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Posts Tagged ‘Down syndrome’

There is something beautiful about all scars of whatever nature. A scar means the hurt is over, the wound is closed and healed, done with. (Harry Crews, novelist and playwright)

Dictionary.com defines a whirling dervish as “a member of a Turkish order of dervishes, or Sufis, whose ritual consists in part of a highly stylized whirling dance.” However, mothers and grandmothers see another wild dance in their two and three-year-old kids on their way to world domination. Very few little folk walk from one place to another. They move with a swift, designed purpose—preferably toward something forbidden.

Yes, I know I’m not allowed in the bathroom alone. However . . . Ella doesn’t talk, but her eyes communicate well, so does the slam of the door. I open it as she signs washing her hands, which really means playing in the water. I tell her she may NOT close the door, and we will play in the water after she listens. Besides, even if I roll up her sleeves, they are going to get wet, soaked if possible. She must expect the warmth of her personality to dry them.

Ella grins. I notice that she really does need her hands washed. I guess the quick wipe after lunch wasn’t sufficient, but I win when it comes to prolonged play at the faucet. She doesn’t fuss as we leave the sink, without extended splashing. Our house may be small, but we have plenty of adventurous nooks for a young child to explore. I smile recalling the long road our little one has traveled.

She was born premature with Down syndrome at three pounds and three ounces. I recall her Giraffe bed. Giraffe is a brand name for a high-tech bed that keeps a critical-care newborn warm. It also makes procedures possible without moving a fragile, tiny body. Ella’s first nutrition was intravenous, by hyperalimentation until a defect known as duodenal atresia, could be corrected.

I was fortunate to be one of her primary caretakers while she was in the hospital. During that time I wrote and recorded a song for her. However, her premature system was unable to absorb simultaneous sounds. The song can still be accessed from the site I used before I began this blog: http://terrypetersen.webs.com/music.htm  (Scroll down to find the lyrics to Ella’s song. It was not possible to access the sound track temporarily. It works now. Don’t know why!)

Ella runs to the refrigerator and pulls off a magnetic letter C. “Kuh, kuh,” she says. Then she grabs an M. “Mmmmm.”

“Very good. And you are mmm good, too.”

Her shirt reveals her belly as she raises her arms for me to pick her up. I see the scar from the feeding tube from her first year. She doesn’t remember her infancy. She wants something mmm good from the refrigerator.

Years ago, if people would have told me I would be happy to be the grandmother of a child with Down syndrome, I would have asked them what color the sky was in their fantasy land.  Now, I know the gifts our little girl brings make wealth look trifling. When I wrote that she was “made of spunk and angel wings,” I had no idea how prophetic my own words would become.

(Ella in her Harley jacket. Note speed-blur)

Ella in Harley Jacket Dec. 2012

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Forever is composed of nows.  Emily Dickinson

Our granddaughter Ella may be in her pack-and-play for a nap, but that doesn’t mean she has any intention of succumbing to sleep. Fortunately she isn’t putting up an ugly protest. This time of day is relegated to rest and our little one knows it. She doesn’t cry without a good reason.

As I work at the computer Ella babbles. She could be talking to a stuffed animal, an imaginary friend, or her guardian angel. Our granddaughter’s language hasn’t developed enough for us to know. Down syndrome has delayed her speech, but has elevated her understanding of the now, a place to be embraced—even if Grandma could be hogging all the fun Curious George games and Sesame Street videos.

I hear a cackle, perhaps the punch line to some joke only she understands. I shake my head and swallow a laugh. Apparently her run through Lowe’s didn’t wear her out this morning. It took two adults to keep one three-year-old girl from rearranging a huge hardware store. While I picked out an area rug for the computer/toy room, Grandpa followed our blonde tornado through the store. Ella made friends along the way, too. She always does, with her magnet-blue eyes and innocent smile. Her beauty and personality reach beyond the limitations of Down syndrome. She makes people feel chosen by her love. It relays an angel’s touch.

Perhaps an angel is teaching her the tricks of the trade—right now. And I don’t know a thing about the lesson. I can’t see or hear her life teachers. I may not have been born with the competition gene, but that doesn’t mean I don’t compare myself to folk who achieve a lot more. I also grow restless when time steals moments I feel are rightfully mine.

No day belongs to me. It is a gift, just as Ella is a gift.

Eventually the noise and rustling stop and I hear two voices in the bedroom. Grandpa and Ella laugh. It is post-rest time. Let the blessings continue. After all, I have a lot to learn.

It's today Pooh shared by Jane Friedman

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The trees that are slow to grow bear the best fruit. (Jean-Baptiste Poquelin Molière, actor and playwright, 1622-1673)

Eight-year-old Kate calls the day before Thanksgiving to talk to Grandma. She wants to know what her cousin Ella has done today, especially anything funny. I’m getting ready for the big feast, so I don’t have all three of my grandchildren at the house on my usual Wednesday. Sure, it would be difficult to prepare with three active kids in the house, but I miss the precious presence of the other two children.

I tell Kate about how I found Ella’s shoes on Barney, the Dinosaur. It’s the kind of story she wants to hear. Later I learn this game was initiated by Grandpa, but it doesn’t matter. It makes Kate laugh.

Ella reaches for the phone. She’s been out of the loop too long. I put the conversation on speaker, and then let our youngest granddaughter communicate, in her own way. She kisses the receiver. Blessings fill the air.

After Ella reluctantly gives up the phone, Kate tells me about someone she knows who is pregnant. The baby may have Down syndrome. The parents are waiting for test results; they are frightened. I am amazed at my granddaughter’s adult understanding. She knows what a joy her cousin is—and yet, she recognizes the difficulties of caring for a child with special needs.

Ella tries to climb onto the television stand. “No!” I call to her. She stops before I get to her, and I am grateful, but I am also glad she is extending her horizons.

It’s been a long haul since our little one was born seven weeks early, facing two surgeries before she was three months old: one for duodenal atresia and the other for an A/V canal defect. The second meant open heart surgery.

When her heart was cut open, our hearts were, too. The entire family learned what was important and what wasn’t. We continue to grow with her, to share enthusiasm when Ella points to the first letter of her name and pronounces “E” clearly. No, we probably won’t have a Harvard graduate. But a positive attitude teacher? Definitely.

“See you tomorrow, Kate. I love you.”

“I love you, too, Grandma.”

I’m not sure much of anything else matters.

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And as we let our own light shine, we unconsciously give other people permission to do the same. (Nelson Mandela)

Kate somersaults across the living room—with a cast on her left hand. “Did you see that, Grandma?”

“I sure did.”

“I’m going to do it even better this time.”

I want to yell, No, we don’t need any more trips to the hospital! But, her movements are confined, and the other kids are in the toy/computer room right now, so she isn’t going to knock anyone over. (Whether toy or computer comes first depends upon whether kid or computer plays the dominant role.) Besides, I am the one who was on the phone when our granddaughter broke her finger diving into the couch. The cast was necessary because the break affects a growth plate. I heard her scream, and then went into shock for a day or two.

She rode through her ordeal like a soldier and flashes her red and blue cast as a badge of honor. In fact, there are no more spaces on it for Grandma to sign her name. A place to fit initials would be difficult to find.

Children’s bones bend and heal easier than a grownup’s bones do. It seems my eight-year-old girl’s spirit is mighty powerful, too. Kate is drawn to children with special needs. She doesn’t see them as different; she sees them as people, like herself, with challenges. Perhaps having a younger cousin with Down syndrome has given her that blessing; perhaps that gift is innate. I don’t know.

I watch Kate perform one more somersault. With a smile. With ease. And I know I’ve learned something important about resilience.

pic from MorningCoach.com

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Let’s stop “tolerating” or “accepting” difference, as if we’re so much better for not being different in the first place. Instead, let’s celebrate difference, because in this world it takes a lot of guts to be different. (Kate Bornstein)

Ted Kremer won a day as bat boy for the Cincinnati Reds. The story appeared as front page news on Sunday, September 16,  By many folks’ standards, Ted, also known as Teddy, is different. He was born with a tripled twenty-first chromosome: Down syndrome. The full article is worth the time.

 http://cin.ci/PGyzar by John Erardi

This story has been posted and re-posted more than any other on Facebook, and it makes me smile. In fact, I shared it, too. There are enough stories about fraud, murder, and messy politics to pollute the press.

During the game, Ted (Teddy) got excited a tad prematurely. This exchange was taken directly from the article:

We wait until we get three outs before we count this one as a win,” said Votto, gently.

Teddy took the hint and waited for the final out.

And what did Votto tell you then, Teddy?

“He said, ‘I love you, Ted. Thank you for everything.’

It’s an upbeat attitude like Ted’s that makes this world bearable.

I know. I have a three-year-old girl in my life with an extra chromosome that somehow blocks out negative thinking. Ella has sunshine-white hair, and I have often wondered if it isn’t part halo. Oh, she has her human side, too. She knows how to test limits, and loves to throw any object—ball or not. It is not wise to leave eyeglasses within her reach. However, she doesn’t seem to learn trouble-making as quickly as she does love.

Last Wednesday when we had all three of our grandchildren at our house, I was on the phone with Ella’s daddy when I heard some minor fuss between her two older cousins. They were fighting over who got to play with Ella. I doubt she enjoyed being an object in the fight, but I’m sure she realized she was wanted.  She knew she was loved, just as Ted understood it.

Folk like Ted and Ella, who have to work harder to walk, talk, and learn the alphabet take the straight path to the important. Ego doesn’t get in the way.

It makes me want to alter the description special needs, to simply special.

photo from Circle-21

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