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Posts Tagged ‘disabilities’

 

 

I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel. Maya Angelou

 

 

ONE, TWO, THREE, GO

 The other side of the bus door would become a faraway adventure to another state. Faraway, a vague notion that showed up only in Lucy’s story books. The little-kid kind. The ones she could read. She told her boss at the thrift shop where she had worked that she wanted to wait for the bus alone. She would be okay. The new place wanted her, and that made her happy. She could be the strong middle-aged woman her body said she was.

She felt the stare of a small boy who could be five, standing next to her. She knew what he saw. An awning-sized forehead, small green-pea-sized eyes, and a jaw as square and pocked as a sidewalk block. Didn’t matter. Bigger people stared, too. Maybe grown folk weren’t as blunt about it as kids. They were all rude.

Lucy’s mother had a troubled pregnancy and delayed birth. Lucy’s brain didn’t get sufficient oxygen. She understood why that made her learning slow, kind of. But she couldn’t see why she had to be ugly, too.

She turned toward the boy, slightly. He paused, then buried his head into the shoulder of the woman with him. She leaned toward the other side of the long bench, her eyes closed, and either sighed or moaned. Lucy couldn’t tell. She stayed focused on the door that would open soon, her exit from the impossible, thanks to the kind woman she worked for at the thrift store, who saw her frequent bruises and wouldn’t stop asking about them.

But Lucy didn’t have the money for rent and all the bills that came with living alone. She had to stay with her father. He apologized later. Said he missed Lucy’s mother, and couldn’t get over her death. That’s what set him off. How could a woman as good as his wife get cancer? But he wasn’t nice to her before she died, not that Lucy could remember. And apologies didn’t help when, in a drunken rage, he stepped on Lucy’s chest and broke a rib.

Lucy cried in the bathroom at work because each breath brought a nasty stab. That’s when her boss insisted that she tell the truth. Now. The police came in, and her father ended up in jail. Summer and winter mingled inside Lucy, next to the hurt, both relief and rejection. But her boss turned her confusion into spring. She had a friend who owned a sprawling three-hundred-acre farm. She offered Lucy a home and a job in her house. However, Lucy would have to move to Indiana, more than a hundred miles away. The friend would pay for the bus ticket. Lucy’s boss added a word new to Lucy: stipulation. Her father could not visit until he had been paroled for two years and sprouted wings and a halo.

 Lucy fidgeted with the handle on her suitcase. She hoped she had everything she needed: a few pairs of jeans, some T-shirts and sweatshirts, a worn coat wadded into a ball, a toothbrush, and toothpaste. A half-dozen storybooks.

She looked into the glass door of the parked bus but got lost in her own reflection and winced, frightened. Did her boss tell her friend how ugly she was?

The little boy got up from the bench and came closer to her this time. He tapped her on the elbow. “Scuse me,” he said. “You going to Shelbyville, too?”

Lucy nodded.

“My Uncle Red brought me and my mommy here, but he had to go to work. She can’t walk good. Can you help her get on the bus?” he said. “Please?”

A man disconnected the guard rope.“Be glad to,” Lucy said, noticing the woman for the first time, as she leaned into a worn suitcase and grabbed a cane. The woman breathed as if she were in pain.

“It’s a long ride to Indiana,” Lucy said as she took a few steps forward. “If you like, I have some storybooks with me. My favorites.” “Okay,” the boy said. “I got some, too. Let’s share.”Lucy linked an arm around the younger woman’s waist as she looked at Lucy as if she had wings and a halo instead of a broken face. A good omen.  

The line paused as tickets were checked.

Lucy whispered. “I have a small pillow with me. It’s new and clean. Your mama can use it. But can I ask if you or your mom have trouble with your eyes? Is your vision okay?”

“We see just fine,” the boy answered. “Why do you ask?” 

She laughed and turned to the boy’s mother. “Okay, ma’am, My name is Lucy. I’m glad to meet you. One, two, three, go.” For both of us.

 

 

 

 

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 Some of the most wonderful people are the ones who don’t fit into boxes. Tori Amos.

DEAR ELLA:
WHAT I WISH I COULD TELL YOU

My Dear Ella,
You lead our make-believe time
as we make a blue birthday cake for cow
and scoop chocolate ice cream for rabbit.
The birthday song needs only happy and birthday,
repeated with fervor, sung with heart.
I’ve often wondered if your tripled
twenty-first chromosome holds unique gifts,
including a sixth sense, compassion.
I recall a day before you learned to walk,
when you scooted freestyle along the floor.
A movie on television showed a violent scene,
reminiscent of an old crime,
different victim—me. I gasped.
You climbed into my lap
and blocked my view of terror.
Too young for words, your eyes said
what you could not. Don’t look at the screen.
Look at me.
Then, the past faded into
the beauty of your presence,
a reality lost to those who have not yet seen
more than a slant to your eyes and
delays in your motor skills.
Now, my attention returns to cow,
rabbit, snowman, and dog,
unequal in size, shape, and fabric,
equal in importance.
Today we pretend. The ordinary
opens to show the extraordinary,
above, below, and beyond
the surface of each moment.
My youngest granddaughter,
watching you be you
makes me a better person.

Love,
Grandma


In honor of World Down Syndrome Day
celebrated this past March 21

Third prize poetry contest winner Down & Beautiful 2017

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We don’t see things as they are; we see them as we are. (Anais Nin)

I am at the funeral of a man whose name I have heard for more years than I can count. Yet, I have never met G. He could have had brown, blue, or green eyes, been tall or short, had red hair or none.

Sure, I have created a picture of him in my mind. However, I have met people after hearing only their voices and my predictions have had a zero percent accuracy rate. Chances are, the image I’ve summoned keeps my prediction skills in the same nonexistent category.

I have come to support friends who knew G.

He had a mental illness, paranoid schizophrenia. Yet, he was not his diagnosis. When the people at his church came to know him, they recognized his unique sense of humor. The church members accepted G—as he was. He liked coming to services and being part of something important.

Smoking comforted his symptoms until that comfort turned on him and destroyed his body. One incredible day, with the prayer support of his friends, he gave up a three-packs-a-day habit within twenty-four hours. Too late, but nevertheless a miraculous change had occurred. He knew he had done something for himself.

As buoyed as I am by the beauty of the funeral service, I realize I missed something. I missed knowing G. The casket is closed. If I speak to the man inside, only his spirit may hear. I will not get a response, except in my thoughts and imagination.

I think about the anonymity of the casket. Those who mourn see inside with their memories. I need to listen even closer, and catch opportunities to recognize truth beyond the obvious, the judgments people make without even realizing they are making them.

Sure, a talkative lady with a quick smile is easy to approach. A child next to her who appears to have multiple disabilities may seem to disappear in the crowd—even though the child’s presence is like the ignored elephant-in-the-room. He is not his disabilities.

Sometimes I have no problem saying hello to people with obvious difficulties. Then, at other times I have felt every intelligent thought I have ever had drop away. Opportunities to make connections evaporate, especially when I feel anger in the air.

All of us are of infinite value. I pray to recognize that worth—even in the wrinkled face I see in the mirror. I can be hardest on me.

you are of infinite worth

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I am different, not less. (Temple Grandin)

 If I could I would shout Temple Grandin’s statement across the Internet, national news forecasts, and local gossip networks: “I am different, not less.” Autism did not prevent Grandin from earning a doctorate degree. Actually, when I grow up I hope to be just like my youngest granddaughter, Ella. She has Down syndrome.

Some people turn away when they see someone with a disability like Down syndrome, as if the tripled twenty-first chromosome were contagious, or as if communication with an individual with a rounded face and slightly slanted eyes were similar to interaction with an alien from another planet. Organizations such as the National Down Syndrome Society have helped alter that notion. Efforts to change attitudes toward folk with other disabilities continue. The Autism Society explains how a person with autism perceives reality.

I have to admit that I have learned more from Ella than she has learned from me!

Our little girl has charisma. Her mission begins with a smile that reaches into the heart, an acceptance that doesn’t judge. When Daddy and Cousin Kate stopped by the daycare center to take Ella on a trip to visit her great-grandmother, the other children formed a circle around her, keeping Ella captive. They were unwilling to relinquish their princess. Daddy needed to trick the children into a race so that he could grab his daughter and run.

Ella does not present herself as better—or less—than anyone else. True, her life has barely begun; she needs to double her age to reach double-digits, but I have never seen any signs of ego, impatience, or striking-out-in-uncontrolled-anger. Oh, she knows the word no and uses it often, but not as a weapon. She seeks independence the way any other child does.

Our granddaughter has had three surgeries, two that were serious; she is terrified of medical settings. However, after each visit she recovers into her smiling self with remarkable speed. She lives in each moment; now is the only time that offers usable power.

I study a photo of the toddler son of a friend. He, too, has Down syndrome. He has had multiple surgeries. Nevertheless, he grins at the camera as he waits for his breakfast. I think about how few adults would respond with such enthusiasm. Not only would they be repeating poor me as if it were a refrain in a popular song, they would be wondering why they had to wait to be served, considering all they need to endure. Most folk with a tripled chromosome don’t see themselves with the sun rotating around their needs.

I catch myself fussing with a bouncing cursor that reminds me of a drunk fly circling spilled honey; my irritation almost reaches uncontrolled cursing of another kind. This should not happen!

Yeah, well, I’ll figure it out, eventually. In the meantime, today is a day to celebrate, September 8, 2014. Ella is five-years-old. (Posting won’t happen today, however. I need a day or so to let the words settle before I edit them. I cannot claim perfection on any level. I don’t even feel free to be totally me no matter where I am; Ella is still giving me lessons in that area.)

I am sharing a photo of her birthday cake, not because it is beautiful, but because it is delicious inside and a tad ordinary on the outside. I have never taken a decorating class and probably won’t—I have a tendency to eat too much of the art form. The layer-fit alone disqualifies my creation from any cooking magazine, but I bake from scratch and the frosting contains fresh strawberry.

Happy Birthday, Ella! May we celebrate the differences that make any ordinary individual spectacular.

Ella's birthday cake, five years old

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