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Posts Tagged ‘Down Syndrome Association of Greater Cincinnati’

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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