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Posts Tagged ‘childhood innocence’

Kindergarten, Ella-Style

Posted in positive thinking, tagged , , , , , , , , , , , , , , on September 15, 2015| 2 Comments »

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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Little-People Art, Creating It and Living It

Posted in positive thinking, tagged , , , , , , , , , , , , , , , , , on September 2, 2015| 3 Comments »

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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The Curse Under the Freckles—from the first dot

Posted in positive thinking, tagged , , , , , , , , , , , , , , , , , , , , , on August 22, 2015| 4 Comments »

“What makes the desert beautiful,” said the little prince, “is that somewhere it hides a well…” Antoine de Saint-Exupéry

As I study Philip R. Rogers’ powerful rendering of my main character in “The Curse Under the Freckles” I recall the bottomless well when the story began, and the empty buckets that came to the surface. “The Curse Under the Freckles” can also be found at Joseph Beth online.

When Chapter One appeared in my first draft the tale had a different title as well as an older audience. I wanted to take a third-grader’s vocabulary and write a book for seventh graders. Although my granddaughter with Down syndrome was already showing an interest in every word in her story books, she opened my eyes to the larger world of kids with special needs.

Older children with limited reading abilities do not want to pick up a story about bunnies and kitties. Yet, the adventures prepared for teens and preteens contain too many words, too many syllables.

As I put together scenes, however, I felt as if I were trying to build a believable fantasy with stale super-sweet mini-marshmallow bricks. The plot reflected it, as predictable as an alphabetical listing and twice as boring. No subplots, insufficient conflict.

Bottom line—I wasn’t ready to serve. Many people believe that writing for children is easy. It isn’t. The editor and publisher’s expectations are higher for the author of children’s material.

Stories need to be fresh and entertaining yet stay within the realms of a young person’s understanding as well as the limits of respectability.

I don’t remember when I knew that giving up on my original goal was no longer an option. But I do know that is when the story took off—with plenty of hurdles of course.

Chase Powers, my hero, lost a few years. He became eleven instead of fourteen. He developed a sense of humor. His foes grew mightier. Some of my critique partners began comments with, “I don’t get this at all. But then I don’t even like fantasy…”

Oh well! Oh, very deep, what-the-heck-is-down-that-imagination-of-yours well?

One of my magical characters says, “It takes no courage to climb a steep mountain when you have been lifted to the top.” Sometimes this writer needs to listen to her own creations.

In the future I hope to help kids who have difficulty reading by writing in a style that is super-easy to read. This book travels through a 560-660 Lexile measure, fifth to sixth-grade reading level.

Perhaps, if I work hard enough I can tell a story with small words that touch and capture the wise. I know it can be done. My grandchildren have shown me that route. Often.

I’m not there yet. In the meantime I plan to have a signing at our local YMCA, and give a portion of my earnings to their autism program. These young persons have a lot to give; the program helps them to find those gifts. I have no idea how much water I can bring to the desert. But those extra drops aren’t noticed in the ocean.

One drop, one word, one action at a time…

back cover the curse under the freckles

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Tall, Short—But, Similar Inside

Posted in positive thinking, Uncategorized, tagged , , , , , , , , , , , , , , , , , , on August 18, 2015| 4 Comments »

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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The Miraculous Stove Repair

Posted in kindness, positive thinking, tagged , , , , , , , , , , , , , , , , on July 29, 2015| 4 Comments »

One way to get the most out of life is to look upon it as an adventure. (William Feather)

One more headache. I’ve lost count of how many I’ve had in the past few weeks. A mix of unstable weather and stress are the probable causes.

Walking with a heated bean bag on the back of my neck comforts my upper spine but doesn’t do much for my posture. I look like a reluctant version of the Greek god Atlas. Oh sure, lying down would be a far better choice, but I have too much to do and not much time to do it.

The stove top is clogged and not covered by warranty because a cooler leaked over the top. Customer error. My own father once told me I should take a mechanical aptitude test. He wanted to see how low a score I would get. Even so, I investigate solutions through Google. And hope the results don’t lead to even more expensive repair.

I need this research time for another task: preparation for a writers’ workshop. Charm only gets a writer so far. I want to have some work completed—in something better than back-of-an-envelope form.

The battle is on. No weapons, only wits, and mine belong somewhere at the lowest ebb of my throbbing pain. I miraculously manage to get the gas burners to light. The nub on a Samsung doesn’t look like the one on a GE stove, but I clean it with a stripped bread tie. The rest of the stove also gets a scrubbing with a combination of hydrogen peroxide and baking soda.

For me seeing the flames rise in a perfect blue circle is equivalent to a toddler discovering a new chemical compound. Nothing short of miraculous.

Long before I am ready to leave for my conference I need to babysit for my youngest grandchild. I will leave about noon and she will bond with Grandpa.

Ella and I play. She creates an imaginary world and I follow her lead. Adventure at its best. The bean bag stays out of sight for a while. Not long enough, but for a while.

Uh, Ella, can you give me your secret? A touch of your adventure?

So we take turns leading Dora the Explorer and Diego down a plastic slide. This moment. Not the future, not the past.

The conference will present itself as an adventure. And it does. No time for pain…

Finally, several days after the dust settles so do the headaches. I find a new definition for gratitude.

dear stress

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Riding the Storm, Playroom-Style

Posted in positive thinking, Uncategorized, tagged , , , , , , , , , , , , , , , , , , , on June 26, 2015| 2 Comments »

Isn’t it strange how life won’t flow, like a river, but moves in jumps, as if it were held back by locks that are opened now and then to let it jump forward in a kind of flood? (from “Clear Light of Day”  (Anita Desai)

I watch Ella as she lives fully in the moment. Mickey Mouse, Dora the Explorer, and a miniature My Little Pony take turns going down a plastic slide. Grandma joins the adventures. Reality adjusts to fit the scene. However, Grandma sees the dust as the sun streams in from the window, the mess that needs to be cleaned later, and an agenda that won’t fit into twenty-four hours. Ella recognizes play and infinite possibilities.

Breathe in for a count of five; breathe out for a count of ten, I tell myself. Yes, I am capable of imagination. “The Curse Under the Freckles,” coming out in early August, is a middle-grade fantasy novel. However, transferring that experience from a controlled page into everyday life is another matter. I need the example of a child, the vision of a little girl who can have open-heart surgery and then, less than a week later, return to her toys as if no time had lapsed at all.

Right now I am praying—a lot—for friends and family facing huge challenges. One has a cyst on her brain; the other is in the hospital with Crohn’s disease. And, of course I always think about my companion with stage-four breast cancer. Several years ago I thought I had gall bladder problems. I wasn’t even close. There was a blood clot in the lower portion of my lung, a pulmonary embolism. The predisposition is hereditary.

I took far longer to recover than my granddaughter did. I was focused on Desai’s metaphorical current and Ella lives its river, locks, jumps, and all. Oh, she fought harder than I did! She hollered, “No,” every step of the way, but she was thoroughly present.

I pick up an old Ronald-McDonald-in-a-plane toy and fly it upside down. “Hey, turn this thing around, will you, Mawmaw?” I say. “I’m going to fall out!”

Ella laughs. Maybe I’m learning.

slide

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The Fantasy Nap

Posted in Uncategorized, tagged , , , , , , , , , , , , , , , , , , , , , , on May 20, 2015| 5 Comments »

Health is the greatest gift, contentment the greatest wealth, faithfulness the best relationship. (Buddha) 

Ella’s daddy wants her to have a nap today. The stitches on her chest became infected. They had to be surgically repaired last week. She needs to catch up on her sleep and recover. Ella, however, has a different plan. I lie down next to her because we don’t have a bed for her. Napping at our house is not part of time-with-grandparents routine.

I had told her it was time to sleep and she told me it wasn’t dark out.

“Nap, Ella, not nighttime.”

She grins. I know what tactic she is forming so I open the book we just got from the library and begin to read. She decides she wants to tell the story.

This is a ploy, but I want to hear her version. She flips the pages back and forth and makes faces at me. Yep, I was right. Our granddaughter wants me to laugh, actually outright giggle. This will stop the possibility of sleep in the middle of a perfectly good day for play.

Oh, why was I made out of malleable wet sand when it comes to my grandchildren? I try to keep my lips set into a serious straight line, something like holding back the water from a burst pipe with a paper bag.

“Okay, sleep time,” I say.

“Night, night, Mawmaw,” Ella says, at least a hundred times—in different tones. “I love you,” she finally says.

“I love you, too,” I respond.

Then she makes a tent of the book over my face. I finally laugh. She has won. She giggles and I want to hug her forever.

You are ornery and sneaky, little girl, I think. But I wouldn’t change anything about you—even if I could.

“Uh, the nap was a bust,” I tell my husband and see disappointment in his face. We didn’t follow instructions. Okay, I didn’t follow directions. But they required willingness from another participant who didn’t want to miss one minute of the day.

I am so glad Ella’s heart is now working properly. Her spirit has always shone, even with a blocked valve, and her ability to find contentment in the simple inspires me.

Chances are I won’t seek employment as chief disciplinarian anywhere. This story wouldn’t fit well in the resume. But the position of Grandma, also known as Mawmaw, works just fine for now.

Actually, I feel somewhat honored.

listen to your heart

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A Glimpse of a Scar

Posted in Uncategorized, tagged , , , , , , , , , , , , , , , , , , , , , , , , , , on May 14, 2015| 2 Comments »

Happiness is holding someone in your arms and knowing you hold the whole world. (Orhan Pamuk)

Recent talk among several groups of friends has centered on gratitude. I don’t take it as a coincidence. Ella grins at me as she watches several versions of “five little monkeys jumping on the bed” on YouTube. “Oh dear,” she says as each one falls. Falling is forbidden for her at the moment. The stitches in her chest are deep; they will heal from the inside-out and that will take time. The best recovery in a lot of areas begins as an inside job. I put my arm around her and know I hold the whole world.

Small details jump out at me: the pink edging around her shoes, the smallness of her body and hands, the sunshine white-blond of her comb-resistant hair, even the yogurt stains on her jeans.

Her seven-year-old cousin arrives and without a word Ella lifts her t-shirt and shows Rebe her scar. No whimpering. This is a statement of fact. Rebe looks at me, her eyebrows raised, but she doesn’t speak either. She gives Ella a kiss on the cheek. The children seem to know this is answer enough.

Play continues. Pretend games, a mock form of hide-and-seek, i Pad entertainment. Lots of giggles. Running, monitored and limited in a small house.

My memory goes back to a time when I was in water aerobics class. The news had been fresh that our youngest granddaughter would have Down syndrome, an A/V canal defect and duodenal atresia. At that moment we saw our granddaughter as someone who had not yet been born. So far all we knew were problems, unseen and vague roadblocks, the kind that lead many women toward abortion. Ella had not yet seen her parents’ faces and no one had seen hers.

I recall following aerobic moves as a song played in the background. It was only a rhythmic drum beat. I was seeing the rest room doors behind the instructor, not the instructor. I knew our granddaughter would be a girl—that was all. And the rest of what I understood was surrounded with fear. I wanted to know more than the skirted figure on the door of the restroom could tell, and I didn’t want to know.

Now I look into Ella’s eyes and see sapphire blue, a hint of humor, a ton of strength, and a spirit the angels could emulate. Yes, our little girl has been through more surgery in her short life than I have in my almost 69 years. Yet, she accepts the next day as another experience, not the morning after.

“May I sit next to you, Ella?” I ask.

She smiles. A lot of words aren’t always necessary. Sometimes they get in the way of a simple message. Love loses its beauty when it is over-defined.

learning to be brave and patient

 

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An Open-Heart Kind of Girl

Posted in Uncategorized, tagged , , , , , , , , , , , , , , , , , , , on April 27, 2015| 6 Comments »

The world breaks everyone, and afterward, many are strong at the broken places. (Ernest Hemingway)

My husband and I are at the checkout counter at Trader Joe’s. No one is behind us in line. The girl at the register asks us about our day and Jay tells her we are going to visit our granddaughter in the coronary care unit.

The girl at the checkout pauses, and then gets the attention of a fellow employee who gives us a bouquet of flowers for Ella. I doubt that our little one can have flowers in her room yet, but the gesture takes me by surprise. I hope that a few controlled tears represent sufficient gratitude. Kudos to Trader Joe’s for the personal touch.

Jay found a package of somewhat-natural sweets for Ella. We expect her to respond more to taste than sight at the moment, but her parents should appreciate the kindness of multicolored flowers. No kindness is wasted.

My son sent a picture of our girl with her big, bright eyes glowing. Her hands are tied down to various lines. Nevertheless, she opens her mouth for fruit. Ella is a survivor. We count on that.

When we arrive in her room Ella fights sleep. She doesn’t want to miss anything—except perhaps the next poke or prod. She is sans oxygen now, however. Her ventilator came out earlier. Her open heart surgery was 24-hours ago. She is progressing ahead of schedule.

I think about the start Ella had in life: born seven weeks early with a birth weight of three pounds three ounces, duodenal atresia, and an AV Canal heart defect. Yet the nurses fought about who would care for her each day.

She has grown to be an active, enthusiastic five-year-old girl.

As I watch her I worry that this time her spark will burn out. Then I realize I am looking at my fears, not hers. Ella uses her tripled chromosome as a lever for caring. She doesn’t allow ego to get in her way. She isn’t competing with anyone for first place—in anything.

Two days ago she wanted to push me on the swing at a local park. She insisted, and I let her do it.

“Want to go higher, Mawmaw?”

“Yes!”

But I kept the toe of my shoe on the ground so that the swing didn’t come back to hit her. The surgeon needed to break through her chest—with skill—not through a clumsy accident. I knew what she would be facing. She didn’t. But somehow she intuited it was time to put on extra charm, keep the grandparents at ease. The trial hadn’t come; we had not arrived at the huge medical bridge that needed to be crossed. Yet.

The cut flowers won’t last. They never do. The store’s gesture remains as a ripple of kindness I need to pass along. The broken places in a person become opportunities—to remain severed or to become something new, something better.

Ella’s surgery was on Thursday. By Sunday she has left behind the ventilator, oxygen, and the lines that connect her to a bed. She stands. She will be running soon. Tylenol or ibuprofen controls her pain. I can’t imagine an adult bouncing back that quickly. Ella doesn’t know misery can be extended by choice.

She isn’t ready to push me on any swings yet. But I can’t imagine that it will take long.

Ella at Mt. Airy Park04242015_0000

 

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A Child’s Wish: “I Hope You Never Git Hert”

Posted in Uncategorized, tagged , , , , , , , , , , , , , , , , , , , , , , , , on April 14, 2015| 2 Comments »

Life isn’t about getting and having, it’s about giving and being. (Kevin Kruse)

 As I’m dusting the windowsill I see the note Kate wrote to Ella, probably several years ago. I saved it because it reflects who Kate is. Ordinarily I choose to publish only quotes and pictures that include correct spelling and grammar. However, there are times when perfection can ruin the beauty of the moment. The sincerity of my eldest granddaughter’s wish blasts out from her innocence. She wants the best for her young cousin. I can’t fault that.

However, no one experiences a perfect life. Our Ella probably understands that better than many people do. She approaches a quarantine time. Her open heart surgery has been postponed twice. Now, so that she can move forward, we must keep her away from crowds and lots of germs. Of course she has no fear of infection. Saturday she dropped a vending machine M&M on a restaurant floor and then picked up the candy and chomped on it. Fear of another sick day does not govern her life.

I would like to delete fear from my own life. I would also like to send a message like Kate’s to a few other folk I know, to wish safety, health, and simple joys.

There is a young woman at a place I visit frequently who has recently had a recurrence of cancer. She is frightened, as anyone would be. She says she does not expect to recover this time.

She shows me the site from her biopsy, just below her throat. We share a few tears. I hug her. This is all I have to give. She says six words that scream a lifetime of experience: “I have always been the oddball.”

We are standing in front of a public bathroom mirror. I want to turn her toward the glass and point out what I see—a beauty that isn’t superficial. Tenacity and willingness to serve don’t appear in a flat reflection. Yet, I can’t find an opening in her spirit to explain that different is not a synonym for inferior. She is devastated, too broken for words to seep in yet.

I recall how I was the taunted kid through twelve grades of school. And I never understood why, except for the innate inferiority theory. After all, my parents never told me that I had gifts of any value.

This young woman has struggled through developmental handicaps. She has gone through chemotherapy. She volunteers. Daily. With a smile. She is in too much pain to understand more than a hug. Moreover, my recent accomplishments can obscure the realities of the past. She doesn’t see a future. Now is not the time for me to talk, but to listen.

Then I see her again this morning. She wears a pink fighting-breast-cancer scarf. She readily accepts my embrace and tells me she is taking her driving test on Tuesday. I grin. She talks about her nervousness. I think about facing tons of steel on the road. I envision this young lady approaching a 32-wheeler on the expressway and crushing cancer in the passing lane.

Perhaps enough people have listened to this volunteer. Maybe she is beginning to see her own worth, prayer answered before it was barely begun…

May that power continue to grow.

 

Dear Ella

 

 

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