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Posts Tagged ‘Down syndrome’

Havoc and Peace

Posted in Uncategorized, tagged , , , , , , , , , , , , , , , on January 10, 2015| 6 Comments »

A wise man adapts himself to circumstances, as water shapes itself to the vessel that contains it. (Chinese Proverb) 

As I read an e-mail message with bad news that gives me chills, I wish I could be like the broadcaster who tells about a mass shooting and then shifts to a story about an adorable newborn zoo baby without missing a beat. Something incredibly ugly rises from the page as I follow each word; it haunts me.

Later I discover that the story wasn’t true. The truth is even worse because the lie had been designed to hurt and that hurt spread to the friend who sent me the message. However, her e-mail had asked for prayer—and I can’t rescind the positive thought I sent out into the universe. In fact, I wish I could have doubled it.

I don’t have permission to reveal either the lie or the truth, but any horrid example from the universal store of inequities would do. Besides, further reaction exacerbates the problem.

Sometimes when I hear the word outrage used to refer to a situation, personal or political, little warning signals flash inside my being. Anger can lead to action: an increased awareness, energy, gifts of money or time. But outrage triggers war. I’m-right-you-are-wrong yields more I’m-right-you-are-wrong, not a solution.

The multiple awful situations the world offers lose their power as I turn my attention toward the blessed places in my life. My youngest granddaughter’s speech is improving. She lives hope and love—it exudes from her like warmth from a furnace in Midwestern January. She has given her two older cousins sufficient example to affect their lives. They respect everyone. Down syndrome, autism, physical handicaps are superficial in their eyes. Kate and Rebe see deeper, into hearts.

The people who wreak havoc have hearts, too,—somewhere—often so injured even they can’t find them anymore. I wish I had answers for them, and for us who are surrounded by the damage they cause. I don’t know how to soften stone. But I know peace takes time. Peace may flow in my words, but I have to work toward it as hard as everyone else does when injustice affects the people I love.

The next message I read or hear could bring good news. There is always that very real possibility. Yesterday I listened to my two sons laugh and banter, as friends, allies. And I celebrated the moment. Today a little girl giggles as her grandmother leads her through the water at the Y. I feel the goodness of their moment through the waves.

Water, ego-less, shape-free, open to sea, pool, or sewer.

Peace and hope to all, wherever you may be.

hope

 

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More Than an Unexpected Gift

Posted in Uncategorized, tagged , , , , , , , , , , , on December 24, 2014| Leave a Comment »

No matter what he does, every person on earth plays a central role in the history of the world. And normally he doesn’t know it. (Paulo Coelho)

As usual, I’m eager to move to the next chore on my must-do-today list as my husband, Jay, gets a cup of coffee and continues to chat with fellow Y members. I sit quietly only when I am intent on an edit—or when complete weariness has almost knocked me over. He needs to socialize. My need to accomplish does not necessarily preempt his mission to celebrate the company of fellow senior citizens. I know my agenda needs flexibility, more smell-the-roses time. However, wind-up-and-go is my natural mode.

I intentionally breathe in and out slowly: breathe in to a count of five, out to a count of ten, a soul-cleansing effort. My list seems jumbled anyway. I’m not sure what I planned to do next, or what I have forgotten. I’m on auto-pilot and the plane may or may not have enough gas to get to my destination.

Then I notice Jay is talking to Nora, director of the senior programs at the Y. Nora has an attitude that brightens everyone around her. She is carrying a package. Jay motions to me to come and see it. I’m glad I didn’t insist that we leave the Y as soon as our class ended. The package is a present from Nora to Ella, a hand-made doll with a bright red crocheted dress and wrap. Nora and Ella are good friends. Our little girl has impressed Nora. Ella affects people without realizing it. Last month a young girl bought Ella a present at a rummage sale, because Ella had been charming. I think our youngest granddaughter’s extra chromosome has been misnamed; she has Up syndrome.

As I place the gift in the trunk of the car and prepare for our next errand, I sigh. My oh-so-essential list may or may not get completed. It does not matter. Have I made anyone smile today? Have I pointed out something good about a person that he or she hadn’t noticed? Have I spread a little sunshine, like Nora or like Ella do? Maybe those are the items I need to put first on my list.

To all, have a wonderful holiday.

 

A photo of Ella’s first printing, taken by another of her grandmothers, Alice. Maybe the E isn’t really backwards. It could be facing toward someone on the other side of where she stands.

Ella isn’t leaving anyone out!

Thanks for the photo, Alice!

first printing

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No Ordinary Ballet Class

Posted in Uncategorized, tagged , , , , , , , , , , , , , , , , on December 18, 2014| 4 Comments »

When you are loved, you can do anything in creation. When you are loved, there’s no need at all to understand what’s happening, because everything happens within you. (Paulo Coelho)

Preschool and kindergarten-aged boys and girls in mismatched socks to designate left and right leg movements, sit facing a mirror with their instructors and occupational therapists. The kids’ families watch ballet class begin—this is recital day.

A couple of the class members react to the rhythm of the music. Others move to their own inner melodies. Some seem shy; others outgoing. One little girl runs as if the polished floor were a glossy playground. A man, probably her father, repeatedly brings her back into the group. All of the children have Down syndrome; none of them fit a pre-cut so-called handicapped pattern. They are unique individuals.

I watch and take pictures that are too fuzzy to save. Perhaps for me this moment can’t be held in a square frozen in time anyway. The program continues as Ella takes the hand of the girl who has been running freestyle and they explore movement through large, pastel-colored hoops. I envision the imaginations of these almost-dancers explode.

No, this isn’t ballet in the traditional sense—it doesn’t need to be. Actually, I need to control a perfectionism I see in myself. I begin each day with enthusiasm, carpe diem all the way. Then my eagerness morphs into frenzy. By noon my energy frizzles. I often jump through self-imposed hoops without enjoying the current moment.

Perhaps it is the perfectionism in me that sparks annoyance when someone needs to give every detail about her son or granddaughter’s perfect SAT scores. “That’s nice.” But if that story began with a struggle that has a survivor element in it, my interest rises. I’d rather hear about the child with a disability who made it despite the odds. Or the tale about how a loving home changed the life of a troubled teen. Sure, a natural ability is good, but what is being done with that talent—besides a claim to superiority?

These children in the ballet class and their families don’t make I’m-the-best statements. They don’t apologize either. In a poem I had published in “For a Better World 2012″ edited by Saad Ghosn, one stanza begins with:

My granddaughter has Down syndrome, I say.

I’m sorry, the reply.

I’m not, my answer.

As I read those direct-not-metaphorical lines at the public library in April I saw eyes widen, some with surprise, others with a smile. The folk with a smile either knew my little girl or they knew someone like her. They understood resilience, possibilities, not an extra chromosome.

Love has enormous power. Unfortunately it doesn’t come packaged in a neat Hallmark card. If it did utopia would be as common as MacDonald restaurants and ants at a picnic. Ella knows the word no and says it clearly. She can be as stubborn as any other child. However, she has a lot to offer the world, and so do the other children in this class.

I don’t need to understand what is happening as I relax and enjoy the moment; I only need to know that it is good, and that my first Christmas gift is in the form of a queue of children. They move in an awkward oblong shape while holding streams of white ribbon, grins escaping like sunshine through the inevitable solstice.

how awesome you are

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The Art of Seeing: A Work in Progress

Posted in Uncategorized, tagged , , , , , , , , , , , , , , , , , , , , , , , on December 10, 2014| 4 Comments »

Vision is the art of seeing things invisible. (Jonathan Swift)

As I’m sorting the mountain of items on top of my dresser I find an old earring in a box of don’t-throw-out-yet-stuff—the mate was cracked and discarded in another decade. The relationship with the gentleman who gave it to me shattered long before the jewelry did. In another century. Admittedly I did not appreciate the gift at the time. It probably cost my fiancé more than I realized. But I needed to experience a profound personal loss to realize that the only reason I continued the relationship with this young man was because I didn’t think anyone else would ever take an interest in me. The two of us had nothing in common.

Now, as I discard that earring in the trash I forgive us for our ignorance. He had no idea how lost I felt at the time, and I had no way to explain the inside of a vacuum. My vision has changed; I suspect his has, too. He married someone else and so did I.

Now, many dark, bright, and muted-colored years later, my husband of 43 years plays Christmas music on our CD player while I clean. I recall Simon and Garfunkel’s Silent Night/7O’clock News from their “Parsley, Sage, Rosemary and Thyme” album of 1966. It appeared during my own difficult time. Crime reports and promises of continued war played in the background of gentle sound, a bizarre kind of counterpoint. In some ways not much has changed. The challenge of peace remains immense, even on a personal level.

Sure I like days where the sun shines with amiable warmth and I have enough time to do whatever I want, whenever I want to do it. I doubt that these are the moments where I grow most, however. Chances are if my life had been cushioned in silk and affluence in a the-world-centers-around-me existence I wouldn’t appreciate innate beauty.

I wouldn’t smile all the way from my lips through my heart and into my gut every time Katie J. posts a new entry in her blog for Elysium. Kyle, like my Ella, has Down syndrome. Katie tells about the joys of her young son’s life, but she does not minimize the challenges. I appreciate her honesty, as well as the information she shares about Trisomy 21, what it affects and what it doesn’t. Both Kyle and Ella have a deep capacity for love without strings attached.

These are kids, scoffers may say. You can’t predict a life based on early cuteness. Yet, I have met adults with Down syndrome who have not lost the gift of innocent goodness. And it is a gift.

I think about that silly box on my dresser with mismatched, lost or broken pieces. This is probably the time to get rid of those useless attachments and become more like Ella and Kyle. Things will never make me happy. People-who-care can; they have. Knowing people who don’t have an agenda make discarding the past even easier.

happiness without a reason

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Wisdom 101, No Classroom Necessary

Posted in Uncategorized, tagged , , , , , , , , , , , , , , , , , , , on November 6, 2014| Leave a Comment »

You cannot create experience. You must undergo it. (Albert Camus)

As I get into the car to pick up my number-one granddaughter from school I wonder how much energy I have left in this sixty-eight-year-old body. Hopefully, I’ll last through the hour and a half before Kate’s music lesson. However, Kate’s enthusiasm is contagious. She continues in high gear to tell me about school events, and she doesn’t soften the blow about the difficult moments. I am grateful for my new hearing aids and for a restaurant that isn’t exceptionally noisy as she tells me about unfair situations that affect other kids and how she discerns her part in helping. Her wisdom shows restraint as well as concern, the ability to know when to jump in and when to wait for a safer, more effective moment.

Every freckle on her face glows and I revel in her fresh beauty.

I am now awake, aware; chances to learn surround me. Sometimes those moments are pure gift, the opportunity to simply say thank you. My most recent short story at Piker Press, Return of the Goldfinch, was published one day before a long-time friend’s brother died. Judy had taken care of her brother in her home during his final days. The story comforted her. While I can be grateful for that, the greater gift is my awareness of a friend who gave her home to a brother who could give nothing of material value back. Judy gives because she is Judy. I am blessed because I know her. My spirit awakens as I think about her. She gave her brother the opportunity to fly from a weakened body. In peace.

My youngest granddaughter, Ella, has led me toward the narrower, higher path since the day she was born. I had the notion that I would spend my day writing to my heart’s content. Page upon page would pour from my spirit because I had just retired. Time could now be mine! A divine higher power had other plans. Ella was born seven weeks early, with Down syndrome; she would need two surgeries before leaving the hospital. A giraffe bed in an intensive care unit was her first home. Since her parents needed to return to work I was among the chosen caregivers. Not only did my spirit deepen so that I could write on a more effective level, I made a new friend—an infant who would become my teacher.

In fact, when Ella was barely crawling, my husband was watching a movie too violent for me. One scene came painfully close to my own experience. That long-ago incident does not need to be relayed  here, but as the drama unfolded I gasped as if I were the young woman on the screen, as if time had removed almost fifty years of my life in the flash of a movie frame. Ella climbed into my lap. She looked directly into my eyes as if to say, Look at me, not into the past. And I saw such beauty and compassion in my granddaughter’s eyes that I knew wisdom lived inside this child. I felt blessed to be in her world.

Yes, the narrow road ahead that involved her care would be difficult. Not everyone would understand that a child with special needs gives more than the cost entails.

Easy isn’t always better.

I suspect that if I had taken a nap instead of spent time with my oldest granddaughter on this ordinary Wednesday afternoon, I would have awakened groggier than ever. And this train of thought would have never begun.

I wonder what opportunities tomorrow will bring. But that is on tomorrow’s agenda.

conquer fear beginning of wisdom narrow bridge

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First Impressions, Adjusted

Posted in Uncategorized, tagged , , , , , , , , , , , , , , on November 1, 2014| 3 Comments »

Life is 10% what happens to you and 90% how you react to it. (Charles Swindoll)

Several weeks ago a woman at the Y’s Waterpark complained to me that I carried my granddaughter through an adults-only-time section a few minutes before that time ended. The lifeguard on duty apologized to me for her rudeness. Apparently she ranted further when her husband arrived. Although that same woman returned my intentional I’m-not-taking-this-personally smile later in the locker room, my heart had not forgotten the incident, and I had her pegged as a chronic complainer.

Now weeks later I see her again at the park. At first I avoid her. But, I do not want to limit the space I can move because of one person and a maybe-encounter. Besides, I could be wrong. The woman is in the swirling whirlpool center inside the walking channel. Ella wants to explore the shallow edge by the wall. The woman is sitting against one side. She is not facing us. When my granddaughter gets close to the woman I grab my little girl and begin several pretend games. We fly across a lake as birds; then we cross in make-believe boats, as if the area the woman fills were huge and not the space any one ordinary-sized human being can take up. Finally, Ella pauses and says, “hi.” At first the woman does not respond.

To be expected, I think, and then reach for my precious girl. Then the woman turns around. “You were here with your grandfather last week weren’t you?” she asks Ella in a pleasant voice.

Ella says nothing so I respond. “Yes,” I answered. “She was.”

“And we tossed ball together.”

I remember a small green rubber ball Jay brought last week. One week Jay takes an exercise class during this time; the next week I do. (Our first choice is spending time with Ella.)

“I think Ella remembers you,” I say.

And suddenly this woman and I are talking as if we were old friends. A little girl with very little language has taught me another lesson about being open to other people, not making snap judgments based on incomplete evidence.

“Have a blessed day,” I say as the woman leaves the Waterpark area. My day has already been touched by the extraordinary.

first impressions words to inspire the soul

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A Gift for Daddy—A Gift for All

Posted in Uncategorized, tagged , , , , , , , , , , , , , , , on October 25, 2014| 3 Comments »

There are no seven wonders of the world in the eyes of a child. There are seven million. (Walt Streightiff)

Ella runs into our house. Enthusiasm exudes from her being. She carries a present for her daddy’s birthday—from her. The package is about the size and shape of a pound of delicatessen hamburger; it is gift wrapped in her artwork.

Daddy Steve laughs. “She told me in the car what it was: coffee.”

Of course we can’t wait for the traditional present-opening moment: dinner and then a loud rendition of the birthday song, careful cake slicing that gets messy anyway, followed by ice-cream scooping. “Do you want to help Daddy open his present now?” I ask.

A spoken answer is unnecessary. Her jump into action is response enough. A bag of bold-flavored coffee appears under the wrapping. And Ella doesn’t know that her real gift is the love of a blonde five-year-old girl with a spirit that could charm a wolverine.

She will need that power soon. Ella was born with an A/V canal defect. Only half of her heart worked. Her surgery was successful. She plays with the same vigor any other young child displays. However, a routine echo cardiogram showed a blockage. It is causing no apparent problem now, but as she grows it will interfere. She faces open-heart surgery again after the first of the year.

Her surgeon has an excellent reputation. In these days open heart surgery is almost a routine procedure. However, the gentleness of her heart requires no repair. She draws people to her with gravitational power. She gives lessons: in patience, spontaneity, forgiveness, and resilience. Moreover, she charges no fee, only a willingness from her observers to change, to be aware of perspectives, to see hidden beauty that has always been there. Unnoticed.

I think about how I felt as a child as I stood, the top of my head at a grownup’s belly button. A higher stature seemed unreachable. Moreover, I felt perpetually unworthy. An adult was another species, a creature-from-another-world who didn’t spill juice or make too much noise in church. The importance of rules of behavior was ingrained into my soul long before I could read or prioritize. So, life’s directives were vague, negative, built on shame.

Since then I’ve learned to see differently—I don’t live in the past. It’s simply a place to visit now and then. However, I make sure that my grandchildren and I live on the same planet and that we learn from one another. As an adult I may have the advantage of years, but my granddaughters offer freshness.

Ella has Down syndrome. Many people may look down on her because of it. But those who look into her eyes know that she offers all that she is—and she doesn’t even know that is unusual.

when a child gives you a rock

 

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What Do You Want To Play—Who Will We Be?

Posted in Uncategorized, tagged , , , , , , , , , , , , , , , , on October 10, 2014| 3 Comments »

If you see the world in black and white, you’re missing important grey matter. (Jack Fyock)

Ella’s charm draws to her at least seven children from the YMCA pool.

“Will you play with me?” one girl asks, and Ella nods.

“What do you want to play?” the girl asks.

Ella hesitates.

“How about pretending to be frogs?” I suggest, slowly stepping away, giving the kids space around my precious granddaughter.

“Yeah,” this leader girl answers. “Frogs!”

“Hop. Hop,” Ella says moving along in the shallow water.

One boy with black curly hair shows me his swim vest, his ebony face bright with pride. “I brought it from home.”

“Looks great,” I tell him.

“Are you her mom?” one blonde girl asks me. I grin, grateful for her edited eyesight.

“No, I’m her grandma.” I wonder if grandmothers are supposed to hop like frogs in shallow water.

One look at the clock tells me this time will be short. Ella and I need to meet Grandpa in the lobby in about twenty minutes for our picnic lunch before Ella goes to afternoon pre-school. “Ten minutes and then we have to get dressed,” I tell her. “I brought tortilla chips today.” They are one of her favorite snacks. I hope they are enough encouragement to get her out of the water.

“No,” Ella responds.

“She can stay here,” one of the children offers.

I smile at the boy’s innocence.

“Is she a baby or does she just talk like one?” another boy asks. His voice indicates no condemnation, only curiosity.

“She isn’t a baby…but she is learning…” I answer, without any hint of censure in my voice. I don’t explain the what-or-how-of-her-struggles-or-accomplishments. The boy doesn’t pursue the issue with further questioning. Besides, I’m not sure how to answer. Each person learns at a different rate anyway. Ella has been reading for months, at least. Someday I hope to catch up with her when it comes to acceptance of people as they are. However, fine-tuned tongue movements and some motor skills may take her a bit longer to master.

Our little girl is a fresh five-year-old. She has not yet faced the full brunt of prejudice inherent to the life of anyone born outside the so-called norm. The little folk in the pool have not yet learned to recognize the facial characteristics of Down syndrome. Besides, our granddaughter wears them beautifully with her sunshine-white hair and huge blue eyes. They defy the brightness of a perfect summer day. Her smile could melt an iceberg. The children seem to recognize that gift intuitively, knowing she is real and a dependable friend.

The children wave good-bye. Our Y friends stop by our lunch table to say hello, more to Ella than to Jay and me. And that is okay. Ella isn’t worrying about what happens tomorrow—or the next day. She cries when she needs to cry and the tears end easily. She laughs when she recognizes the humor in life. And that happens often.

I’m not saying that every day is easy. But few things that are worthwhile come without effort anyway. I guess Ella is my constant reminder that the world in black-and-white misses out on a lot of color—as well as grey matter. Later I have the opportunity to leave the house to go to another exercise class, if I want to go. But, I don’t want to miss an extra minute with Ella. Not today. She may have a life lesson I will need to use later.

flying turtle

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Lively Conversations on a Dead Cell Phone

Posted in Uncategorized, tagged , , , , , , , , , , , , , , , , , , , , , , on October 2, 2014| 1 Comment »

Innocence is one of the most exciting things in the world. (Eartha Kitt)

My old cell phone hasn’t had a battery for who-knows-how-long. However, five-year-old Ella picks it up and brings it to life with her imagination. She mimics the motions she has seen in adults, complete with subtle movements and voice tones. When her conversation has ended she closes the flip top slowly, deliberately. I’m the follower in this scenario, the fortunate observer. Ella understands but is not able to fully verbalize what she knows.

I guess the phone has rung again as she says, “hello,” hands the blackened screen to me, and adds, “It’s Dy,” short for Daddy.

She grins when I say that he is playing baseball and not at work. Daddy is working, but explaining an office setting to a five-year-old doesn’t create fun play.

“Should he stop at the store and get bananas on the way home?” I try for mock seriousness and hope she buys it.

“Yes,” she answers.

“What else?”

“A bike,” she adds.

I refrain from laughing. Nothing seems random in a child’s world. After we finish with several quick turns saying hi, bye, and what-are-you-doing-now, we enter a pretend playground where Dora, the Explorer; a tennis ball; and a plush ladybug all take turns going down a plastic slide. Reality is suspended for a while.

And I feel strangely free, privileged, invited to this spot on the floor surrounded by toys on an ordinary Thursday morning.

The folk who read my blog regularly know that my youngest granddaughter has Down syndrome; Down syndrome does not own my granddaughter. She continues to play as I get her ready to leave for the day. I have trouble getting her shoes on properly. They need to give her adequate ankle support. She seems to understand my frailties and doesn’t fuss. I thank her for her patience and wonder how much she intuits. This little blonde with the huge blue eyes is amazingly easy to love.

I envision her at Daycare after school some day as she plays with a toy phone. Does she ever say, “Hi, Mawmaw?” This isn’t the kind of thing I am likely to know. My hearing isn’t that good within the same room, with amplification, much less from one part of town to another. Nevertheless, I smile thinking about it.

She smiles back now. That’s more than good enough.

the world as it should be

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When I Grow Up…

Posted in Uncategorized, tagged , , , , , , , , , , , , , , , , , on September 9, 2014| 1 Comment »

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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