everyone who knew her,” (From Annie’s Eulogy by her sister).
She filled our lives with smiles, and radiated light and love every day of her life.
My post on Thursday, Human Kindness, brought to mind all the kindness towards my developmentally disabled sister that we witnessed as family members. I want to share with you an excerpt from Dancing in Heaven—a sister’s memoir. I began this memoir shortly after Annie’s death in the fall of 2009 and finished it about a year later. I am in the process of editing it and hope to send out query letters soon.
My sister Annie, in her reclined wheelchair, was hard not to notice. Many times perfect strangers would come up to her and talk to her. Senator John Kerry was no exception. During the 2004 presidential campaign, democratic candidate Kerry happened to attend Mass at Holy Angels, my parents’ church. As they normally did, Mom and Dad had taken Annie with them to church. Because of Annie’s wheelchair, they arrived early to get a seat up front in the handicapped section. As a result, they were sitting right across the aisle from Kerry.
In the church, without the presence of cameras, Kerry stood up after Mass, walked over to Annie, leaned way down over her chair and said, “I just had to come over and say hello to you.” Of course, Annie couldn’t speak, so she gave no response—except for the large smile that she was so generous with.
Annie often brought out the best in people. We were used to people not only being curious about her, but also being kind and generous to her.
A good example is the time we went to Cedar Point amusement park in the late 60s or early 70s. Mom was pushing Annie in her wheelchair as we were walking through the game concourse when a man came out of his booth and approached us. He asked my mom when Annie’s birthday was. She told him May. He said, “Wait here just a minute,” ran back into his booth, and returned with a little ceramic angel for the month of May. He said, “I wanted to give her something since she can’t ride the rides.”
Another time she got a huge stuffed Snoopy dog somewhere.
Friends and family acquaintances sometimes stopped by my parents’ house with a small gift for Annie. Mom liked to talk about the people who came up to Annie and “acted like they’d known her for ten years.” An elderly man at church, after getting my parents’ approval, regularly stopped on his way back from communion as he walked past Annie every Sunday to lean over and kiss her on the forehead. Another man would also come over, lean down close to Annie’s face and talk to her. She always just looked up and smiled.
Annie was a magnet for random acts of kindness. As her family members, we were fortunate to have been witnesses.
I woke up this morning wondering what I should do about visiting my sister Annie’s grave. She’s buried in my parents’ hometown which is about 45 minutes north of their home. Years ago, when Mom and Dad were deciding where to buy grave sites, either in their current city or in their old hometown where their parents and most of their relatives are buried, my dad won out, and I’m not sure my mom ever forgave him. The grave location was a source of consternation as we made funeral plans for Annie, and it continues to be an issue.
I have driven my parents up to see Annie’s grave several times since she died in 2009. We went shortly after her death to clean up the funeral remnants. We returned to view the headstone, which we had to arrange to have moved once we realized it was installed in the wrong place over the three gravesites. One trip we planted daisies. And another we placed painted stones that family members had decorated for Annie on the tombstone. The last time we went was early December when we placed an artificial pointsetta arrangement on the stone and a little artificial christmas tree in the ground. The last two trips were extremely difficult with Dad. He is not getting around very well and gets extremely exhausted by this level of exertion.
So now it is spring, nearly four months since our last trip and Annie’s grave is still decorated for Christmas.
I’ve had two conversations with my mom about what to do. Do I go alone to take down Christmas and put up summer flowers? Does Mom want to come with me and leave Dad at home with the home health aide? Does she want to try to take Dad if the home health aide goes with us? It’s a difficult decision. He probably would want to go, but I don’t know if he is able. And it’s extremely stressful for my mom to take him anywhere anymore, even with help.
Alzheimer’s has taken so many things away from my dad. And now this too.
I looked out the window from the kitchen table where I was finishing up my breakfast. The sun was rising through the woods and beyond the neighbor’s house now visible through the leafless trees. A red-breasted robin scurried across the garden looking for a worm no doubt. And then there was a second. Four baby squirrels chased each other up and down the trees and across the branches of the playground that is our woods. A gray chickadee pecked at the seed scattered on the ground below the feeder in the garden. The little animals are celebrating spring.
The newspaper says it will be 70 today. I think I’ll join them.
“I’ve known I needed to write this story for a while now. I would tell my sister Annie’s story in her own words if I could. In fact there is nothing I would like better than to tell her story from her perspective. But I don’t know what she was thinking or how she felt—it wasn’t possible while she was alive and any remote hope that someday, somehow she might be able to communicate that to us has died with her.
“I know I need to write her story, but I am afraid I have waited too long and won’t be able to remember it clearly. I am afraid it is too soon and I will remember it too well.” October 5, 2009 – from Dancing in Heaven
My edited manuscript was waiting for me in the held mail the postman delivered the day after we got home. After nearly two weeks of traveling, I am ready to sit a while and work on it again. (If you missed my earlier post about my memoir, Writing through the hard place, you can read it here.)
I started writing this memoir about my disabled sister Annie on October 5, 2009, although I incorporated stories in it that I had previously written for a short story class and also an essay published in St. Anthony Messenger based on an interview I conducted with my parents.
I structured the memoir to have a strict chronology of the days leading up to Annie’s death in the first part of each chapter, followed by a vignette from my memory or an explanation of some aspect of life with Annie in the second part of each chapter. So the reading sort of hops from “present” time to recollection and back. I was struggling with writing about the last days of Annie’s illness and death. As the anniversary of her death approached last summer, I committed to writing each day the events that had occurred on that date the preceding year. With this difficult part out of the way, I finally finished the first draft in November, 2010, right when I got an e-mail announcing a Writer’s Digest Workshop on memoirs. I took it as a sign.
Through the workshop I met Carolyn Walker, the moderator, who I later hired as a consultant to edit the complete manuscript.
Meanwhile, I bought and have read the following books:
Author 101 — Bestselling secrets from top agents by Rick Frishman and Robyn Freedman Spizman
How to write a book proposal by Michael Larsen
Literary Agents— what they do, how they do it, and how to find and work with the right one for you by Michael Larsen
Get an Agent — A Writer’s Digest guide
Jeff Herman’s guide to book publishers, editors, & literary agents 2011
I also have a membership to Writer’s Market online.
I have also joined the Writer’s Digest Community on Publishing Advice from Writer’s Market and Self Publishing. The moderator of the self publishing group, Linton Robinson has provided me some very good and explicit directions on how to get started in the self-publishing world.
The publishing business is a complicated entangled maze. Do I get an agent? Try to represent myself with a small publishing house? Self-publish?
Here’s my plan as I know it today. I’m going to revise and polish my manuscript so it will be ready to go when agents start clamoring for it over my e-mail. I have a query letter drafted. I’m going to draft a book proposal. According to Larsen, most book proposals range from 30 to 50 pages and contain three parts: the introduction, the outline and sample chapter/s. The introduction consists of 13 parts, ten of which are optional, and include the book hook and information about length, and your bio among other things. For the outline, Larsen recommends about one line of text for about every page of text in the chapter. Once it’s drafted, revised and let’s not forget, polished, my shiny book proposal will sit on my desk beside my shiny manuscript waiting for all those agents to come calling.
Then I mass-e-mail my also-polished query letter to agents I have identified from Writer’s Market.
I have a bit of writing, polishing and e-mailing to do.
While I’m waiting for all those agents to get back to me, I’m going to take Linton Robinson’s advice and get accounts on Lulu.com, CreateSpace and Lightning Source and learn all about self-publishing. I’m going to format my manuscript as a pdf and get a book or two printed. (Quite fortunately for me I have a talented industrial designer and artist son who has provided me with a cover graphic and a talented graphic designer daughter who will design the cover and format the manuscript for me. I think I can probably get this done pretty cheap.)
Over the next weeks, maybe months, perhaps even years, you should be able to find me right here at my desk, typing away, (that is, if I’m not out in my garden should the weather ever decide to warm up.)
Last November I signed up for a workshop through Writer’s Digest Online University. I had just finished drafting my memoir about my sister Annie when I read the e-mail and on a whim signed up for the workshop.
My sister Annie was born a year after me with severe brain damage, although she wasn’t diagnosed until she was over a year old and my parents didn’t fully realize the extent of her problems until even after that. On August 16, 2009, Annie died. My memoir is about love, devotion, fear, sorrow, and hope in an afterlife where Annie might be Dancing in Heaven.
Anyway, I was well-satisfied with the workshop. The teacher, Carolyn Walker, who worked with the five or six participants did an excellent job of pointing out all the things you hope someone reading your manuscript will point out. The workshop didn’t allow for a complete review of my entire manuscript, so I hired Carolyn as a consultant to finish the job. I received her comments late last week.
She was very supportive and complimentary, but the comment I most focused on was the one I copied below.
“There are places where I push you to write more about your emotions. I know that’s hard for you,” Carolyn wrote and she sent me a copy of an essay, a series of interviews with memoirists, she had written called, “Writing Through the Hard Place.”
To say it was not easy to write my memories initially is a monumental understatement. And now Carolyn wanted more.
Annie couldn’t walk or talk or do much of anything, really. She required the care of an infant. But at one point in my memoir I wanted to convey the loss I felt when I was younger of having a sister I could do things with. So I included a dream where Annie is walking and talking and I am fixing her hair like my older sisters sometimes did for me. Carolyn thought the dream was confusing and should go. I didn’t want to let it go. It was important. But maybe the dream wasn’t expressing what I had not necessarily wanted, but needed it to.
And that’s when these words popped into my mind, down through my fingers to the keyboard and appeared on the screen,
I felt cheated. If I’m being completely honest I can’t deny the fact that I felt cheated out of a younger sister who would look up to me. I looked up to Kathy and Carol. I watched what they did and tried to emulate them in many ways from how to wear my hair, to what to shoes to buy, pants to wear or music to listen to.
I didn’t have a younger sister I could teach how to do things. I didn’t have a younger sister whose hair I could fix or make-up I could put on like my sisters did for me. I had a younger sister, but I couldn’t do any of those things with her.
I know it sounds small, and very self-serving, but the truth is sometimes I just felt like I had been cheated. I felt cheated for myself and I felt cheated for Annie. We both had been cheated. My mom and dad had been cheated. We all had been cheated out of knowing the person Annie might have been.
Sometimes I wondered if she would have been more quiet like me, or vivacious like Carol. Would she have been pragmatic like Kathy, or a hilarious story-teller like my brother Jerry? Would she have shared a love of reading with me or would she have been a gifted artist like Carol and Jerry? What things would we have talked about? My memories of my other siblings all contain conversation. I don’t have that for Annie. I have only my words to her and her smiling back.
No one ever talked about what we all lost. The closest anyone ever came was when I interviewed my parents and asked, “How do you think our lives would have been different as a family if Annie would not have been disabled?” And my dad said, “ Well, I’d have had one more bright daughter.”
He would have. That’s what we all were cheated out of.
I never heard my mom utter a word about what might have been. There was no useful point to considering it and Mom was far too practical to think about it. Or if she ever thought about it, she was too practical to speak of it. But once when I asked if she thought Annie knew she was different, or felt bad that she couldn’t do the things that we could do, Mom said, “Look how happy she is. This is the only life she’s ever known.” Another time Mom said, “In some ways, she’s the lucky one. She’s never known rejection, or failure, or reprimand. All she’s ever known is love.”
We loved Annie. She was very special to us. In many ways she was a very special gift to us. We didn’t want to deny her by wishing she were different. We didn’t talk about it.
Would we have magically transformed her into a fully functional human being? In a heartbeat. Not for us, but for her. We had all been cheated—and Annie, by far, had been the most cheated of all.
I’m writing this morning from Annie’s room in my parents’ house where I spent the night last night. Annie’s old room, I should say, as my mom has begun to refer to it. And it doesn’t really feel like Annie’s room so much with the hospital bed lowered, its rail tucked down to the side, without the wheelchair and manual lift, without Annie.
But there are still items in the room that remind me—a homemade envelope of red construction paper decorated with a border of lace and labeled in large print with black marker, “Annie’s Schedule,” hanging from a hook on the wall above the bed. The pictures of our now deceased grandparents holding us when we were small, I framed when Annie was sick and I feared she was dying, “Annie has these angels in heaven,” I had said to my mom.
A crucifix lies on a doily on the bedside table along with a small pink fairy and a stem of artificial sweetheart roses. That’s all new. And the four pink posters decorated with silk orchids, that Carol and I made, propped against the walls on the dresser and cedar chest, covered with photos of Annie smiling—they’re new too.
When I woke up this morning my eyes focused on the wall beside Annie’s bed and I noticed some light scratches. “That’s right!” I thought, “When Annie was young she used to scratch her headboard in the morning when she woke up. We’d hear it on the intercom and know she was awake.” A new memory reclaimed, even after the days, weeks and months of excavating my soul for memories to fill the pages of Annie’s memoir. I had forgotten that.
The dolls Mom hung from the crown molding on the wall opposite the bed so that Annie could see them still smile down from the height. The T.V. is gone, but the stereo is here, although I don’t see the stack of Barry Manilow, Elvis Presley, Neil Diamond, and Kenny Rogers cds.
Two small decorative angels hang from the curtains at the windows. They might have been there before.
The green ribbons I tied on Annie’s bed railing to secure a foam padding and protect Mom’s arm when she started feeding Annie in bed near the end are still tied in bows there, although the padding is gone.
Mom put a throw rug over the threadbare spot on the carpet, worn down from minutes accumulating to hours and hours adding up to days where my dad stood to lift Annie from her bed into her wheelchair, or my mom stood to change Annie’s diapers, or dress her, or bathe her. The carpet hides the spot, but I know it is still there.
I think the pink gym shoes with the Velcro fasteners that wait on the cedar chest are the hardest to take.
After more than 18 months since Annie died, mostly it’s gotten easier. But some days, not so much.