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 hour “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 dont 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.
Ever hear that phrase, “Stay positive?” Wondering what exactly that phrase meant, I decided to look it up. Here’s the definition:
“Staying positive means accepting the fact that you’re in deep trouble and working towards a plausible solution rather than just sitting and crying over the fact that you’re in deep trouble.”
It all started this evening when I got another rejection letter from a literary journal for a short story (actually I submitted the first chapter of my book as a short story.) This strategy seemed like a good idea. It’s about the day Jessica moves into a group home and the emotional turmoil I experienced as I went through this experience. Within this same story, I have a flashback of when the doctors at the research center for child development said she was RETARDED. We all know the use of the ‘R-word’ is not only contemptuous, but it is archaic, politically incorrect, insulting and generally, a word that should be boycotted from our vocabulary. BUT in 1986, in a small conference room in Miami, as my husband and I sat in front of a couple of doctors, that’s exactly what was said. So a short story about this scene should be interesting or could be interesting if I was any good at writing. My decision to use that chapter as a short story was a genius idea, right? It had the human interest element and addressed the issues of inclusion. Perfect, right? Nope! I’ve already sent this story or versions of it to fifteen different contests and journals and so far, (drum roll please) – I’ve had a total of six rejections. I am probably going to have all fifteen rejected. So the bottom line is nope, I am NOT in deep trouble. I just have to stay positive.
#writer #author #reading #stories
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.
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.
from left to right: Sarah, Jessica, Alia, Lily, and Cathy
Sophie’s Choice, is the title of a 1979 novel by William Styron, about a Polish woman in a Nazi concentration camp who is forced to decide between which child will live and which one will be sent to the gas chambers. Meryl Streep starred in the film version of this story, and now the phrase – “Sophies Choice ” is considered a kind of shorthand for a choice between 2 difficult decisions.
Over the years, I have secretly compared myself to Sophie. Perhaps this is taking it to an extreme, to compare myself to the Meryl Streep (in her role of Sophie,) as I make decisions and choices about Jessica. And in no way am I comparing the depth of my pain to sending a child to his or her death. I’m not. Examining my feelings, I have to look at why I feel this way. It is the act of choosing that causes my pain. I think of Sophie and the unbearable choice she had to make, how deeply it tortures her until she finally ends her life.
This is what it feels like to me. Unbearable. Especially the guilt.
Take vacations for example. I can’t leave her behind, yet she hates the plane. She cries and howls on take-off or throws up when we land. When she isn’t in her routine, she becomes ill at ease. Unfamiliar surroundings are scary. In my imaginary world, we have gone everywhere as a family – on cruises, on car trips, flying to exotic places or just camping in the woods. Except, we haven’t.
In the last few years, my husband Chip has helped me. He suggested we take her on short car trips to Orlando and do a lot of stopping along the way. We took her with us on a family vacation to Disney World a few years ago, but she wasn’t interested in visiting the parks. So when everyone else was going on rides or visiting characters, I stayed with Jessica. It’s hard to relax when every minute I am worried about Jessica. And then I think, am I self -centered? Selfish? What kind of mother feels like this?
I don’t know if I will ever get over feeling that I am like Sophie. It’s painful having to push these thoughts out of the way, but they cling to me. I have to remind myself over and over again that I am a good mom. Yes, we’ve taken her on some family trips, it’s just that more and more often, I’ve decided not to.
We once went on a family car trip to North Carolina. I should consider myself lucky that Jessica’s cerebral palsy only affects her gait and her speech. Her walk is slightly awkward, she drags her feet and shuffles when she walks. She gets tired easily. But she can walk. We had to hold her hand and take turns practically pulling her up the mountain on our hikes. It was pretty stressful, and once again, I felt resentment building up inside. Why did she have to be this way? I thought of my good friend whose son has CP. He uses a wheelchair, and she said they use the handicapped accessible trails when they go on hikes with him. Maybe she doesn’t mind she can’t wander anywhere she wants. I tell myself I should be like her. But I’m not her. I hate that I can’t be.