Month: September 2018

Is everyone chasing normal?

I just read an interesting article on another blog I am following.
It’s, 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.


“Sophie’s Choice”

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 two difficult decisions.

Over the years, I have secretly compared myself to Sophie. Perhaps this is taking it to an extreme, to compare myself to 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.

Pilidelphia-Poconos 10-2012 (34)
from left to right: Sarah, Jessica, Alia, Lily, and Cathy

Is Jessica a Kid or a Teenager?

A few weeks ago, my granddaughter posed this question:

Is Jessica a kid or a teenager?

It isn’t the first time a child has been confused about Aunt Jessica. When Jessica was 10, her little cousin Johanna was born. By the time she was five, her abilities were already surpassing Jessica’s. Sadly, I knew this would happen. I didn’t expect it to unfold any differently. Everyone outgrows Jessica, a young woman who will always be a girl. A young woman who will never grow up. On the other hand, Jessica isn’t aware of this, or if she is,  she doesn’t understand that there are things she will never be a part of.
Johanna is now 25, and remarkably, it is Johanna who remains devoted to Jessica. Never once during all those years, did she ask me questions about Jessica or act like there was anything unusual about her. Jessica no longer refers to Johanna as her “baby,” but she will probably adore Johanna for the rest of her life.
So here we are, twenty-five years later and it’s my 4-year-old granddaughter asking the questions. Don’t get me wrong, there’s nothing wrong with asking. I am impressed that she even thought of it. I tried to explain but I’m not sure how much she understood. Mina has a sharp little mind. She seems to analyze everything and often attempts to manipulate situations and people. I often have to tell her it’s not okay to do this or that to Jessica. And as far as her question, I think she just wanted to know what category Jessica fell into, is she a child or an adult? After all, I think she knows Jessica is her mommy’s twin sister. Is there a category for people like Jessica? I’m still trying to figure out the answer to that. Thoughts?
Jessica is holding her nephew Ari while her niece Mina leans in.

What does it feel like to have Sensory Deprivation Disorder?

My last post was about taking my granddaughter to see the Disney Princesses, something Jessica insisted on staying away from. This made me start wondering what it must feel like to be Jessica. The reason she acts this way is she has sensory processing problems.  Children with autism often exhibit these symptoms but in my daughter’s case, she has cerebral palsy and as well as an intellectual disability. It makes her highly defensive against anything having to do with her five senses.
So Jessica isn’t only scared of people in costumes, she hates going on the rides at the Youth Fair (it’s the effects of gravity on her body), she hates loud, sudden sounds, she hates flying on an airplane (both take off and landing is a terrifying experience,) she used to hate (but now tolerates) the swings at the park, she hates getting her nails cut (she used to suddenly yank her hand away right in the middle of doing it), she hates opening her mouth to brush her teeth, and she hates when I floss her teeth. She hates going to the dentist, hates going over a bridge while riding in the car, I can’t think of anything else but I think I have painted a clear picture.
These days she isn’t as bad as she used to be. Maybe she’s outgrown some of it. 25 years ago I started taking her to Sensory Integration Therapy. Back then it was considered a form of occupational therapy. It was a fairly new technique. These days, most parents of disabled kids probably know what it is.
So maybe it helped her. I don’t know what she would have been like without it, but she went to therapy for years and SHE HATED EVERY SECOND OF IT. When I took her for her sessions,  I’d sit outside the door, listening to the therapist tell her she was going to put her in the tire swing. Jessica would howl like a trapped animal, just from being pushed in a swing!
The therapist explained it this way: “Pushing her back and forth will actually help her, and this action provides a small amount of controlled vestibular input.” In other words, her central nervous system was resistant to any shift in space, so this was one way to get her to tolerate it.
I never fully understood what the therapist was trying to explain, but it was hard to listen to Jessica scream and fight as she protested about the exercise. I remember I had to use a plastic surgical brush and every day I was supposed to brush Jessica’s arms, legs and back. It was supposed to decrease her sensory defensiveness. The brush stimulating the nerve endings of the skin. Half the time, I’d forget or Jessica fought with me so much, I’d give up.
So I can only explain what Sensory Deprivation looks like from the outside. The bottom line is, I don’t know what it feels like on the inside!
Check out this site for more information

My little lightbulb

I usually take Jessica to go and see my 95-year-old mother at her assisted living residence, but this past Sunday she started saying she didn’t want to.

“Come on, it will be fun,” I told her.

They were having a celebration for Grandparents Day with the Disney princesses. I was supposed to take both Jessica and my granddaughter, Mina, but Jessica was adamant. She carried on about it for so long, I  decided not to push. She  hates getting near characters dressed in costumes, even if it’s a princess.

When she was younger, she used to scream if they got near her. Now she just retreats. Last time a person in a costume came up to her, she ran into the bathroom and wouldn’t come out.

Jessica is terrified of Mickey, Donald, Goofy, Minnie, and all the rest of them.

So on Sunday, I left Jessica with her sister, Mina’s mom.
Once we got there, I don’t know who had more fun. Was it Mina or the people she interacted with? This would have been a totally different experience if Jessica had come. Mina lit up the place like a lightbulb, racing over and hugging Grandma Becky, calling out to everyone we passed. She rushed around trying to hug every princess she met.


Great Grandma Becky and Mina

Mina and Snow White


My “Alarm Clock” Daughter

It’s 6 am on Saturday morning. The phone is ringing. It’s the ring I set up for Jessica. For a second, I’m sorry I ever taught her how to use the phone. On the other hand, I’m so happy that she finally learned how. I grab it on the third ring before it wakes up Chip. He’s snoring beside me. “Hello?” I answer.
“MuhMee, I sorry.” She realizes I was asleep, but she wants to know when I am coming to pick her up at the Group home.  She can’t tell time, so she doesn’t know I won’t be there for seven more hours. “Bye.” The line goes dead. A minute later, the phone rings again. I forgot to put it on silent. She leaves me fifteen voicemails.

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