|The more I talk to mothers who have disabled children, the more I understand the immense challenges we’ve all had to deal with. It reminds me of what we all have in common, the loneliness we’ve experienced, and the common thread that links us as mothers of special ones. I wrote this post after I finished an email to a writing friend. She’s a mother of a teenaged son who lives in a residential facility. He lives there because his uncontrollable, violent outbursts were a threat to her and her family. I imagine she’s wracked with guilt, yet she did the right thing. My email commended her for her devotion to her family. I commented on the endless and selfless ways she’s helped her son throughout the years. I commended her bravery and courage. After I sent the email, I realized I could say the same things about myself. My thoughts skipped like a ping pong ball. I thought about the years Jessica has lived in the group home. I thought about the day I moved her there. I am grateful that Jessica, unlike my friend’s son, has never been violent. I’ve witnessed, firsthand, how that looks. Years ago, one of Jessica’ friends bent Jessica’s finger so hard, the teacher thought it might be broken. I took Jessica for x-rays. I remember when the girl’s mother told me her daughter threw a brick (where did she find a brick?) through the T.V! Let me be grateful for small miracles.|
Of course there’s also horror stories about group homes. Thankfully, Jessica hasn’t experienced any abuse, but it’s a parent’s worst nightmare. The mother who recommended Jessica’s group home previously had her son in a Chicago home until she discovered the truth and had to rescue him. The story went like this: something about horrible conditions, lack of medical care, etc. The boy was nonverbal, so he couldn’t call for help. I don’t think he even knows how to use a phone. I’ve always imagined how this made my friend feel. What about her guilt? I’ve considered asking her – “Do you feel guilty about what happened?” but she’s so pragmatic, I imagine this never crossed her mind. I admire this woman. She’s a bright, strong, sensible mother. I wonder if the same thing happened to me, what would I do? I’m pretty sure I’d still be blaming myself. When you have a special needs child, you never stop worrying. The angst, the pain, the fear, the worry, those emotions never completely disappear. I still worry about Jessica, although not as much as I used to. She appears to be thriving in her group home. True, there are times when she gets intimidated and refuses to explain what’s wrong. I used to call it her autistic moments, because she closes down like a shuttered storefront. These minor issues pale when I think of my friend’s son, the boy in the residential treatment center. Whenever Jessica has an issue with the staff, it’s usually because she’s stubborn. They might tell her to get dressed and she’s unwilling to cooperate. One time they called and told me they wanted her to brush her teeth and she refused. I’m grateful these were minor problems. Many times, I’ve felt sorry for myself. It’s pointless, I know, but I can’t help feeling it. What’s arisen out of these experiences is an incredible story. While I still don’t fully accept Jessica’s limitations, I know I have to. It’s obvious I have. I have a responsibility to help Jessica and I refuse to let go. Part of me demands I deal with it. The other part yells – “No I don’t want to!”
I remind myself something good came from my experiences as a mother of a special needs child. I wrote a book. I know I’m the queen of denial (everyone in my writing class says so) – but I try and use this to my advantage. One thing everyone says about my writing is how brutally honest I am. I question if I can show my readers the depths of what I felt. What I still feel to this day. Will people want to read my story? Is it unusual enough? Is it compelling? There’s a reason I was driven to write it; it hurt, I hurt.
I am a mother.
So I had this problem, right? A bewildering experience, in my opinion and now it’s over, rather barely over, I can talk about it. Or at least provide some details. It has to do with my female anatomy, which I won’t go into detail about. Suffice it to say, I had my bladder sewn back into place and a complete hysterectomy. Two weeks ago today. The diagnosis reminded me of the shock of Jessica’s diagnosis. Unexpected. Unplanned. And unwilling to accept the reality.
Luckily, it wasn’t cancer. Or at least the doctor hasn’t told me they found cancer and it’s already been two weeks since the surgery. Rationally, there’d be no reason for the extreme emotional reaction. BUT I wrote a great story and it is going to be published !! June issue of https://arielchart.blogspot.com
I got another rejection letter today, this one from Woodbine House, a publisher devoted to stories about special needs. Back in August, after learning they were accepting submissions, I sent a book proposal and several chapters. I expected to hear from them any day. What I didn’t expect was the editor actually wrote a letter explaining why she couldn’t use my story! This was a good sign. Most rejection letters never come with an explanation, but this editor took the time to write! At the top of the page, under the company letterhead, was the form letter:
Thank you for your submission. I regret that it does not suit our needs at the present…..blah, blah, blah -basically, ‘thanks but no thanks’, and then this hand written note:
“Your writing is very parent friendly, engaging and insightful but I’m afraid we would not be able to reach the market with your memoir. More and more, we are finding that it’s nearly imposssible to succeed financially with any sort of memoir, perhaps because so much autobiographical writing is available for free on the internet. We have an especially difficult time marketing books that deal in any way with the adult years, for whatever reason…..You might try self-publishing and then if you succeed in attracting readers, you could approach a larger, traditional publisher with a proven record of sales.”
I guess I could have been upset, but it made me happy that this editor wrote to me with advice. At least I had some feedback about my writing. I think I will give myself two years to query agents and then maybe I will consider self-publishing on Amazon.
#literaryagent #writing #publish #strugglingwriter
So I received another rejection email. What was wrong with my story written specifically for a magazine addressing disabilites? It was about Jessica’s sensory deprivation disorder! Come on now!
#writing #literaryagents #disabilities #sensoryintegrationtherapy #memoirwriting
So I went to the Florida Writers Association conference last weekend. I met lots of other writers, rubbed shoulders with publishers and agents and generally kept hearing people talk about books they published. Except almost everyone had paid a publisher to publish or had their book on Amazon. This wasn’t exactly what I expected… I thought I would meet representatives from HarperCollins, Penguin, Random House or Simon & Schuster, and at least meet agents that had connections with those companies. That wasn’t the case. But there were a couple of good presentations. One of the presenters talked about the reason you don’t give up and encouraged everyone to send out thousands of queries. There was a critique group with Cheri Roman. With ten other writers in my group, I received positive critiques on chapter 1 of my book. Oh, and the folks who did the workshop on query letters were helpful. I learned mine needed work but now that it’s tweaked, I might use it.
So am I ready now? Can I send my book out? Nope, I have more edits to do. I thought my story was done! I learned I have to search Query Tracker to send out thousands of queries! And most of the agents said memoir is an oversaturated market and they weren’t interested in hearing from me. Whoa, when I heard that, I was totally crestfallen! Nope, I didn’t expect that. I had to keep reminding myself I finished the book. I told myself that’s a big deal. I never planned to self-publish on Amazon. I wanted to go to this conference and find an agent or have someone interested in my pitch, but I came home a bit deflated. Yet, that inner urge to keep pushing ahead, to capture the right words to describe the world around me is still there, telling me not to quit. I want to tell the world about my journey with Jessica and my family. But who would want to read about my story? Would anyone besides my friends?
I started reading Educated, by Tara Westover. Her memoir is on the best-seller list. If the memoir market is saturated, how did she get her story published? Isn’t my story just as unique? After I received my latest rejection letter, I complained to people in my writing group. One of them, the one who everyone says is “the best writer in our group,” told me she has over 2000 rejections and 67 acceptances. It made me feel better in a strange way. I applaud her success. I want both of us to succeed though. I want validation that my words, my story has merit.
So I will keep submitting. Starting to grow a thicker skin already. If you are reading this, please hit “follow”!
#fwa #writer #disabilities #mother #twins #cheriroman #memoir #literaryagent
“I’ll be leaving you behind.”
The words I typed out were supposed to be the beginning of another post for my blog. I was thinking about Jessica and all the stories I wanted to tell. Maybe offer a peek into what it was like to welcome all the new babies born into our family, then watch as they grew, then outgrew Jessica. Watching them wave goodbye as they left her behind.
I stared at the screen after writing that statement, and realized Jessica wasn’t the one on my mind. It was my 95-year-old mother. Slowly inching her way to the end of her life, she is the one who will be leaving all of us behind. The weight of her story tugs, urging me to give words to her struggle. To tell everyone what it’s like to be trapped in a body that no longer does what it’s told or watch a mind, once sharp and alert, abandon you, leaving you confused and helpless.
There is something about the duality of this situation and the things she has in common with Jessica. Things which have always been my normal. Although my mom has never had much in common with Jessica, she does now. She probably wouldn’t like that I am putting her in the same category as her mentally disabled granddaughter. This would annoy her. If she could she would make the disapproving face that has always reminded me of the Wicked Witch of the West. But I’m just telling it as I see it.
These days, I have to manage all the aspects of her life, but I’m used to this. Since Jessica was born, this was the role I’ve had to assume. Jessica has always relied on me, so this wasn’t anything different. Just one more person to have to be responsible for.
I tell myself I am a good daughter. At least I am devoted. If she deserves more, I don’t have it to give. I wonder if maybe I should feel guilty. I do and I don’t. This is how our relationship was always defined. Distance.
So I watch, emotionally detached, wondering what it must be like for her as she struggles with Alzheimer’s. Residing in assisted living at the Palace, she doesn’t remember why she’s in so much pain. It doesn’t help to remind her she has a compression fracture in her spine. She sits in her wheelchair, oblivious to the fact she can no longer walk. She’s developed bedsores. The doctor orders drugs for the anxiety, and an array of other drugs that block the pain but make her lethargic. She barely eats and has lost so much weight, she’s down to 76 pounds. In July she was 89. When I asked the nursing director what to do, she just shook her head and said the staff is trying to get her to eat. I don’t think she’ll live to see her 96th birthday. Maybe she will, you never know.
Last week, the nursing director called to tell me about the Hospice decision. Was that what I needed to hear to be nudged into going to see her more often? I went twice this week. A few days ago, when I was there, a man sitting across from Mom had taken off his white T-shirt and was waving it over his head like a soldier signaling the white flag of surrender. Shirtless, he looked right at me and yelled, “Come over here and talk to me!”
Frightened by his outburst, I looked away. When he began yelling louder, I tried to ignore him. When Mom was more aware of her surroundings, she had plenty to say about the other residents. I can imagine what she would have said about this guy. Mom would have been embarrassed. But this time, she didn’t notice. The woman next to me quietly lamented, “Oye yoy yoy, oye yoy yoy,” repeating it like a mantra. It sounded Yiddish, a phrase that translates, “Whoa is me.” But she was speaking Spanish. Her plea seemed to represent what everyone else in the room probably felt. The whole scene was a sobering reminder that one day, I would take my place at the table, repeating oye yoy yoy until the very end. Fifteen minutes had gone by, and I stood to leave. The obligatory visit complete, I kissed my mother goodbye. I know she is slowly transitioning to the final exit. She keeps talking about people from her family who are no longer with us. The other day, it was my father, who died over 25 years ago. Yesterday, it was her brother, Jake. He’s been gone almost 30. She said he’d called her on the phone. Maybe the other side IS calling. I just hope that when she goes, she goes in peace. And one of those folks on the other side is there to greet her when she arrives.
#dying #writing #death #peaceful departure #caregivers #memoir
SMACKED IN THE FACE – is that how I felt thirty-one years ago, when we sat in the cold air-conditioned room, meeting with the specialists, listening as they gave us their “final ruling” on Jessica? Maybe. Yes. It’s an accurate description.
As I worked on writing my memoir, recalling what happened over the years, I realized the things I’ve never forgotten are the emotions I experienced. The struggle. The anguish. The love. As I wrote, I had to recreate and reimagine events but it wasn’t hard to remember how I felt. I guess that’s how I captured it. So now that I’ve finished the book, I’ve decided it should be published.
I’ve written a story millions of mothers can relate to, or at least mothers and parents of disabled children. I see a similarity between my story and the common theme of many of Jodi Picoult’s books -children with some type of disability, families struggling with problems. The determination to pursue getting it published is growing. But first, I have to get noticed. So today’s blog is focused on coming up with an “elevator pitch” for my book. I’m sure some of you are wondering what the heck is an “elevator pitch”? Until I started writing this memoir I’d never heard of it.
So last night, I asked my husband if he knew what it was and of course he said he did. If you know him, you know he knows EVERYTHING about EVERYTHING. (Or just about.) And I mean that in a loving way.
So he says, “when someone is doing an elevator pitch, they are trying to create interest in a project. So you want to do one for your book. A good elevator pitch is short and shouldn’t last longer than a short elevator ride of 20 to 30 seconds, – that’s why it’s called an elevator pitch.”
“Oh wow,” I said, “now I understand. So help me write one.”
I wanted to come up with a killer pitch. I’d love to get some feedback. Here’s what I have so far.
My memoir, Another Side of Normal, begins with a life-changing detour after I am told that Jessica, my four-year-old daughter is “retarded” and will never grow up to live a normal, independent life. Filled with anguish, I use denial to resist accepting this reality until eventually, I do. The story begins when Jessica is twenty-eight and moving into a group home.
Here is an excerpt from the book:
“This was not how I planned her life. It was supposed to be entirely different. Without a map to guide me, it’s been a difficult journey to navigate. In the back of my mind, I can still hear the doctor’s words. His voice remains embedded in my mind like a permanent recording. ‘Your daughter Jessica is profoundly retarded.’”
Perhaps the most captivating aspect of my story is the way I illustrate my daughter’s unique speech and curious mannerisms. My target audience would be adult women, mothers and parents of children with disabilities. At approximately 84,000 words, Another Side of Normal is reminiscent of Rachel Simon’s Riding the Bus With My Sister.
#disabilities #uniqueabilities #writing #memoir #elevatorpitch #agoodquery