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Posts Tagged ‘grandchildren’

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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To find someone who will love you for no reason, and to shower that person with reasons, that is the ultimate happiness. (Robert Brault)

Several years ago Jay and I were at the Y kiddie pool with Ella when the children from the special-needs class had their outdoor time.

“Ella looks like she could be Payton’s little sister,” one of the teachers commented.

The resemblance was amazing: blonde, blue-eyed girls, both with loveable auras. I found myself watching Ella’s look-alike and telling her she was incredible, but not to drink the pool water. A grandmother’s kind of response.

Recently I met the beautiful lady who calls herself Payton’s sister. She isn’t. Sisters aren’t always this close. Bethany has babysat for Payton since she was considered legally old enough to be a responsible child. Their meeting was a coincidence, or as one of my friends calls it, a God-incidence.

Bethany’s mother delivered frozen food to people who had difficulty picking it up. She knew Payton’s family because she had worked as an assistant at her school, but had been laid off during a financial cutback. Bethany had just happened to be tagging along when her mother made the delivery.  Bethany’s mother treated each child in the school as a valuable individual. Therefore, Bethany learned respect for all persons naturally.  Three-year-old Payton could easily reach her with the beauty of her spirit. A relationship developed.

Bethany could love Payton for no reason and shower her with reasons.

Payton does not speak. When she was six years old she was tested for autism. She has both autism and Down syndrome. These limitations do not stop her from being a good friend and an A-plus example of unconditional love.

Bethany has chosen to act as Payton’s legal guardian. Will this be difficult at times? Maybe, maybe not. No worthwhile choice is without risk.

Recently I spoke to someone who doesn’t know Ella. I told her about our granddaughter’s open heart surgery. The woman nodded, with me until I mentioned Down syndrome. Then came the stepped-back oh-I’m-sorry look. Neither Ella nor Payton are their tripled chromosome any more than my essence is summed up in my height, weight, or allergic status.

Meet Bethany and Payton. And find blessings.

collage made by Bethany in honor of National Down Syndrome Day

Bethany and Payton collage

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Fiction is art and art is the triumph over chaos… to celebrate a world that lies spread out around us like a bewildering and stupendous dream. (John Cheever)

My husband asks me where I would like to go on vacation.

“I have fond memories of Michigan,” I answer. “We went there when I was in grade school.”

He decides on Ontario, but knows I won’t complain. Vacation decisions are in his corner. Not only can’t I read a map that leads to our local grocery store, world exploration isn’t on my radar. Sure I had a fantastic time in Norway and Bavaria. I have a fantastic time walking in the woods, entertaining friends and family, or singing karaoke, even though I’m a soprano and the crowd is made up of half-drunk folk who would rather hear Willie Nelson. Okay, I’m not crazy about being around the inebriated. Change that scene to a senior center filled with the hearing impaired.

I am peculiar and know it. Capturing the world by visiting each place isn’t as important to me as capturing the words that explain the world. I write regularly for Piker Press. Three of my poems will appear in FOR A BETTER WORLD 2015. I have been involved with their mission for the past five years. My first novel, a middle-grade fantasy, should come out before school starts. It is being published through Post Mortem Press, a small but mighty independent publisher. The press specializes in horror, but has branches that include other works such as cozy mysteries by Patricia Gligor. Her fourth book, “Mistaken Identity,” will be coming out in about two weeks. Pat and I are in the same critique group; she is an excellent resource and a superb writer.

I will be talking more about my chapter book later.

For now I simply want to say that everyone floats a different boat. And that is okay. Sometimes, as I drive I wonder how to describe what I see—from diverse points of view. How would this roadway look to someone with a serious illness? To a man on his way to settle an important deal, or lost? I can wake up at two in the morning and be aware of a story notion before I notice that my bladder is overfull. Peculiar is probably not an adequate description. And yes, if you want to feel sorry for my husband, I understand.

“Sweetheart, I recorded a show you will really like,” he says.” Josh Groban should be on any second.”

“Okay,” I answer. “I just need to write one more line.” Always just one more line.

Who knows? Maybe one of these days I will follow every word when he explains a sports play. Stranger things have happened. He and my sons were my mentors in the first portion of my chapter book. Thanks, guys.

What makes you wake up and feel more alive?

weird writers from screenwriting u

 

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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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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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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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It is a wonderful seasoning of all enjoyments to think of those we love. (Molière)

In my last blog, “Bye Bye, Old Stove; Hello Possibilities,” I took a picture of a turkey in the early stage of baking. Most of that turkey has been sliced and frozen; my husband and I don’t require Sumo-wrestler portions. However, that bird will probably be only a memory in a matter of hours. I expected four guests for dinner. That number has now increased to eight.

Jay has made a quick run to the grocery store for more fresh fruit and vegetables. We plan to feast and celebrate the beauty of family.

As Jay and I peel and slice potatoes into my largest pot I think about my guests and gather positive thoughts about each individual—what could also be considered prayer. This attitude helps because my stove may be new, but it has limited space, not enough burners for everything I want to prepare.

I actually pause and consider options when panic would be my usual response. (Ask Jay. He has seen me in full-blown impending-disaster mode. I believe in positive attitude, but need to work at it, just like everyone else does.) However, this appliance and I are getting to know one another as friends. Stove is young with modern possibilities. My experience is old and varied. I’ve made enough mistakes to know what doesn’t work. Together we should be able to work out the logistics with the help of the microwave and the warm setting on the oven.

Then chaos reigns when I try to maneuver pans, bowls, plates, and hot stuff into a dining area the size of the average department-store dressing room stall. Granddaughter Kate helps—in between reading pages of her current book and attending to cousin Ella, sister Rebe, and new friend Dakota.

“What more do you want me to do, Grandma?” she asks. “After all, you do so much for us.”

I savor this moment as I watch her decide what color plastic forks the younger kids would like. This time isn’t really about food anyway. Mashed potatoes and even homemade brownies are only part of this day. In the future will anyone remember the menu anyway? Probably not. I’m hoping they will recall the laughter and the fun.

And that gives me the energy to provide the setting, in my job as chief cook and Grandmother.

Kate tells me that almost-four-year-old Dakota said that he was going to drive a garbage truck when he grows up. But it will hold marshmallows. Dakota is a very neat child, so I suspect this will be a very clean disposal vehicle. Perhaps this young man will help to clean-up a very nasty world and fill it with softness. He just doesn’t know it yet. I can’t see inside anyone’s mind, but his smile shows high-beam possibilities.

After dinner my daughter-in-law Sarah clears the table and fits the leftovers into suitable containers. I watch her efficiency and think about her amazing ability with mechanical devices. She had my new Cuisinart assembled in seconds, and she showed me how to use it in terms I could understand. Given my lack of understanding, that is quite a feat. And she did it without making me appear amazingly inadequate. Anything that needs assembly has never been my forte.

This house is really too small to hold three children and seven adults. But WE did it. I’m tempted to relay all of my family’s virtues here. Now. But, an overview is sufficient. More becomes like a grocery list.

This moment is a gift…And I celebrate it.

doing the little things Words of Wisdom

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Happiness is a butterfly, which when pursued, is always just beyond your grasp, but which, if you will sit down quietly, may alight upon you. (Nathaniel Hawthorne)

Ella pulls toys from the shelf. She hands me a soft baby doll and then takes picture flash cards out of the box. She holds up the cards for the doll to learn the words. I provide the voice for the toy.

An hour ago our granddaughter had a fever. She kept my iPad close to her but she didn’t seem to be able to focus. No video or game could take away her discomfort. One dose of children’s acetaminophen brings her back to play, to smiles, to an interest in her favorite foods.

I want my precious girl to be well now. I can’t yank infection from her system with wishes. Antipyretics are temporary. She sees the doctor today. My husband and I wait for those moments of shared happiness, that grin that says: I’m a fighter. Down syndrome hasn’t thrown me. An illness won’t either.

Not that she could say that with grownup words. Ella has her difficult moments, but her version of a crabby day isn’t easily noticed because it doesn’t resemble another child’s I-want-it-my-way tantrum. She doesn’t demand. Her first words when she arrived at the house this morning were, “I’m sick.” Yet, poor-me isn’t in her, and her statement did not appear with a pout or whine. She mentioned it as fact.

Now as her temperature eases down toward normal, her natural happiness reappears and her ability to capture joy alights upon me. It settles into my being, at least for a while.

On most days I have a difficult time sitting still to watch more than one television show, even if the program happens to be riveting. My agenda calls me to write, clean, do laundry—even scrub a toilet. Yet, I can sit next to my granddaughter for hours while my neurotic need for action remains on hold.

Her small frame lies curled in my lap and I massage her back with as light a touch as I can manage. The fever has returned. She turns toward me and smiles. The butterfly has landed, and I don’t want it to fly away. Ever.

***

Ella’s mommy calls after Ella’s appointment. She has a virus and a sinus infection. Nothing dire. I am grateful…I am grateful…I am grateful…

Photo by photographer, Sue Wilke

butterfly on green background, Sue Wilke

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When you arise in the morning, think of what a precious privilege it is to be alive—to breathe, to think, to enjoy, to love. (Marcus Aurelius)

I am treading water at the Y on an ordinary Sunday afternoon. I feel amazingly free in the deep end of the pool as I kick and move my arms through the tepid water. There are not many people here today, so I swim back and forth with no direction planned, no agenda, only the idea that this hour or so belongs to me, my husband Jay, and the generosity of the water.

A woman arrives. She leans against the wall. We smile at one another. Within minutes we are talking. She shows me an exercise that is good for back pain. She tucks water weights under her arms and then relaxes, torso straight, legs dangled in the water. She has had serious back surgery—and has been recovering for months.

However, I don’t realize how intense her situation has been until after we have been chatting for a while. She had pain all over her body. The cause had not been easily diagnosed. She had a congenital condition; she was missing a portion of bone, discs, in her back. That section has been rebuilt, a beyond-major task. Yet, pain has not left her life. It remains. She has not succumbed to relying on heavy medications. She keeps going without feeling sorry for herself.

When I think I have been sufficiently impressed she gives me more to absorb. Her grandson, Jonathan, was born with half of a heart. He was not expected to survive. He has had three cardiac surgeries and is now five-years-old. For him to have survived this long has been a miracle. With incredible calm she says that he will eventually need a heart transplant, but that his chances of survival will be greater when he is older.

“If he can make it, so can I,” she says.

I watch and listen so closely I wonder if I have blinked. My youngest granddaughter is scheduled for open heart surgery at the end of April. This woman’s words and attitude travel through the water and give me more than hope. They bring peace. Worry is counterproductive. Gratitude yields more gratitude tinged with joy.

“So, what is your name?” I ask.

“Sue.”

I can remember that one.

She claims to be an ordinary person. In fact, in an e-mail I receive from her later, everyday-woman seems to be her theme. She has three children and five grandchildren. She emphasizes gratitude and offers prayers for folk who suffer greater losses.

We are all both ordinary and unique, flawed, gifted, and human. To think anyone is superior is delusional. I believe that how we approach each day makes the difference. And no one can judge whether an individual is great or not. Even if one moment brings a person success, the next stress offers the chance to grow or to break—as long as the life-game continues.

Night makes day brighter. Winter makes spring sweeter.

Here’s to the privilege of being alive! Cheers. I lift a glass of water, but the beverage isn’t what matters. It’s the attitude of peace that does.

Thanks, Sue! See you at the Y.

not giving up story not over

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The key to everything is patience. You get the chicken by hatching the egg, not by smashing it. (Arnold Glasow)

My husband and I are sitting in a customer service office in our bank. Jay says that we are trying to get some financial business started early because he will be out of town for a few days. His mother is ill, in hospice. He is going to visit her. The bank’s representative listens and understands what he is trying to do.

Jay adds that our youngest granddaughter was supposed to have open heart surgery at the end of this month. That was postponed. Our little one contracted bronchitis. She will be at too high a risk for complications to proceed with the operation now.

The bank representative pauses and then asks, “Is it okay if I pray for your mother and granddaughter?”

I’m surprised, taken aback in a pleasant way.

“Of course,” I answer, tears in check. “We’ll take all the positive energy we can get.”

Our entire family and Ella’s many friends wait with reluctance for Ella’s surgery because we want the ordeal to be completed. Done. Part of a long-ago past. We want results now. Preferably yesterday. Ella’s power is awesome to watch. At the age of five she has admirers of all ages. Down syndrome may prevent her from developing an over-sized ego. It does not prevent her from spreading joy. She needs a membrane removed that is interfering with the function of her physical heart. Her social heart is intact.

My mother-in-law’s family and friends wait for her passing and hold onto the memories of all she has given as well as celebrate all she is and was: Mary, the strong outspoken woman who was director of social services at a now-closed psychiatric hospital; the social activist; the woman who took people into her home and gave free counseling; the grandmother who bonded with my boys while I worked at a hospital pharmacy.

She will be 95 on February 28 ½ if she rallies. Yes, she was a leap-year baby who learned to turn elongated celebration into an art form.

I talk to her on the phone and she thanks me for the soup I sent.

“You made this?” she asks. “What’s in it?”

“It comes from boiled turkey bones with some extra chicken broth. Plenty of garlic. Rice. Glad you like it.” I don’t go into detail about all of the ingredients. They don’t matter. This isn’t a how-to discussion.

I give soup to heal. In this case it would take more than broth-simmered-all-day to repair a body too worn to journey any longer. I sent the soup for taste and warmth, a hug in a mug. True, chicken soup does provide electrolytes as well as the protein, carnosine. Homemade soup is a potent liquid. But it won’t add a significant number of days to my mother-in-law’s life.

Waiting—for a passing and for a surgery. Very few people win patience awards. And no one can see inside the fertilized egg for tomorrow’s possibilities. Even the chicken doesn’t know what the outside world looks like.

I don’t drink alcohol, so I lift my coffee cup for a toast to today, to whatever blessings it brings. To hope, serendipity, rain, rainbows, and the unseen. Since waiting is inevitable, may it be blessed.

dove and rainbow PIQ

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