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Posts Tagged ‘Down syndrome’

Old age ain’t no place for sissies. (Bette Davis)

My 94-year-old mother-in-law sleeps on a narrow couch. She looks as uncomfortable there as she does inside her fragile body. She smiles and seems emotionally touched by the gentle stories I tell her about her grandson and great-grandchildren. But, I suspect she would agree with Bette. I have enough tact, however, not to discuss the obvious.

While my mother-in-law rests I elevate and ice an amazingly painful foot. I injured it the first day we arrived. This isn’t the out-of-town weekend I had in mind.

At the same time I sit with my youngest granddaughter, Ella, on the back porch of my brother-and-sister-in-laws’ house. Ella watches Peppa Pig on my iPad as I watch my ten-year-old granddaughter learn the art of hooking a bass with a lure. Ella and I are at the top of several rolling hills so I can’t see Kate’s face, but I know she has wanted to do this for a long time.

The action on the porch is different, subtle. Several ruby-throated hummingbirds flit close by. Then other species of hummingbirds appear—long enough for me to see their color, nothing more. A striped lizard makes an appearance. The next heat wave hasn’t passed through yet. The shade brings amazing comfort.

I think about my mother-in-law sleeping inside. My limitation, even though this one seems temporary, reminds me to celebrate what I can do—not what stops me. Sure, I can’t trek through the woods right now, but someone needs to stay with our youngest granddaughter. A four-year-old could create a hazard among swinging hooks. And who would have volunteered to be a companion to our littlest one, even if she didn’t have a foot the color of bad sunburn? Uh, Grandma?

Ella points to the screen as Papa Pig dives into the water without making a splash. She grins. Perhaps she realizes the absurdity of diving anywhere without making an impact of some kind. Ella already knows life isn’t easy. She approaches Down syndrome with an up attitude.

I study the striated skin on my arms. The challenges of aging occur slowly. I have no idea how many losses it will ask of me. But I’m not living in tomorrow. Today a blonde beauty smiles at me with a love of life that’s contagious. She doesn’t count wrinkles; she looks straight into the heart.

I chose to spend time with Kate shortly after she was born because my mother-in-law had bonded with my children. She showed me how much that connection is worth. Nothing less than priceless. That lesson isn’t lost because my mother-in-law is now in the winter of her life.

Here’s to the older folk of the world. We’re all headed that way. Eventually.

enjoy little things words of wisdom

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Dare to be naïve. (Richard Buckminster Fuller )

Our youngest granddaughter, four-year-old Ella, sounds out words but doesn’t talk in many sentences yet. Down syndrome has affected her speech. She understands, but is limited in her ability to speak fluently.

I am giving Ella a bubble bath as she plays with water toys. The boat soon becomes a cooking pot where she makes soup.

“What kind is it?” I ask.

“Green.”

As she pours that pot out into the tub, she dips more suds into her boat-pot. “White soup.”

I suspect that she wants to add some dessert to the menu when she says, “pie.”

“What kind?”

She grins—with an energy that reaches across her face, pauses, and then mouths what sounds like flatulence.

That is not the answer I expect. Apparently her interaction with other children at school and daycare has extended her life appreciation in multiple directions. “Fart-sound pie,” I tell the towel rack.

“Fart,” she says, once, the R well-rounded and clear. She giggles. So do I. Fortunately the word does not become a mantra the way it does with most children when they discover minor vulgarity.

She merely laughs, her blue eyes flashing simple delight. After she is dried and dressed she runs holding the boat out in front of her, leading it from one room to the other. She has places to go and is eager to travel—wherever her path leads.

When her older cousins, Kate and Rebe, arrive several days later the first thing they want to know is when they can see Ella next. Since I don’t have a date yet I share the bathtub story. Ella’s sense of humor can be present anyway.

Kate and Rebe repeat the tale as if they are putting it into a mini-drama and need to memorize every detail. It will grow stale, in time, replaced by another incident. But I hope the three girls are always eager to see one another, to celebrate the freshness of who-they-are. May their naivety remain intact for many years. And may they continue sharing it with Grandma.

After all, Ella’s first full sentence was, “I love you.”

 

bath toys

 

 

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When you set sail for Ithaca,
wish for the road to be long,
full of adventures, full of knowledge. (C.P. Cavafy )

My husband, younger son, our youngest granddaughter, and I have set sail for St. Louis in a Toyota. We decide to stop to eat. Customers surround the building at our first choice. Sure, this could bring an adventure, but not the one we had in mind. Our little one doesn’t sit still long. Besides, my husband’s mother, Ella’s great grandmother, is waiting for us.

The next restaurant looks much better, especially since I have a gift certificate for this place in my purse. We get a table without a wait.

“Mom, look, isn’t she cute?” comes an animated voice from the table behind me. A teenaged girl with bright eyes and neatly styled dark hair sits with her mother. The girl points to Ella.

“Come on over and say hello,” I say.

The two girls have something in common: they both have Down syndrome.

The teenage girl’s mother and I talk. Before long I realize that we have been visited by a celebrity. The girl with the dark hair’s name is Karrie Brown, easily found on Google. She dreamed of becoming a model. And she did. She has 31,831 likes on her Facebook page as of this moment. (correction, 31,834: I am now one of them.) The following link is only one of many sites that follow her journey: http://www.glamour.com/fashion/blogs/dressed/2013/09/karrie-brown-is-17-has-down-sy.htmlhttp://www.glamour.com/fashion/blogs/dressed/2013/09/karrie-brown-is-17-has-down-sy.html

Karrie’s determination encourages me to keep going after my goal. Age does not need to stand in my way. Too old is a poor excuse. I will not use it. Besides, I have two novels ready to go, and I have had more short stories and poems published this year than I have ever managed previously. I am a late bloomer in the extreme. Okay, Grandma Moses was older.

Ella smiles through bites of chicken. She has possibilities, too. Her speech may be limited, but she loves words—and she sounds them out. She works to capture them. As we continue on our travels Ella goes over the same printed cards with a level of concentration that makes me smile all the way through. Moreover, our youngest granddaughter doesn’t complain about the trivial. She has larger visions in mind. Who knows what adventures she will discover? I’m with her all the way.

People with Down syndrome are as individual as everyone else. They may be likely to display certain characteristics, but these actions don’t describe every person with Trisomy 21.  I notice that my little girl doesn’t need to dominate or be superior in any way. She is who she is. We could all learn to have her level of acceptance. We could all learn from Karrie’s stamina and positive attitude.

I don’t think meeting her was an accident. Some higher power led us to the table behind her and her mother. Her sister just happened to be our server. What a blessing!

Keep up the good work. Karrie. This world can use your positive and beautiful example.

Photo from Karrie’s Facebook page: Karrie Brown Modeling the Future

Karrie Brown - Modeling the FutureLove can’t always be perfect, but it can certainly be sincere. Ask Karrie. It’s her way of life.

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The possibility for rich relationships exists all around youyou simply have to open your eyes, open your mouth and most importantly, open your heart. ( Cheryl Richardson)

If I had been given a crystal ball before I was married, I’m not sure I would have been grinning like a school girl as I took my vows. Oh, I’m not regretting that choice; I’m considering everything that happened just because life doesn’t play favorites. It rains both fortune and misfortune without deciding where either should land.

Not everything I saw as a treasure contained lasting gold and not every catastrophe was fatal. In fact the most difficult situations often brought me to a new level of understanding. Actually, I’m not too comfortable with the folk who are completely satisfied with themselves; I have nothing in common with them. They don’t have anything more to learn.

On July 3, 1971, in an elegant, impractical white gown I wore once, I didn’t foresee two sons and three granddaughters. If I had known one of those beautiful girls would have Down syndrome I would have been terrified. Of course at that time not much help was available for folk who had special needs. Moreover, Ella would require two surgeries before she could leave the hospital after birth, one for duodenal atresia and the other for an AV canal defect. Heart surgery is a relatively new medical advancement. Perhaps, the lack of a future view has been fortunate.

In those long-ago years my heart hadn’t been prepared for the spectacular gift I was going to receive either. My spirit wasn’t large enough yet. However, our youngest granddaughter enlarges it just a little bit more every time she grins and her eyes sparkle with honest love. Most people, and I’m included here, have an innate desire to succeed. In order to do that they compete for first place, for honors, for look-at-me in some form. They often don’t hear what someone else says because they are too busy planning what they are going to add. Most folk with Down syndrome are who-they-are. They don’t try to dominate. They are real. They give without strings attached.

When a pregnant woman learned she was carrying a boy who had Trisomy-21, better known as Down syndrome, some young people who live that life gave her an answer. Warning: the beauty in their responses can lead to leaky tear ducts.

http://www.upworthy.com/a-pregnant-woman-learns-her-baby-has-down-syndrome-people-who-have-it-answer-her-one-big-question-2

March 21 was World Down Syndrome Day. That date was chosen because Down syndrome is caused by the tripling of the twenty-first chromosome. Somehow, I suspect the people affected tripled their ability to grasp patience and joy, too. My Ella teaches the importance of simplicity, the glory of living in the moment, and the wonder of learning something new.

May the gift of the so-called handicapped become contagious. Peace to all!

they call in down syndrome but

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What a pity every child couldn’t learn to read under a willow tree… (Elizabeth George Speare)

“Book,” Ella says with enthusiasm.

She hasn’t been talking for longer than a few months. However, our four-year-old granddaughter reads.

When she first began vocalizing she chose the alphabet and tried to sound-out such letters as e-x-i-t in stores and libraries. But, most of her communication remained through sign language. Now she reads with me as I turn back to page one of “The Wheels on the Bus” for the five-thousand-four-hundred and sixty-third time. Well, I feel like the doors on the bus have opened and closed at least that many times “all day long.” Ella knows these last three words especially well and repeats them with a joy that is contagious. How can I mind the repetition when she is so excited?

When we get to the last page she turns to the vocabulary words, takes my finger and points to them. She wants to absorb each one, learn, grow—and I want to celebrate that expansion with her.

I decide to see how much more our little girl understands. Down syndrome has limited, but not stopped her. Among the books is a Dora the Explorer coloring book. I ask if she wants the crayons. She answers, “yes,” but then hands them to me. I decide to turn this situation around.

“What color should I use?” I ask.

She gives me green for the grass, and then points out places that I have missed, including hidden background. The walk, as she calls it, close enough for sidewalk, needs to be gray. She chooses red for the barn. Usually when I color with my grandchildren I shade the edges, layer color, blend yellows and oranges, play the artist. Not now. The focus is not on perfection, but on Ella as director. Not many four-year-old kids gets to legitimately play that role. In less than an hour we will need to tell her it is time to get her coat, get in the car, and go to physical therapy. For now she can be the guide for the next move, however simple it may be.

Early in the evening I see a video made by Ella’s maternal grandmother on her phone: Ella and her daddy are in a restaurant. He is printing words on a placemat: up, down, do, cat, and dog. Ella reads them all with a voice so sweet I could listen to her as many times as I have read “The Wheels on the Bus.”

She isn’t performing. She reads for the innate satisfaction of language. Competition from others hasn’t appeared yet. I consider my creative projects and question my motives. Do I approach them seeking success or to live this moment through them?

I love you, Ella, and I hope to become a better me because of you.

flower blooming in adversity

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Success consists of going from failure to failure without loss of enthusiasm. (Winston Churchill)

The electricity goes out late Thursday morning seconds after I hear a loud blast—probably a transformer on an adjoining street. My husband has left the house to pick up Ella from preschool. My job is to have lunch ready. Our kitchen is small, with one window and low light. Fortunately I have a gas stove, and can turn-on the burners with a match. An open back door provides enough sun to let me know when my homemade soup is warm enough and the sandwiches are toasted, not transformed into charcoal. A chilly breeze slips through occasionally, but natural sun beats a candle flame.

Our little Ella adapts. After lunch she opens her school bag and pulls out her glasses. “Book,” she says. She doesn’t complain about inconvenience. Down syndrome has delayed her ability to communicate verbally. Nevertheless, she gets her point across, with a gentle, loving style.

She is way ahead when it comes to self-acceptance. She doesn’t battle pride on the level many people do. She doesn’t need to be the most accomplished kid in her class—among the most loving will do. People can live to be in their eighties without reaching her ability to accept, to give, to be without pretense.

As my husband reads to her I remember another child I saw last night at a memorial service for my father at his church.

Across the aisle was a family with a young boy who had some serious handicap or illness. I did not know him or anyone in his family. However, I noticed the way his mother held his hand and stroked his hair, how his father and siblings paid attention to him with simple, yet significant gestures. I watched as the mother nodded to the boy, unstrapped him from his stroller, and then lifted his limp body onto her lap. She carefully attended to his breathing tube. Then, smiling, she caressed him as if he were a newborn.

That family understood love.

The priest spoke of loss, its meaning. He also talked about life. I had no idea what hope the family held for this child, but they were living the present to the fullest.

Our little Ella has had pulmonary hypertension. We were told that she could, possibly, outgrow it. When she was small she was on oxygen 24/7; as she grew older she needed it only at night. Last week her numbers indicated that she no longer required oxygen. Our family celebrated as if a war had ended. My celebration changed, deepened perhaps, as I watched that family.

I still cherished our granddaughter’s healing, but I wondered about the strength of that family’s gifts. All I saw was a single moment in time, like the cover of a book that held thousands of pages filled with stories, some tragic, some beautiful. In my own tiny church community we can speak to one another, no one left out except by choice. In this large congregation that wasn’t possible. The ceremony was formal, and these folk left before we did anyway. Actually, I didn’t know what I could have said. My thoughts didn’t have words, only a vague sense of awe that would have been cheapened if I tried to translate them.

All I know now is that there is a book next to me that I can open at any time, or a pad of paper where I can write. However, on my other side is a little girl named Ella giggling over a computer game. And I don’t want to miss one second of it.

you are of infinite worth

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A well-developed sense of humor is the pole that adds balance to your steps as you walk the tightrope of life. (William Arthur Ward)

My raincoat may repel the drizzle, but cold penetrates the coat’s surface anyway. Maybe I’d better get the gloves out soon. However, as soon as the revolving door of Mercy Hospital spins open, a blast of warmth runs through me. That sudden change reminds me that today is my second son’s birthday. Steve is the practical talent son. He holds a belt in Six Sigma; he’s the thinking-out-of-the-box problem solver of the family. Steve has a lemonade-out-of-lemons attitude. The party starts when he arrives. “Nobody is sillier than Uncle Steve,” one of his young nephews claims.

When Steve was a kid he would sneak a pony between cereal and eggs on my grocery list. He would walk with his arm around my shoulders at the mall without fear that one of his friends would see him being attentive to his mother. Sure, kids learn from their parents, but it works the other way around, too.

Last week we needed an old smoke alarm and carbon monoxide detector replaced. Steve had little time to do it. However, he managed to replace our detector and get his daughter, Ella, home to bed at a reasonable time, too. He didn’t complain.

Steve plays an active role in Ella’s development even though he works sixty hours a week. While Ella has Down syndrome, there is nothing down about her smile—or her daddy’s.

Yes, Ella’s Daddy will get the standard birthday gift, but sometimes words need to be spoken—or written. There are other folk like my Steve, people who give just because it is the right thing to do, because it is who they are. Blessings to all of them as well; to all of you, peace.

live like someone left the gate open

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In this world, you must be a bit too kind to be kind enough.
(Pierre Carlet de Chamblain de Marivaux)

Ella runs toward another child with white-blond hair as if their fair heads were halos meant to merge.

“Hi! Hi!” Ella is finally talking. Her vocabulary is limited. She still uses sign language for most communication. Down syndrome has affected her development. But she has always expressed enthusiasm with complete clarity.

The boy seems puzzled, but accepts our little one’s hug. His sister, perhaps a year younger, continues toward the parking area at the Museum Center. Then she hesitates. I suspect she isn’t going to miss out on the love her sibling is getting. Ella doesn’t disappoint her.

Ella, Grandpa, and I are on our way to the Museum Center. However, our three-year-old girl is in no hurry. Each step on the journey brings its own adventure. She sees a little girl in a stroller and blocks Mama’s path to ooh and ah over someone younger than she is.

While my husband and I apologize for the interruption I hear my name called. I see Marcia, a very special friend who has enlightened my life’s path in deep and beautiful ways. I’m both surprised and happy to see her. Her smile fits the halo image. An embrace feels in order.

She introduces me to Mama and the little one in the stroller. The child is on her way to nap time and barely tolerates Ella’s gushing. Fortunately, the little girl isn’t screaming yet. And I am grateful.

I don’t count the number of stops it takes to get to the door. After all, we aren’t late for a plane. A fountain, a cloud, or a block of cement can fascinate if approached with curiosity. Adult responsibility has damaged a lot of my spontaneity. If I don’t catch my granddaughter’s life lessons, she will show me again, without any sign of irritation.

In one play area inside the museum she insists upon putting on a sheriff’s vest by herself. Unfortunately it includes a scarf with an opening along the back that could be an extra arm hole. Although Ella never figures out how to maneuver the vest, she doesn’t give up, and she doesn’t throw a tantrum and blame costume construction for getting in her way. Life is what it is. Difficult. She has known that since she was born seven weeks early with multiple medical needs. She has overcome most of them.

One girl seems insistent upon going up a slide the wrong way. Ella waits patiently at the top. Within minutes the two children are playing together. The other girl runs back to Ella to give her a hug before she leaves with her grandparents.

One embrace has led to another. So simple and honest. And it took a child with a tripled twenty-first chromosome to begin the cycle. May one kind gesture direct another… and another…and another.

hug

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Every human being’s essential nature is perfect and faultless, but after years of immersion in the world we easily forget our roots and take on a counterfeit nature. (Lao-Tzu, philosopher 6th century BCE) 

A fellow writer and very successful blogger avoids the word, thing, as if it belonged in the bottom of the pit of grammatical horrors. He’s right; ninety-nine-point-nine percent of the time another word gives a better description. That doesn’t stop me from saying, “I’m not that interested in “things.” Most people understand what I mean. My second-hand furniture and ’97 Toyota with enough dents to belong in a demolition derby, are adequate for my needs. I don’t require designer clothing to feel okay inside.

Interior satisfaction costs far more than any expensive object. It means tearing up the me-schedule. It means listening instead of talking. Waiting instead of hurrying. It means abdicating the center of the universe position.

Interior peace comes with patience, with recognizing beauty in places that aren’t obvious. A good friend tells the story of her daughter when she was in kindergarten. “Mommy, my teacher is so beautiful!” But when the friend met the teacher she saw a woman with incredibly plain features. Not until the woman spoke and her eyes sparkled with love and enthusiasm, did my friend see what her daughter had experienced—true and deep beauty.

I feel that brilliance in the person of my three-year-old granddaughter, Ella. She has physical attractiveness, almost white hair, saucer-sized blue eyes. But Down syndrome has delayed her development. She sounds out words phonetically, gets excited about the magnetic letters on our refrigerator, yet has never said more than two words together. And those moments have been rare. Yet, she understands and responds with a love few adults have mastered.

I learn from her more than she learns from me. I would have to give up a lot of pride to even consider touching her level of acceptance, her innate wisdom.

Perhaps that is part of the reason why I renounce “things” in such a general way. No one noun covers the entire experience. The world isn’t clear enough to me yet, everything that I need, everything I don’t.

I require further lessons from less complicated folk.

having what you want, wanting it

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The sad truth is that most evil is done by people who never make up their minds to be either good or evil. (Hannah Arendt)

Computers fascinate my granddaughter Ella. She knows how to maneuver the icons on her Samsung Galaxy tablet, and her small fingers move with alarming speed from screen to screen. Sure, her tripled chromosome adds learning challenges. However, since she creates an atmosphere of joy wherever she goes, her efforts spread courage, too.

If Ella can work harder to reach a goal, so can I.

Since I have experienced the wonder and beauty of a child with Down syndrome, I wince when someone uses the R-word, that taunt that ends in a d. It is not used by the medical community, only by the unthinking. (By the way, Ella is a child with Down syndrome, not a Down syndrome child; the difference may appear subtle, but it isn’t. She is first a person, and second, she is a child who has a challenge to overcome. Also,  the word syndrome is not capitalized unless it is part of a title, such as the Down Syndrome Association where the emphasis is on an organization, not a person.)

Grammar, however, is secondary. An understanding of people is what matters.

Today is the day to pledge to end the r-word:   http://www.r-word.org/

Many folk who have handicaps have more determination than college graduates. Actually, with help from the caring, some people with special needs have earned college diplomas.

So, today, right now, replace that put-down word with respect. It goes a lot further and delivers a lot more truth.

r words

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