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Posts Tagged ‘National Down Syndrome Society’

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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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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