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Write Me

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The twins @ 2 years old

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

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I’ll Be Leaving You Behind

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“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

 

 

writing

It’s the same but different.

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Me and Jessica

Even though Jessica lives in the group home, she comes home on the weekends, usually for two nights, sometimes one. Last Saturday, after I picked her up at the group home, she got in the car and as usual, asked, “Can we go shopping?”

But something about the way she looked gave me a bad feeling. She looked tired and worn out. However, we had planned something for my birthday and she refused to take no for an answer.

“I fine,” she kept saying.  It was too much trouble to argue with her. Even when she wakes up at 2 in the morning and won’t go back to sleep, it’s impossible to reason with her. What does time mean to her anyway?  So the day went on – we went shopping, bought the needed ingredients,  mixed up the cake, baked it, frosted it.

At the end of the day, Jessica was dragging, so I helped her get into bed. That night was rough. She didn’t sleep well. Usually asleep by eight o’clock, she kept getting up, coughing and complaining about her ears. In the morning, she said she was fine. Again, no use in arguing with her. So we did more shopping. Jessica was excited about the birthday dinner, Mina just wanted to stick her fingers in the cake and taste the icing.

By 5 pm, I was ready for Jessica to go back to the group home. My thoughts were ‘let them deal with her’, but it was too early to take her back. We still needed to do dinner and candles. At dinner, she didn’t want to eat anything. She wouldn’t say what was wrong. When we finally lit the candles and sang happy birthday, she decided she DID want cake. A few minutes later, she started to gag.

Here we go again, I thought – she’s about to throw up all over the table. Springing into action, I shoved Jessica into the bathroom before she had a chance to begin vomiting in Sarah’s kitchen. I was proud that at least we got to the sink in time. Okay, the ideal place would have been the toilet, but it was close enough.

The crazy part is how happy I was that she threw up in the sink. After crying, throwing up, wailing, throwing up again, it finally stopped. No one saw her vomit, but I know they heard the wretching. I heard Mina ask, “Why’s Jessica throwing up?”

Jessica’s vomiting lasted a minute or two. Churned up food poured out of her mouth like rivers of brown lava. Again, I thought about how grateful I was- she didn’t have a chance to throw up all over Sarah’s kitchen table. Thank goodness poor Mina didn’t see anything. She didn’t have to witness the same things her mom and her aunt Alia used to witness, years ago, way back when this happened on a regular basis. Most of the time, it started when Jessica choked on food, unchewed green beans or even a piece of lettuce. The choking, followed by gagging, then vomit.

It was always so sudden, but the gagging noise was the signal to everyone – GET UP and  GO!

I can still hear the sound of the chairs clattering to the floor when she’d start heaving. Alia and Sarah ran from the table as though the house had caught on fire.  Paralyzed, Jessica wouldn’t budge and then the vomit would sprew all over the plates and surface of the table.  Poor Jessica – I’d be screaming at her to move, as the frightening feeling of choking and not being able to breathe made her more immobile. I never knew whether to try to force her up and could never get her to vomit into a bag. No, the mess would erupt everywhere, cascading down the front of her shirt, over the table and on the plates. I would hold her hair back as she alternately cried, choked, vomited and tried to swat my hand away. The clean-up was the worst part.

She rarely does it anymore. That is, until last weekend.

Mina is still asking about this episode. She wants to know why Jessica threw up.”She didn’t feel good,” I told her. She keeps asking anyway. So when Jessica threw up last weekend, it reminded me of all my past challenges. That one in particular.

And, of course, I wrote about it in my book.

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Smacked in the face?

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Yep, that’s him, – the guy who knows just about everything! We were in Yosemite on a hike to celebrate our 39th wedding anniversary!

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

Uncategorized, writing

A baby and a book

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Baby Ari and me

So here I am doing one of my favorite things in the world besides writing…. holding one of the grandkids! And in less than two weeks, I am headed to the Florida Writer Conference in Orlando. I am excited to be doing this. I have my friend Mimi to thank for convincing me to go. Mimi is a fellow writer who has written a memoir about recovering from a stroke when she was in her thirties. She’s brave and doesn’t let a silly thing like a wheelchair get in her way. She goes around and around and never quits, just like the Energizer Bunny. Yes, that’s what she’s like. So last year, she tried to convince me to go to this conference. We had nearly completed our memoirs. I didn’t go. After she told me she had an agent interested in her memoir, thought I should pursue it too. So this year, I decided I’m going. My decision was so last minute, it makes me laugh to think about it. I was in Mt. Rainier in Washington, with sporadic phone reception, and no cell service.  Mimi kept sending emails and once in a while it would come through.  Finally, when I landed in Miami, I saw every one of her emails -telling me the early bird special price was going up – urging me to hurry! At the 11th hour… maybe it was closer to the 12th = time was almost up. She had texted me over and over. “Are you going?” “yes”, I texted back. “well hurry up and register!” “I can’t get service on my network!”  Finally, there I was in the back of an Uber, and I had bars! I  registered for the conference on my phone. Now if you know anything about me, you know I’m not technologically savvy, but I did it! In the nick of time. Woo hoo!

I even texted another friend to see if she was interested in driving to Orlando and by some lucky break, by 12 am we were both registered for this conference. I am looking forward to finding an agent to represent me. I plan to take excerpts of my book. Do I take a query letter? I’m not sure what will happen, but the possibilities seem endless. Maybe Mimi will be lucky too.

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Broken Brain

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Alia (around age 11, Sarah and Jessica (age 8) (Jessica is wearing  the Little Mermaid shirt)

When the kids were little, we’d get questions about what was wrong with Jessica from Sarah and Alia’s friends. Maybe a lot of them didn’t have interactions with a mentally handicapped kid. At first glance, Jessica didn’t appear to have anything wrong with her. In fact,she was really cute. So were the other two. But whenever Jessica spoke, it was clear something was different.

So “what’s wrong with Jessica?” was a question my other two had to explain. It probably made them uneasy having to offer explanations and must have made them feel terribly uncomfortable. I would have felt that way. Maybe I should have taught them some snappy comeback, but I was also so unsure. The blind psychologist I was seeing told me they should answer “Jessica has a broken brain.” Easy explantation? It sounded that way. I have no idea how that may have sounded, but the blind doctor – whose name I won’t say  – gave this advice. She said I should treat Jessica the same way I treated the other two girls – have her participate in the same things -not to restrict her.

I didn’t do it that way. Not because I didn’t want to. It was because it wasn’t what Jessica wanted. Jessica didn’t ask to go with Sarah to her friend’s house or ask to join Brownies or go to Tae Kwon Do. If she wanted it, I would have taken her. I would have insisted on mainstreaming but she appeared to want to be with individuals who were just like her. I got in an argument with a professor at UM about mainstreaming. She had a disabled daughter and was a big proponent of mainstreaming. But each child is a special case, and wants different things – don’t they? I always honored that.

So it ‘s hard knowing if what I did or how I parented was the right way to do it. I wasn’t the one who grew up with a handicapped sister. And as for Sarah, Jessica was her twin. In my book, I have a chapter or two where I explore this and how it felt. We had to manage, we had to continue living our lives an doing the ususal stuff. But I am left a bit wistful, wishing it could’ve been easier for the other two.

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“You Shouldn’t Have To Struggle!”

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Jessica was really happy at this birthday party. Here she is dancing with one of her buds.

Rene, Jessica’s support coordinator was talking to me as I held the phone against my ear listening to his reassurances. I felt the tears welling up in my eyes. The crying was about to begin for the fifth time that day.

“I just want her to be okay and when I took her to my new dentist, she told me Jessica had three cavities and needs a deep cleaning. And she said I needed to take Jessica to a specialist! I thought I’d been taking care of her! I’d been taking her to my old dentist, and they never said anything like this. Then I find this out! ”

My first thought was I was the most awful mother in the world to have neglected her. I swallowed, choking back tears. Rene must have sensed I was about to cry, I was having a hard time talking.

“No, don’t worry, please Cathy. We’re here to help you. And remember if you ever have a problem, you can call us.”

Sniffing, I wiped my nose on the back of my hand. Jessica came into the living room and sat next to me.

“Don’t cry MuhMee, I okay. I fine. Don’t cry.”

Looking at her, with her crooked smile, I stared at the front tooth she chipped last year. My sweet thirty-five-year-old child was trying to reassure me. On the verge of another crying fit, she smiled again and said, “Don’t wuh wee.”

It made me laugh.

“Jessica, I’m just worried about taking care of you. ”

It turned out the specialist was someone all my friends had used for years! Years! Everyone in the special needs community knows who he is. Why hadn’t I ever asked anyone? This just gave me another reason to feel guilty and reminded me of the struggles I’ve had to deal with. I tried to tell myself it was okay, at least I found him. Actually, thank goodness I found him. When we got there, Jessica became really nervous. Then we met him. He kept telling Jessica, “you’re such a pretty girl.” He started talking to her, and they seemed to hit it off. Next thing you know, she was opening her mouth and letting him examine all of her teeth. It was like watching a movie and I was awestruck by what was happening. Pure magic.

In all the years I’ve taken her to the dentist, I’ve never once seen her willingly open her mouth. Before we go, I have to give her Xanax or Valium and even then she won’t open her mouth.  I think of Rene, telling me I  shouldn’t have to struggle and I’m grateful.

I expect I will post something about this amazing dentist when we go back. He was a miracle worker. He loved Jessica. I love him.

#supportcoordinator #medicaidwaiver #specialneedsdentist