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Dancing in Heaven by Christine Grote: Inspiration Touches Home

Posted in book review, positive thinking, tagged , , , , , , , , , , , , , , , , on May 12, 2016| 2 Comments »

Be who you are. / Give what you have.  (Rose Ausländer )

 I watch my precious six-year-old Ella in Occupational therapy as she threads the letters to her name through a fluorescent green pipe cleaner. She recognizes the letters—she has been reading for more than a year. But she struggles through fine motor skills exercises because of her small hands and shortened fingers. typical for persons with Down syndrome.

At times she breaks away and puts on a show, her head between her knees, a look-at-me-I’m-cute expression on her face. I remain calm without reacting, showing no censure. Only what I hope is a you-can-do-it look. The OT is in charge. And she encourages Ella. With both experience and love.

And I realize how much I treasure my granddaughter because another image of someone with handicaps far more severe, appears in my mind. Her name is Diane Smith. I have never met her except through the written word, Dancing in Heaven, a sister’s memoir by Christine M. Grote.

The book is available through Amazon.

front cover

dancing-in-heaven cover

When Diane was born young Christine had difficulty saying her name. Diane became Annie. In the 1950’s diagnostic skills were primitive. And Annie and her family went through hell as the frightening news appeared. Annie was seriously brain-damaged. She would never walk, talk, live a normal life.

Through Christine’s sensitive, never-glossed-over memories about her sister’s life, Annie becomes real.  Beautiful. An angel spirit in a broken body. Yes, I suggest a box of tissues nearby. But I also recommend absorbing every word.

 Then, perhaps, the next time a man, woman, or child appears bound to a wheelchair at the mall or some other public place, that individual won’t seem either frightening or repulsive. The natural response will be an ability to look the person in the eye and see a unique spirit, perhaps someone with far more courage than many people could fathom.

the author, Christine M. Grote

OLYMPUS DIGITAL CAMERA

 

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Good People, Good Places, and Disappointing Spring Weather

Posted in positive thinking, tagged , , , , , , , , , , , , , , on April 10, 2016| 3 Comments »

It is good people who make good places.  (Anna Sewell)

I study this photo taken in a local park, and remember. Full bright blue sky. Sunglasses. Dark shadows with clear edges. And a day with my granddaughter, Ella.

Sure, light exists whether it is glaring or not, hidden behind gray clouds. However, cold wind, rain, as well as snow flurries steal the spring I expected this year.

Cold hasn’t taken away pleasant moments.

I had a delightful evening with my sister-in-law and brother-in-law last night as I served one more cold-weather meal—pork chops and sauerkraut.  

The antics of my grandchildren in my tiny office also bless my work space. The children leave a grand mess. But the chaos also brings suggestions for further stories as well as deep, sweet memories.

Last week at an exercise class I fumbled, as usual, through the transitions from one move to another. At least the continuous action healed the chill in my bones. Then I noticed a woman to my left in the row in front of me. She lifted one foot perhaps an inch off the ground, and then she raised the other, minutes later, while the rest of the class hopped to the right and then to the left. The lady smiled as if satisfied simply to be present. I wondered how old she was.

I guessed ninety. And discovered after class I was right when the instructor came to her and introduced herself.

“I’ll be back,” the older woman said.

And I hope she does return. She reminds me that internal warmth comes from far more than transient circumstances. Maybe someday I can learn that getting-all-the-external-parts-right isn’t the most satisfying life goal.

I look again at the picture of my shadow. I know it represents me. But I also know it reflects only a stretched-out shape created by an angle of light. One that can alter at any moment.

I pray to learn from young people like Ella. And older people like a surprise visitor in an exercise class.

Thank you, life, for today. In whatever shape it appears.

my shadow full sun West Fork park

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Imaginary Bears, Ella, and the Water Park in February

Posted in Down syndrome awareness, positive thinking, tagged , , , , , , , , , , , on February 20, 2016| Leave a Comment »

Children re-invent your world for you. (Susan Sarandon)

Ella and I play in the shallow end of the water park. We pretend to be in a world where blue, green, and red bears roam with white, brown, and black bears. With mock fear we run from all of them. Ella has told me blue bears eat grass and red bears eat cake, although it could be the other way around. She remembers. I don’t.

Her six-year-old imagination enlivens me.

But when another little girl enters the water with her grandmother I step out of the way and give the children a chance to meet. The other girl hugs toys to her small chest.

Ella notices. “Toys,” she says softly.

The other girl, obviously several years younger, sits in the water next to Ella. She hands her two of her treasures.

“Wow!” I say to the girl’s grandmother. “Unusual for such a young child to be so generous.”

“Well, she isn’t always like that.”

While the children play we grandmothers chat. I celebrate the moment and watch the kids’ stages of interaction, sometimes distant, sometimes close. Never expected.

The girl’s grandfather enters the water. The little girl goes to him and I carry Ella through the oval channel of the Lazy River. Ella points to the little girl and calls her, sister.

I feel blessed by my granddaughter’s simple love. Another woman in the channel comments on the beauty of Ella’s large blue eyes. They relay the honesty of her spirit. Down syndrome limits her body; it does not limit her being.

After Ella and I are dressed and ready to leave, the little girl’s family is in the lobby of the Y. The little girl wants Ella to come to her house. A precious, yet unrealistic request. Ella’s mommy will be picking her up in less than two hours.

I see again the gift of Ella when Mommy and Ella are seated on the floor in our living room. I wish I had a camera ready as our granddaughter leans into her. Ella lets her light shine. Our little girl reaches out to soothe and comfort Mommy, as if she knows she had a long work day.

My world gets complicated even if I don’t work an official eight-hour day. I plan more for one twenty-four-hour period than a planet-toting Atlas would. Then life comes along and adds more. I need to spend time with Ella, choose love first, and then realign my priorities.

No, Ella isn’t an angel. She is human and has her stubborn moments just like everyone else does. But, she doesn’t live in a funk, and she doesn’t hold grudges.

For her each moment is what it is, no more, no less. An incredible opportunity simply to be. I suspect that since I read too much into situations, I have more handicaps than she does.

Thanks for the fun day, Ella.

the world as it should be

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Blending Joy with Sorrow

Posted in inspiration, positive thinking, tagged , , , , , , , , , , , , , , , , , , , , , , on November 8, 2015| Leave a Comment »

I am incapable of conceiving infinity, and yet I do not accept finity. I want this adventure that is the context of my life to go on without end. (Simone de Beauvoir)

As autumn puts on the last of its show I remember the mini-vacation Jay and I took at Hocking Hills. I walked the trails and paid no attention to that silver band around my wrist with the tiny clock on it—I could have been wearing my watch upside down. It wouldn’t have mattered.

Perhaps that freedom gave me the illusion that utopia existed, at least somewhere; I felt healthy, young, my chi as vitalized as it had been when I said I-do in July of 1971, when I felt as if I would be age 25 forever, continuously renewed. In Hocking Hills nature and I seemed unified. Beauty appeared in every direction.

The real world has returned. Another YMCA friend faces chemo and then radiation. A fellow writer friend fights for her life in an out-of-state hospital. I discover that several people aren’t doing as well as I had hoped. My sister-in-law has been to hell and back again. Her attitude, however, glows. She encourages others. She lives the life-explanation Francis Weller explores in the October issue of Sun Magazine, The Geography of Sorrow. Pain and loss, joy and peace co-exist in order to create a complete existence.

In our American society we expect to begin and end with perfect emotional control. Weller analyzes our bias against public grief. I read the article so slowly it took me several days to absorb each word.

I think about this again as my two older grandchildren, my husband, and I watch Where Hope Grows. The girls have already seen the movie. Rebe and Kate are only eight and eleven years old. Yet, they get it. They suggested the movie. Not every reviewer agrees. The creators made the mistake of using the word, God. However, I recognize more showing than telling, more action than preaching.

Calvin Campbell has sought the answer to life through drink. His choices inevitably fail him and he goes to Produce, a young man with Down syndrome, for the secret to his happiness. An unexpected story unfolds.

My granddaughters know how tragedy looks and feels. Kate’s friend fell through a patch of ice when she was three-years-old; the friend is permanently disabled. I wrote about it in a poem I titled Chrysalis. It was originally published by Saad Ghosn in the annual anthology, “For a Better World 2012.” It will be reprinted in Piker Press on November 23. 

The girls also know how to love. When their young cousin Ella sees them she is ecstatic. She talks about them often. Ella, of course, like Produce in Where Hope Grows, knows the secret of happiness. She is satisfied to be herself. She accepts the moment, and lives it fully.

Perhaps full joy isn’t found in happily-ever-after dreams. It lives in the mundane, the muck, the malformed, and the miracles revealed through inside-out transformation. Into the whole.

strong people don't have easy pasts

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Halloween, Dressed in Kid-sized Generosity

Posted in Down syndrome awareness, positive thinking, tagged , , , , , , , , , , , , , , , , , , , on November 1, 2015| Leave a Comment »

The soul is healed by being with children. (Fyodor Doskoevsky)

Halloween. And I offer to stay at my son Steve’s house to wash dishes. But his girlfriend Cece says, “Let’s all go. I will wash the dishes when we get back. Then you relax and play with Ella.” Cece doesn’t want me to miss out on the fun.

And fun is only the beginning. “Candy. Look. More candy,” Ella exclaims after she has stopped at only a few houses. Her costume is inexpensive and hand-wash-only fragile, the kid-popular, Doc McStuffins. However, Ella’s sweet smile brings her extra treats at several stops.

At first she approaches each house with her bag behind her back. Then she eagerly opens it with an excited “trick-or-treat.” Her cautious move has become a run. The neighborhood knows how to celebrate. Groups gather outside with bonfires, cackling witches, lit pumpkins. Kids fill the streets. Two children are in wheel chairs. I pause to say Happy Halloween, but don’t linger for conversation. Tonight is the time for action.

“Look,” Ella says to passers-by. She opens her bag and displays her treasures with pride. No one chides her or mentions that she has special needs.

At one house an empty chair blocks the sidewalk, but the front door is open. Ella runs toward the golden-glow space inside the house. The empty chair signals my intuition. I decide to follow her. An elderly man answers.

“Oh dear,” he says. Apparently his wife, who should be holding down the fort, has left with the treats.

Instead of responding with disappointment or anger Ella reaches into her bag and pulls out a box of candy. The man doesn’t understand at first. Then he realizes that Ella is sharing from her bounty.

His wife arrives and gives Ella a few extra pieces. Our little girl grins. Wearing her gratitude on her face.

As Ella descends the stairs toward Daddy, Cece, and Grandpa I tell the couple that our granddaughter with Down syndrome has had two open heart surgeries. She is resilient. Her open heart touches anyone who will recognize her gift.

The man has tears in his eyes. He did not accept Ella’s candy. He did receive her touch of love. And all Ella needed to do was to be Ella.

And I am grateful to Cece, too. Sure, I would have been happy to stay back at Daddy’s house, wash dishes and hand out candy. Instead I have the privilege of watching beauty in action.

The plates and utensils wait until we came back. Ella does not fuss when Daddy does not allow her to have all of her bounty at once. She savors each bite. I hope to learn how to savor each moment, too.

learning from children morning coach

 

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One Little Girl, One Huge Heart

Posted in Down syndrome awareness, positive thinking, tagged , , , , , , , , , , , , , , , , , , on October 19, 2015| 3 Comments »

Any fool can be happy. It takes a man with real heart to make beauty out of the stuff that makes us weep.  Clive Barker

Ordinarily when Jay and I pick up Ella from school he drives and I sit in the back with our granddaughter. I monitor snacks, play games, or read books with her.

Today I am at the helm of my ’97 Toyota. Ella repeats, “Grandma’s car.” She wants to know where Grandpa is.

“He went to the doctor. He will be home later,” I tell her. But I can’t see her face in the rear-view mirror. My mindset is in sync with her older cousins. They think that a hypodermic needle is to be avoided at all costs. But since Grandpa is a grownup, he would be just fine. I assume Ella’s viewpoint to be similar.

“If Grandpa gets a shot we will give him a big hug!”

There is silence in the back seat, followed by, “Grandpa be okay. I be okay.” Ella’s sweet voice cuts through me as the chorus repeats.

“Yes, he will. Grandpa will be home soon.”

The drive from Ella’s school to our house is just over ten miles. I feel as if I am driving cross-country.

Text Grandpa as soon as you get in the door, Ter. Tell him to call so that Ella can hear his voice.

On the outside I would appear calm. The car remains on the road. I stay within the speed limit. Inside I chide myself for a stupid mistake. Ella has had two open-heart surgeries and one minor surgery on her wrist. The word doctor opens a Pandora’s Box. She does not want her grandfather to fall prey to its powers.

Fortunately Grandpa hears the beep on his phone. He is leaving the office. “Grandpa be okay” takes on a new tone as Ella hears his voice.

“Let’s hide,” she says, anticipating hide-and-seek when Grandpa returns. Our little girl has no sense of time. Jay will not be home for another twenty-five minutes. I hold her in my arms and look into her huge blue eyes, possible now since I am not behind the wheel of the car and she is not bound to her car seat.

Sure, I will play this mock-game with her. The hiding place she chooses is in plain sight. And so is our little girl’s incredible beauty. Her internal powers shine: the gifts to love unconditionally, to simply be without comparing herself to anyone, and to bounce back after every fall.

I suspect there are people who look at us as we go to a park or enter a restaurant and think, How sad! That little girl has Down syndrome. Or worse, they identify her as a tripled chromosome and call her a Down syndrome child, throw around an R-word or two, and dismiss her importance. I can’t change that notion on my own. But I can make a dent in that perception.

Organizations like the National Down Syndrome Society and our local group, The Down Syndrome Association of Greater Cincinnati, help to crush myths and show how valuable each individual is. Success for many more persons with Trisomy-21 is possible, even inevitable. Yes, the child born with the genius IQ someday may create formulas, ideas, new drugs, and inventions that change the world. But the child born with an extra chromosome has the knack for changing the heart. Now.

Ella may not be able to express Osho’s quote pictured below in words. However, she lives it. I am fortunate to be her student.

life is not logic Osho

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Dreamers Merchants, Diane Grover, and Dignity for All

Posted in positive thinking, tagged , , , , , , , , , , , , , , , , , , , , , , , , , on October 8, 2015| 1 Comment »

Successful people keep their eye on the goal. If they encounter obstacles, instead of focusing on the obstacle, they find a way around it by keeping their goal in mind. It is a mindset of courage which makes it easier to pursue success. (Dr. Anil Kumar Sinha)

Meet Diane Grover, mother of five, a beautiful person inside and out. Diane founded the International Down Syndrome Coalition. She also started the Grand Strand Down Syndrome Society. Now she has created Dreamers Merchants.

This is no ordinary business.

Most employers look at appearances when hiring, even if that bias is subconscious. Somewhere between 17% and 20% of people with disabilities are employed. Diane’s mission is to change that statistic. She does more than hire—she gives these individuals a living wage and recognizes their dignity. In Diane’s blog, Cheerful Persistence, September 2015, she celebrates the definition of dignity.

I applaud people who realize that dignity is innate. It is not the exclusive property of the genius, the wealthy, the gifted, the privileged… In fact, sometimes the educated individual teaches biased info. My friend, Bethany Brianne Hall, helped to clarify some of that misinformation with one of her college professors.

“Genetics and Statistics show that all people with Down syndrome will not attend college. It is nearly impossible for them,” he stated in the context of his lecture.

Bethany did not sit still and fume. She responded with statistics. After class. Bethany was fortunate. Her prof heard her out.

“Do you know who Angela Bachiller is?” she asked. Knowing the question was rhetorical, Bethany continued. “She was the world’s first person with Down syndrome to hold public office. She lives in Spain. Tim Harris owns his own restaurant. And Sujeet Desai, a musician, went to college. He earned a 4.3 average. These are only a few examples.” Bethany suggested that he update his statistics. Perhaps if she had appeared confrontational in front of the other students he may have been defensive. It is hard to say in hindsight.

Then she shared her experience on Facebook. I smiled the width of my face. Perhaps wider. The links in the previous paragraph lead to these persons’ stories. Desai mesmerizes an audience with his music. Tim dances his way to his restaurant. Angela Bachiller’s photo shows a woman either patronized or ignored in public settings. Wrong! She is a public leader and servant.

I smile again now. Diane Grove is destroying the myth that the handicapped are poor workers and less-than individuals.

Di’s youngest daughter, Mary Ellen, has Down syndrome. She calls herself ME. Me! The same pronoun we all use to refer to our inner selves. And that self is incredibly beautiful—no matter how many chromosomes it carries.

Seven of Diane’s Dreamers Merchants stores opened on October 5. There are now eight stores. Freshly ground coffee can be ordered online. A great gift.

“Maybe, just maybe,” Diane says, “the world is hearing us.”

dreamers coffee10072015_0000

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Kindergarten, Ella-Style

Posted in positive thinking, tagged , , , , , , , , , , , , , , on September 15, 2015| 2 Comments »

The voyage of discovery is not in seeking new landscapes but in having new eyes. (Marcel Proust) 

Ella is scarcely buckled into her car seat after kindergarten when she dumps out her backpack. “See,” she says opening a black binder. “My homework.”

“This is mine,” she adds showing me a page with squiggled lines of crayon. “I color.” Papers fly all over the back seat. I grab them. My juggling skills need practice. Jay is driving. I am sitting in the back seat with Ella—not to spoil my granddaughter, but to spoil me.

She turns to an earlier page. The paper clip sealing those completed pages flies off. I have no idea where the clip belongs, even if I could locate it on the dark floor. Chances are her mommy will know what to do. For now I gather the loose items into Ella’s backpack and ask our granddaughter to pretend to be the teacher. I will be the student.

She points to numbers one through ten and identifies them in a clear, I-know-this voice. If I ask her to repeat the lesson she will refuse. Either I catch it the first time or lose. Ella will not perform. She has been reading phonetically for over a year. On her own terms.

See-what-I-know is not in her repertoire.

Eventually, perhaps, she will learn how to play the going-to-real-life-school-game. For now I try to discover what she understands from what I can discern. Not from what I assume.

I kiss her on top of her white-blond head. “Want to go to the park?”

“Playground,” she answers.

I smile at an even-better-than-yes answer. She has chosen a synonym.

“You’ve got it!”

Our little girl may carry an extra chromosome, but she sure isn’t a syndrome. Yes, it may be easier to say Down syndrome child—but it isn’t accurate. She doesn’t fit into a category, a label. She has blue eyes, a winning personality, straight blond hair, the flexibility of a wet sponge, and Trisomy-21. She has the syndrome, but it is only one small part of who she is.

And I wouldn’t want her to be anyone but Ella. She reminds me of life’s priorities. They live in her spirit. Because of her I have the opportunity to become a better person. A little bit at a time.

We learn together, taking turns as teacher and student. Student and teacher…Graduation isn’t on the agenda. We both continue to grow.

at West Fork park September 14, 2015

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Little-People Art, Creating It and Living It

Posted in positive thinking, tagged , , , , , , , , , , , , , , , , , on September 2, 2015| 3 Comments »

When will you learn that there isn’t a word for everything? (Nicole Krauss)

Ella has had enough play for the evening. Daddy is playing in a softball tournament. His team won the first game and the second is in progress. She doesn’t even want my iPad, usually a sure thing. She eases into my lap as we sit in the concession area and asks for her friend Nona. I didn’t see the little girl during the first game.

Nona is years younger than Ella. But our granddaughter doesn’t limit her friendships to children her age. Nona has a sparkling personality. And she has inherited artistic skills. I suspect that she and Ella communicate on non-verbal levels, through action, color, play. Little people see more than adults realize.

artwork by Nona Adams-Jones

artwork by Nona Adams-Jones

Ella puts her head on my chest. I straddle the hard bench and I’m amazed at the length of time my senior body remains still without stiffening into one four-foot-eleven-inch cramp. Something innately beautiful in Ella softens me.

Simultaneous loud conversations merge into a rumble. Ella’s arms are covered with dirt from the playground area. Her hair could use a brush. At the table across from me someone spills a beer into peanut shells on the concrete-slab floor. The noise and distraction don’t stop my granddaughter from falling asleep. I can’t take off her glasses without waking her.

This frozen-grandma scene would not appear to be pleasant. Nevertheless, I choose to remember it—every detail. I have no desire to join the laughter surrounding me. I would rather savor holding this blonde little girl, recognizing the trust she has in me, basking in her unconditional love. Another kind of artistic moment.

Soon she will awaken, sleepily, and see Daddy. He is her world. She is excited to give him her coloring page from daycare. I will give up this moment soon enough. For now there is no need for words. I remain still. Privileged. The grandmother of a girl with Down syndrome and up gifts.

Art comes in all forms. Sometimes words fail when they try to capture gifts that develop and change as this moment eases into the next.

shirts from past celebrated Buddy Walks

My husband and I wear these often as we watch our Ella grow.

Buddy Walk shirts

 

 

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The Curse Under the Freckles—from the first dot

Posted in positive thinking, tagged , , , , , , , , , , , , , , , , , , , , , on August 22, 2015| 4 Comments »

“What makes the desert beautiful,” said the little prince, “is that somewhere it hides a well…” Antoine de Saint-Exupéry

As I study Philip R. Rogers’ powerful rendering of my main character in “The Curse Under the Freckles” I recall the bottomless well when the story began, and the empty buckets that came to the surface. “The Curse Under the Freckles” can also be found at Joseph Beth online.

When Chapter One appeared in my first draft the tale had a different title as well as an older audience. I wanted to take a third-grader’s vocabulary and write a book for seventh graders. Although my granddaughter with Down syndrome was already showing an interest in every word in her story books, she opened my eyes to the larger world of kids with special needs.

Older children with limited reading abilities do not want to pick up a story about bunnies and kitties. Yet, the adventures prepared for teens and preteens contain too many words, too many syllables.

As I put together scenes, however, I felt as if I were trying to build a believable fantasy with stale super-sweet mini-marshmallow bricks. The plot reflected it, as predictable as an alphabetical listing and twice as boring. No subplots, insufficient conflict.

Bottom line—I wasn’t ready to serve. Many people believe that writing for children is easy. It isn’t. The editor and publisher’s expectations are higher for the author of children’s material.

Stories need to be fresh and entertaining yet stay within the realms of a young person’s understanding as well as the limits of respectability.

I don’t remember when I knew that giving up on my original goal was no longer an option. But I do know that is when the story took off—with plenty of hurdles of course.

Chase Powers, my hero, lost a few years. He became eleven instead of fourteen. He developed a sense of humor. His foes grew mightier. Some of my critique partners began comments with, “I don’t get this at all. But then I don’t even like fantasy…”

Oh well! Oh, very deep, what-the-heck-is-down-that-imagination-of-yours well?

One of my magical characters says, “It takes no courage to climb a steep mountain when you have been lifted to the top.” Sometimes this writer needs to listen to her own creations.

In the future I hope to help kids who have difficulty reading by writing in a style that is super-easy to read. This book travels through a 560-660 Lexile measure, fifth to sixth-grade reading level.

Perhaps, if I work hard enough I can tell a story with small words that touch and capture the wise. I know it can be done. My grandchildren have shown me that route. Often.

I’m not there yet. In the meantime I plan to have a signing at our local YMCA, and give a portion of my earnings to their autism program. These young persons have a lot to give; the program helps them to find those gifts. I have no idea how much water I can bring to the desert. But those extra drops aren’t noticed in the ocean.

One drop, one word, one action at a time…

back cover the curse under the freckles

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