I got another story published today so it’s time to celebrate. The story is entitled “The Last Threads of Denial” but there are many invisible threads that still entangle me. I dance around around issues, unable or unwilling to face the truth; I worry whether my story told the whole truth or if I left something out. I write about motherhood, about life, about striving to be a good parent and worry. Mothers tell me they relate to my stories and nod their heads in understanding.
Meanwhile, my manuscript is out there, sitting in a pile with thousands of other manuscripts. Twelve small presses will either be saying yes or no to publishing my book, My recently deceased brother would have been proud of this perseverance. It’s hard to believe he died before our mother. That’s something I will continue to explore in my writing. His enthusiasm and encouragement echo in the silence. I don’t know if he fully understood my experience raising a child with an intellectual disability. His children were high achievers with exceptional abilities. But he read my manuscript and seemed to ‘get’ why I needed to persist. I hear the Beatles song, “Ob-La-Di, Ob-La-Da- …” The next line: life goes on.
Yes, life goes on and changes constantly. My hope is we should all whirl around and dance like Jessica, a girl who celebrates everything. A girl who doesn’t stay down for long. Here’s a photo of her dancing at Tim Tebow’s Night to Shine.
Let me dance with the dangling threads of denial.
Prom time!
The dance party, sponsored by the Tim Tebow Foundation, is better known as the “Night to Shine,” a prom night for people with special needs.
Write City published my story today and I’m beyond thrilled because although it took me two tries, it was accepted. This is an excerpt from the first email I received:
“We appreciate you letting us take a look at this story for possible publication in The Write City Magazine. Usually we’ve got a straight up YES or a straight-up NO, but in the case of your story, it’s mixed. We’d be open to seeing a revised version that addresses some of the editors’ concerns as follows:
One editor was not clear about the reference to “moon-shaped face” and would like you to be more specific about the child’s disability
Another wanted a few more, deeper descriptions
Perhaps the differences between the husbands could either be introduced earlier on, delved into more, or downplayed altogether, because the introduction of the husband’s different reactions felt a bit tacked on to the ending
Something about the ending needs changed. It didn’t hit us with the punch that the rest of the story did. Perhaps you could develop it a bit more, reach some additional conclusions as to why this encounter was important compared to others the protagonist experienced and why it lingered so vividly.
Like I said, if you want to consider our feedback, and resubmit, we’d love to take another look…”
I love a challenge so I revised, edited it another five times and showed it to my oldest daughter, Alia, who also stands in as my editor. This is the first time I will be paid for something I wrote. I am so grateful! If you’d like to read the story, you can find the link under “Publications” in this website.
There’s an important lesson here. I refuse to give up as I learn to do new things. I imagine it’s like learning how to juggle. Hard!
Over a month ago, I flew home from a visit with my daughter, with tentative plans to meet her and her family in South Dakota this summer. We’d visit Mount Rushmore! I was imagining what it would be like when everything changed a few days after I got home.
A month has now passed since we started the self-isolation due to the pandemic. Although Chip says he likes staying home, and he likes being alone, I struggle with not seeing my friends, or going to my writing class, or seeing my grandchildren. For the first few weeks of Stay the F home, I experienced fear, anger, and depression. Any suggestions from well-meaning friends to write about our world pandemic crisis caused further annoyance and gave me a sense of helplessness. So I wrote other stuff instead.
I’m grateful that right before everything shut down, I celebrated my daughter’s fortieth birthday. It was also my granddaughter’s birthday. Year after year, ever since my oldest child moved up north, I haven’t missed a birthday celebration. I’m afraid that might change.
When I flew home at the beginning of March, Jessica wanted to see me. I’d been gone for a week, and she insisted I come get her. I brought her home for the weekend. That was before the world changed.
Each day, the cases of coronavirus grew more widespread. Schools closed, then the parks, then small businesses. Toilet paper was one of the first things to fly off the shelves. Chip and I ran to the grocery store and stocked up on everything we could think of, expecting we would shelter in place for a few weeks. We had to make a decision about whether to return Jessica to the group home or keep her with us. This created more issues that could’ve impacted her services. I couldn’t lose all I had worked to achieve.
Questions abounded. What would happen if either Chip or I got sick and had to be hospitalized for coronavirus? When I flew home on the plane, I sat near someone with a bad cough. No one wore a mask at that point, so I didn’t wear one, but what if that man infected me? What if I were infected but didn’t have symptoms? What would we do with Jessica if one of us had to go to the hospital? She WOULD be better off in the group home, but how long would she have to stay there?
Sarah yelled at me. “Mom, take her back, I don’t know what you were thinking.”
I thought of the weekend when Chip had his stroke when I frantically drove him to the hospital because he wouldn’t allow me to call 911. Jessica sat in the back seat, bewildered. Luckily, I called Sarah on the way to the hospital. She met us at the emergency room and retrieved Jessica as I flew through the entrance with Chip moaning in the wheelchair. I debated what to do with Jessica and pictured that scene over and over again. I pictured one of us rushing to the hospital, sick with this deadly virus. What if we infected Jessica? Who would take care of her?
I called the director of the group home. She told me no one would be allowed to come and visit. Jessica would have to stay there for the remainder of the outbreak. I reluctantly agreed. It was almost as hard as moving her there in the first place. How would she survive? How would she manage if she had to stay there for months?
Today marks one month since we’ve seen anyone up close. We’ve video chatted with friends and family. I asked the group home to install WhatsApp on Jessica’s phone and occasionally, she is able to successfully video chat. With the proverbial sigh of relief, I can relax, knowing Jessica is doing just fine. It gives me a sense of peace to know when I die, she will be okay.
My ninety-seven-year-old mother’s nursing home stopped allowing visitors and families. I saw my mom right before I flew up to Philadelphia, but she wasn’t exactly coherent. A week later, I received a call she had pneumonia. It looked bad. I told my brother he couldn’t fly down if we had a funeral. He was astounded by my suggestion, but I told him, it wouldn’t be safe. Then my mom recovered. If anyone can beat the odds, it’s her. We often laugh about how tough Mom is, how her maiden name, Brick, represents just how hard she is. She’ll probably outlive the pandemic.
But each one of these things has weighed heavily. I needed a distraction. I started drinking wine. Every night. Cooked. Ate cookies. Drank more wine. Every night. Ate more cookies. Every night. I turned my attention to writing. Not writing about coronavirus or the editor who dumped me. No, I focused my attention on my memoir. I contacted new editors. I studied my manuscript, found plot holes, wrote more revisions, joined more writing groups on Facebook, took a free class in revising my novel in a month. Thank you, Martha Alderson!
Today I finished the second round of revisions on my thirtieth chapter. Three chapters left. I already have a few beta readers lined up.
Over the years, I’ve had to deal with enough challenges to fill a lifetime, but I am not going to be a victim, I won’t allow fear or doubt to stop me. This coronavirus has given me a chance to listen to my inner muse. I will do PitMad and research agents. I’ve already started to explore what’s next. Some good has come from this experience.
A few months ago, Jessica said she wanted a job. Rene, her support coordinator, began the process for her. He contacted Vocational Rehab, and after a bunch of mishaps, we got the paperwork completed and started the process. Today, after numerous trips to Voc Rehab, I picked up Jessica at her group home and took her to a scheduled interview at Goodwill Industries. This was supposed to be the 1st of many visits before she could be placed in any sort of job. I decided I would help her since she wanted it. Husband didn’t think it would go very far. I said, “I’m alright with that. After all, I’m retired. I can take the time off to do it & if this is something she wants, I’ll help her. “ We went to the 2-hour interview. When we got there, the job placement specialist, V.S., appeared annoyed when Jessica wandered around and became distracted. She insisted if Jessica WERE placed in a job, she’d have to conform. V.S. had the nerve to tell me Jessica would be better suited to Goodwill’s “Work Activities Center,” a different department, separate from Goodwill and one which required a separate application process altogether. Really? I’m patient but not this patient. She’s a job coach? She pissed me off. I told her about the plan to have Jessica placed in “Phase 2” (which Rene said would be our ultimate goal) The plan- to work with a job coach at the WOW center. Lady dismissed this possibility and argued with me, so I didn’t pursue it. During the 2 hours “interview,” V.S. explained all applicants are required to submit to a drug test. “Goodwill applicants must submit to a drug test within 24 hours of receiving this order.” I asked,” What if I do it another time?” “ Answer? “You will start the process all over again.’ Seriously? We went straight to the lab instead of the WOW center. At the drug testing lab, we waited for 30 minutes to be seen. Jessica did not produce enough urine in the cup (probably because she didn’t know how to pee into the container and was unable to fill it with urine.) and I wasn’t allowed to assist her. We tried a second time. This time she drank tons of water, I gave her a soda,& we waited another 45 minutes before the technician allowed us to try again. Again, she was unable to fill the container. At this point, I was told to “come back and try tomorrow, ” I was so distraught, frustrated, and upset, I started to cry. On the way out, I turned on a clueless Jessica, I swear I could’ve screamed bloody murder, I couldn’t believe how thwarted I felt. The whole process appeared to be a waste of time Jessica’s reply? “Forget it. I don’t need no job.” It ended there in the parking lot, but I thought it shouldn’t be this hard to help a disabled person. I understand Jessica has enormous limitations but this was a terrible experience. The hardest part? It emphasized and stood as a reminder of everything Jessica cannot do or will never do, including peeing in a cup! The support coordinator asked me to tell him what happened – so I emailed him a rehash of the entire thing. At least I got someone’s attention. He called as soon as he read it.
Caution, this post is meant to be therapeutic for me. Yesterday and today are one of those days lots of us have, where you feel like whatever you do isn’t right. And since I am blogging about writing, I feel like nothing I’ve written is any good and I should just ‘give it up.
Again, I caution those of you who don’t like to read whiny posts, because I am about to launch into some major whining. I’m going to let loose, really let loose. So you might want to stop reading right here. Fair warning. Stop now!
Personally, I hate people who whine. I really do. Yet I have to dump this feeling off on some corner and leave it. This here’s my corner. Seems like a safe place to do it. I have to whine. I have to tell what it’s like when your editor can’t understand why you haven’t figured out how to stop using a passive voice, haven’t remembered what he said about the forbidden crutch words he told me a million times not to use (and I use anyway)… On top of that, last week, my local writing group trashed my writing and I seem to be going in circles as I attempt to make myself understood. Even Chip acts like the things I say don’t make much sense. I feel HOPELESS!
So I titled this post “Give it Up” like the 1980’s song of the same title. Lately, I’ve taken to listening to it when I need jazzing up. I heard it when I went to spin class while the instructor played her mix of music. I was ready to quit pedaling, ready to quit while mumbling, ‘this is stupid to work so hard at exercising,’ when the song came on. It was a hit in 1982, KC and the Sunshine Band made a video (check it out on youtube) – you’ll see the 80’s shoulder pads, the mini skirts, the pouffy hair, KC’s exposed chest, and his mullet and unbuttoned shirt…. but when that song came on, I felt like dancing to the beat and what do you know, I was pedaling away on that bike and kept going! Now I play the song whenever I need to get excited about something. But today my take on Give it Up is the complete opposite of the repeated lyrics “everybody wants you.” Instead, I lament that nobody wants me, nobody wants to read what I have to say and I should give it up because I don’t have what everybody wants!
Except! It’s a little protest from another part of my mind, saying wait a minute here, .. a little tiny voice inside that whispers “That magazine is publishing your story in April so someone thought your writing was okay. ” I guess I shouldn’t give up entirely. At least not yet. Maybe I’ll even read again to the writing group. I can’t believe I fall so far when I get upset about honest criticism. If I’m going to write, I better be able to take it.
This gets me started on another topic. I see myself like the mouse in “If you give a mouse a cookie….” a wonderful children’s book about how one thing leads to another. Maybe the next post will be about how this negative, hopeless feeling, this downward spiral was triggered by my 96-year-old mother! How in the world, given her struggle with dementia or Alzheimer’s – how is she still able to berate me? Another story entirely and it does have its funny elements.
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.
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.
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.
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.0
I just read an interesting article on another blog I am following.
It’s http://bloom-parentingkidswithdisabilities.blogspot.com, a children’s rehabilitation hospital in Canada. I started reading the posts on this blog, one after the other. It felt like I had landed in familiar territory. These were MY people.
But let me return to the article. The author was discussing how parents of disabled children view ‘normal’. She went on to explain the following:
“It got me thinking about how the word normal is really a code word for “value.” In our culture, normal is valued, and disability is not. ”
Reading this sentence was like an ah-ha moment for me. I suddenly understood what motivated me to write a 318-page memoir. The process of writing it began over 10 years ago, as I started to reflect and sort out issues I’d had to face. Jessica is now 35 years old, and I am just starting to understand how to flow with it.
After reading the article, all I could think was “Wow.” Ms. Kinross summed it up in one sentence, what my struggle was about. Maybe one day my book will be published so I can share my unique story with the rest of the world.0
Catherine (Cathy) Shields writes about parenting, disabilities, and self-discovery. She is a retired educator with an M.S. Ed in Exceptional Education. Her experience includes networking and dealing with children and families of persons with disabilities. Cathy and her husband reside in Miami, Florida, where they raised three grown daughters. They kayak, ride bikes, hike in the Everglades, and visit the two grandchildren who live nearby.
