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Posts Tagged ‘family’

Life is like a landscape. You live in the midst of it, but can describe it only from the vantage point of distance. (Charles A. Lindbergh)

Strange how memories hit when they are least expected. I’m looking into the mirror at my 69-year-old self. I remember seeing the same younger face at least 53 years earlier. The scene is in my parents’ bedroom at my mother’s vanity. And I’m trying to turn my thin, curl-resistant hair into the bouffant my peers wear. I know nothing about regularly scheduled haircuts. That could help. But the money for such frivolities isn’t in the family budget.

However, the expression I recall is not mine but my mother’s, reflected behind me. She’s exasperated with her superficial daughter, focused on appearance. I admit the color is fine, a bright strawberry blond, but the gold never reaches below the follicles, into my scalp, into my being. I believe what my classmates have told me since first grade. I am the outsider. The kid with names that come with a taunt.

Mom complains that she has taught me to be a larger-minded girl, a Ten-Commandments person. I cut my rant short, but a deeper less-than has set in. I put down both the comb and my own sense of self as well.

My mother did what she believed was right. I don’t blame her. On an intellectual level she had a point. However, perspective needs to be discovered through example and experience, not imposed.

Now I look into the mirror in my own bedroom. My hair is cut short to avoid a need to style. I no longer care about beauty. Don’t ask me about fashion; I don’t follow the trends. And I don’t apologize for my wrinkles. They carry experience. Some of that experience continues to be incredible. Some of it cracked me more than I want to admit. Some of what-I-carry-from-the-past involved others’ hurts. And I couldn’t always help.

But the holes are what create the beauty in lace, the negative space in art, the places that force a person to recognize need. The cracks are where the light shines through. And I’m not sure I am sorry about the difficult times. They taught me to look into the eyes of another person and see more similarities than differences.

Moreover, I had good friends along the way. I meet with some of them every week—others less often. But I know I am not alone. Not an outcast. The notion is an illusion.

I have learned to rewrite the script and speak for a mother who didn’t know what to say, to ask questions to get to the real issues. “Yes, I know this is important to you now. However, this is the gift I see in this moment…”

Then, perhaps, any mirror could reflect more than an image that appears backwards, and permit possibilities. I can’t say I know where they will go. I don’t. Today’s landscape shows no more than a few clouds along the horizon, never within reach, always changing. Always, always changing.

beauty of the broken

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Children don’t need much advice, but they really do need to be listened to and not just with half an ear. (Emma Thompson)

Eight-year-old Rebe and I have a girl-bonding day. We are mermaids at the YMCA Water Park. Young mermaids! I need a lot more imagination than she does to fill this role. She explains the scenario and I follow, adding as much absurdity as I can.

The pool is divided into sections. Upper-class kid mermaids swim in the larger, shallow, easy-to-manage section. The lower class lives in the slightly deeper territory. I tell her I can’t fathom wealth, so I will tread water. (I prefer this area anyway.)

Of course her game morphs and she spends most of the time in the freer kicking space. She can swim. I celebrate listening to her banter. She doesn’t want to leave as the time grows closer.

“One more minute.” She raises one finger. Then she smiles. “Five more minutes?”

Rush-hour traffic isn’t going to get any better one way or another. Dinner is semi-prepared. Daddy won’t be picking her up for two and one-half hours.

“Five more minutes,” I say.

She grins.

Then a tall, slender woman pushes a young man in a wheelchair into the water. The young man is paralyzed. Rebe watches as the woman, smiling, pulls him from the chair and works his arms and legs through the warmed water.

“Therapy?” Rebe asks in a soft voice.

“I think so.”

“Or fun?”

“Maybe that, too.”

A huge man with skin the color of milk chocolate enters the water. He helps. I think about what a good idea his presence is. His size and strength could be helpful getting the young man back into the chair. The thin, pale woman and the large man laugh and joke with the younger man. I see the paralyzed man bat his hand at them. A response, probably enormous judging by the cheer of his two helpers.

“Therapy,” Rebe repeats. “Or maybe they are family.”

I pause taking in the beauty of my granddaughter. The two assistants look nothing alike. Yet, Rebe and I both know families—more than one—with a father the color of dark honey, fresh graham crackers, or gourmet licorice, and a mother as pale as apple blossoms or an unpicked peach. Rebe looks inside to who an individual is. The outside is secondary. She goes to a school where color is superficial; I live in a neighborhood where skin colors match the picture below.

Probably not, I think. “Maybe,” I answer.

I tell Rebe it is time to go back to my house. Grandpa is waiting for us. But I am grateful for those five extra minutes. They brought a larger gift than 300 extra seconds in pool water.

skin colored crayons

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I am incapable of conceiving infinity, and yet I do not accept finity. I want this adventure that is the context of my life to go on without end. (Simone de Beauvoir)

As autumn puts on the last of its show I remember the mini-vacation Jay and I took at Hocking Hills. I walked the trails and paid no attention to that silver band around my wrist with the tiny clock on it—I could have been wearing my watch upside down. It wouldn’t have mattered.

Perhaps that freedom gave me the illusion that utopia existed, at least somewhere; I felt healthy, young, my chi as vitalized as it had been when I said I-do in July of 1971, when I felt as if I would be age 25 forever, continuously renewed. In Hocking Hills nature and I seemed unified. Beauty appeared in every direction.

The real world has returned. Another YMCA friend faces chemo and then radiation. A fellow writer friend fights for her life in an out-of-state hospital. I discover that several people aren’t doing as well as I had hoped. My sister-in-law has been to hell and back again. Her attitude, however, glows. She encourages others. She lives the life-explanation Francis Weller explores in the October issue of Sun Magazine, The Geography of Sorrow. Pain and loss, joy and peace co-exist in order to create a complete existence.

In our American society we expect to begin and end with perfect emotional control. Weller analyzes our bias against public grief. I read the article so slowly it took me several days to absorb each word.

I think about this again as my two older grandchildren, my husband, and I watch Where Hope Grows. The girls have already seen the movie. Rebe and Kate are only eight and eleven years old. Yet, they get it. They suggested the movie. Not every reviewer agrees. The creators made the mistake of using the word, God. However, I recognize more showing than telling, more action than preaching.

Calvin Campbell has sought the answer to life through drink. His choices inevitably fail him and he goes to Produce, a young man with Down syndrome, for the secret to his happiness. An unexpected story unfolds.

My granddaughters know how tragedy looks and feels. Kate’s friend fell through a patch of ice when she was three-years-old; the friend is permanently disabled. I wrote about it in a poem I titled Chrysalis. It was originally published by Saad Ghosn in the annual anthology, “For a Better World 2012.” It will be reprinted in Piker Press on November 23. 

The girls also know how to love. When their young cousin Ella sees them she is ecstatic. She talks about them often. Ella, of course, like Produce in Where Hope Grows, knows the secret of happiness. She is satisfied to be herself. She accepts the moment, and lives it fully.

Perhaps full joy isn’t found in happily-ever-after dreams. It lives in the mundane, the muck, the malformed, and the miracles revealed through inside-out transformation. Into the whole.

strong people don't have easy pasts

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The soul is healed by being with children. (Fyodor Doskoevsky)

Halloween. And I offer to stay at my son Steve’s house to wash dishes. But his girlfriend Cece says, “Let’s all go. I will wash the dishes when we get back. Then you relax and play with Ella.” Cece doesn’t want me to miss out on the fun.

And fun is only the beginning. “Candy. Look. More candy,” Ella exclaims after she has stopped at only a few houses. Her costume is inexpensive and hand-wash-only fragile, the kid-popular, Doc McStuffins. However, Ella’s sweet smile brings her extra treats at several stops.

At first she approaches each house with her bag behind her back. Then she eagerly opens it with an excited “trick-or-treat.” Her cautious move has become a run. The neighborhood knows how to celebrate. Groups gather outside with bonfires, cackling witches, lit pumpkins. Kids fill the streets. Two children are in wheel chairs. I pause to say Happy Halloween, but don’t linger for conversation. Tonight is the time for action.

“Look,” Ella says to passers-by. She opens her bag and displays her treasures with pride. No one chides her or mentions that she has special needs.

At one house an empty chair blocks the sidewalk, but the front door is open. Ella runs toward the golden-glow space inside the house. The empty chair signals my intuition. I decide to follow her. An elderly man answers.

“Oh dear,” he says. Apparently his wife, who should be holding down the fort, has left with the treats.

Instead of responding with disappointment or anger Ella reaches into her bag and pulls out a box of candy. The man doesn’t understand at first. Then he realizes that Ella is sharing from her bounty.

His wife arrives and gives Ella a few extra pieces. Our little girl grins. Wearing her gratitude on her face.

As Ella descends the stairs toward Daddy, Cece, and Grandpa I tell the couple that our granddaughter with Down syndrome has had two open heart surgeries. She is resilient. Her open heart touches anyone who will recognize her gift.

The man has tears in his eyes. He did not accept Ella’s candy. He did receive her touch of love. And all Ella needed to do was to be Ella.

And I am grateful to Cece, too. Sure, I would have been happy to stay back at Daddy’s house, wash dishes and hand out candy. Instead I have the privilege of watching beauty in action.

The plates and utensils wait until we came back. Ella does not fuss when Daddy does not allow her to have all of her bounty at once. She savors each bite. I hope to learn how to savor each moment, too.

learning from children morning coach

 

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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 remind myself every morning: Nothing I say this day will teach me anything. So if I’m going to learn, I must do it by listening. (Larry King)

Rebe, my soon-to-be-eight-year-old granddaughter, loves to play any game that involves mommies, dolls, and the lives of families. My role changes at her whim. And I am okay with that. My pretending stays within the realm of fiction. Reality intervenes, even in fantasy. Plot, grammar, logic, and a reasonable timeline are required. Even an insane character requires motivation, albeit skewed.

Play doesn’t come naturally for me anymore. Unless it includes humor. Then it isn’t really pretend; it’s called drama. Too much time has passed since I wanted toys for Christmas. Sometimes I act the part of Rebe’s offbeat daughter.

“Mommy, can I drive your car to kindergarten? I won’t smash it into a tree this time.”

That makes her laugh. Or, she tells me I’m in fifth grade not kindergarten, and the event never happened. Another reason why following Rebe’s imagination is impossible to follow. For the most part however, I listen, and discover who my young descendant is.

At first she is the mommy. Then she takes her baby with the soft tummy to the doctor. And she assumes the role of pediatrician. I’m not sure whether I am the sit-in for the mommy or an older child as she examines baby with makeshift instruments: a plastic spoon and knife, a key chain, a puzzle piece.

Her expression turns serious. “Most babies are normal,” she says. “And that is good.” Then she pauses after more pokes and probes and faces me. “But this baby has special needs. And that is good, too.”

She hands me the doll. My jokes have disappeared. I am in awe of a second-grade girl who speaks with wisdom. The softness of the toy and the softness of her words sink into me.

I have nothing to say.

doll

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The voyage of discovery is not in seeking new landscapes but in having new eyes. (Marcel Proust

Ella is scarcely buckled into her car seat after kindergarten when she dumps out her backpack. “See,” she says opening a black binder. “My homework.”

“This is mine,” she adds showing me a page with squiggled lines of crayon. “I color.” Papers fly all over the back seat. I grab them. My juggling skills need practice. Jay is driving. I am sitting in the back seat with Ella—not to spoil my granddaughter, but to spoil me.

She turns to an earlier page. The paper clip sealing those completed pages flies off. I have no idea where the clip belongs, even if I could locate it on the dark floor. Chances are her mommy will know what to do. For now I gather the loose items into Ella’s backpack and ask our granddaughter to pretend to be the teacher. I will be the student.

She points to numbers one through ten and identifies them in a clear, I-know-this voice. If I ask her to repeat the lesson she will refuse. Either I catch it the first time or lose. Ella will not perform. She has been reading phonetically for over a year. On her own terms.

See-what-I-know is not in her repertoire.

Eventually, perhaps, she will learn how to play the going-to-real-life-school-game. For now I try to discover what she understands from what I can discern. Not from what I assume.

I kiss her on top of her white-blond head. “Want to go to the park?”

“Playground,” she answers.

I smile at an even-better-than-yes answer. She has chosen a synonym.

“You’ve got it!”

Our little girl may carry an extra chromosome, but she sure isn’t a syndrome. Yes, it may be easier to say Down syndrome child—but it isn’t accurate. She doesn’t fit into a category, a label. She has blue eyes, a winning personality, straight blond hair, the flexibility of a wet sponge, and Trisomy-21. She has the syndrome, but it is only one small part of who she is.

And I wouldn’t want her to be anyone but Ella. She reminds me of life’s priorities. They live in her spirit. Because of her I have the opportunity to become a better person. A little bit at a time.

We learn together, taking turns as teacher and student. Student and teacher…Graduation isn’t on the agenda. We both continue to grow.

at West Fork park September 14, 2015

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When will you learn that there isn’t a word for everything? (Nicole Krauss)

Ella has had enough play for the evening. Daddy is playing in a softball tournament. His team won the first game and the second is in progress. She doesn’t even want my iPad, usually a sure thing. She eases into my lap as we sit in the concession area and asks for her friend Nona. I didn’t see the little girl during the first game.

Nona is years younger than Ella. But our granddaughter doesn’t limit her friendships to children her age. Nona has a sparkling personality. And she has inherited artistic skills. I suspect that she and Ella communicate on non-verbal levels, through action, color, play. Little people see more than adults realize.

artwork by Nona Adams-Jones

artwork by Nona Adams-Jones

Ella puts her head on my chest. I straddle the hard bench and I’m amazed at the length of time my senior body remains still without stiffening into one four-foot-eleven-inch cramp. Something innately beautiful in Ella softens me.

Simultaneous loud conversations merge into a rumble. Ella’s arms are covered with dirt from the playground area. Her hair could use a brush. At the table across from me someone spills a beer into peanut shells on the concrete-slab floor. The noise and distraction don’t stop my granddaughter from falling asleep. I can’t take off her glasses without waking her.

This frozen-grandma scene would not appear to be pleasant. Nevertheless, I choose to remember it—every detail. I have no desire to join the laughter surrounding me. I would rather savor holding this blonde little girl, recognizing the trust she has in me, basking in her unconditional love. Another kind of artistic moment.

Soon she will awaken, sleepily, and see Daddy. He is her world. She is excited to give him her coloring page from daycare. I will give up this moment soon enough. For now there is no need for words. I remain still. Privileged. The grandmother of a girl with Down syndrome and up gifts.

Art comes in all forms. Sometimes words fail when they try to capture gifts that develop and change as this moment eases into the next.

shirts from past celebrated Buddy Walks

My husband and I wear these often as we watch our Ella grow.

Buddy Walk shirts

 

 

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You must have chaos within you to give birth to a dancing star. (Friedrich Nietzsche)

Perhaps I have too much chaos within me because I feel crowded in water aerobics class—actually there are only about twelve participants. Not exactly a mob. But the instructor directs us to continuously travel back and forth. The possibility of bumping into someone seems high to me.

My energy feels almost electric. I’m more than busy at the moment with babysitting duties and preparing for a newly published book to appear. In the water that electricity seems dangerous even if it is only a metaphor. So I swim into the deeper water and tread through the moves. I love the feel of suspending. And I see another benefit: a tall friend is here today. She buoys me with her spirit.

She and I look as different as a mountain and a valley. I need to stand on a step stool to get sufficient pressure at the locker’s swimsuit spinner. At six-foot tall she is at the deeper end of the indoor pool, but doesn’t need to kick to stay afloat. I look up to her physically—and as a person.

This lady talks about her dedication to family with the same offhandedness a person would use when counting loads of laundry. She gives because the need is there. She is not aware of her own beauty.

As we talk I sense similar teen experiences. When adolescence hit I would have pronounced angst with an accent on every letter if sharing feelings had been permitted in my home. Since they were not, the not-good-enough notion imploded and almost destroyed my spirit. Changing that attitude has taken time and effort. But I don’t regret the past. Because of it I am less likely to judge someone else. I also have  a storehouse of great fictional characters, all based on a confused, normal young girl—me.

My friend shares a current difficulty she is facing. It sounds familiar. She has a family member in hospice. Cookie-cutter supportive care doesn’t work for everyone. Sure, it would be great if so-and-so would play the let’s-have-fun-while-we-can game. But, sometimes the individual wouldn’t have played when he or she was twenty-three.

Later, I see my giving friend helping someone else. Her gift delays her departure when I know she has other tasks to perform, a long agenda for the day. I would like to give more details about that moment, but don’t want to break this woman’s anonymity.

Instead, I simply shout-out thanks into the electronic universe and hope treading water with her has brought some positive energy into me. I am thinking about her now with the hope that my words serve as a mirror reflecting the goodness I see.

It is contagious, in a positive way.

garland of beautiful deeds

 

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An ability to simplify means to eliminate the unnecessary so that the necessary may speak. (Hans Hofmann)

 A warning on the side of the pool reads: eleven feet three inches deep. Even if I were tall enough to function in my kitchen without a handy-dandy step stool, I would need to tread. And that is okay with me. Making peace with something larger than I am seems to be the right move. Actually, making peace with me may be the next goal.

In a recent blog I wrote about the week when I battled daily headaches. A beautiful, psychic, and talented massage-therapist friend brought me unexpected answers. Sure the weather and stress were valid factors in my discomfort. But she discovered clues hidden inside my muscle memory. And she helped me to diffuse those interruptions into the universe. Then I could begin again. And accept both my gifts and need-improvement areas. Amazingly I was having more difficulty accepting success than frailties.

As I was growing up girls were not encouraged to do more than scrub floors and find a husband. In my life compliments came from outside my family every other blue moon, if I was lucky. I wouldn’t have considered repeating encouraging words at home. My mother would have shot them down. Her aim had bulls-eye accuracy.

However, I gained other-side-of-the-coin benefits from my experience: encouragement matters. The facade a person presents is not necessarily who he or she is inside. I have met saints as well as people who are more than a little rough around the edges. I have never met anyone who wasn’t human. Usually superiority claims fail somewhere—so do inferiority assertions.

The pool doesn’t care who enters. It makes room for a timid-toe or an entire body, whether it belly flops or swan dives. Not many people have come to the Y pool today. The sky is gray, overcast. Rain is expected at any moment. But a woman somewhat younger than I am joins me and my husband. Something about her radiates common interest, although I have no idea what that could be. I ask her name and make a mental note of it. We are both interested in the arts.

Before long we share who we are. In more than a superficial I-like-chocolate-and-movies kind of way. I feel honored by her sincerity. She hasn’t had an easy life. Yet, she gives to her family and doesn’t complain about it.

She inspires me and I doubt she realizes how much. Her sharing verifies what I am learning. Body and spirit work together. Opportunities to grow abound. Even the fact that a gloomy day has kept the crowds down feels like a gift. We would not have had the freedom to express ourselves during an every-whisper-is-heard moment.

“I hope I see you later,” I tell her as my husband and I leave.

I mean it. But even if this time is meant only for the few minutes we shared it is worthwhile.

As I hang my wet towel on the back porch I look out into the yard and speak to my recent comrade, even though she is probably busy tending to matters more difficult than anything I will need to handle tonight:

You reminded me that beauty is not sterile…

A statue is chiseled, not daintily pecked…

Worthwhile takes a while…

And when the necessary speaks, love needs to be the final word.

Thanks.

learning to be brave and patient

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