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Posts Tagged ‘Down syndrome’

Ella’s Intuition: How Does She Know?

Posted in positive thinking, tagged , , , , , , , , , , , , , , , , , on July 19, 2017| Leave a Comment »

The most beautiful thing we can experience is the mysterious. (Albert Einstein)

Ella leads our play and I follow: trick or treat, hide and seek, happy birthday in multiple forms—bunny’s fifth birthday and mine. Ella plays the role of Daddy; I am Daughter. I ask how old I am today. The reply? Seventy. In the make-believe world, the next obvious question has an unknown answer. It doesn’t matter.

While my spirit keeps up with the imagination of my granddaughter, my bones don’t. My lower back aches. But, I don’t tell Ella. Later, when her daddy and Grandpa come back from their errands I will put heat on the complaining area. For now, I will move a tad slower.

Then, I notice the microwave announcing my food is ready. I didn’t put anything in it. My bed buddy is warm.

Ella admits she did it. She shows me how she placed the fabric-covered bag of rice inside and hit Express. “For your back.”

How did she know? And get this warmed for me so quickly? During hide and seek?

Ella goes to the toy room and grabs the box of bandages. She places a strip inches from the most annoying area. Comforting heat relieves the discomfort in my back. I sit leaned against the chalkboard on the floor in the room with the toys as we play.

“You are amazing, Ella. How did you know my back hurt?”

“And your throat, too.”

My hiatal hernia has enlarged and burned the inside of my throat. Not a problem I would share with a child of any age.

Ella’s Down syndrome may have affected her muscle tone and other areas of her development. However, she has been reading phonetically for several years. Her intuition is beyond exceptional. She is a blessing in my life.

I’m not sure she knows how to explain how she understands what most people of any age would never recognize. To me, the answer is a mystery. For her, she is simply being Ella.

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Love Wrapped in a Plastic Bandage

Posted in positive thinking, tagged , , , , , , , , , , , , on July 2, 2017| Leave a Comment »

The world may think you are only one person. But to one person, you may be their world. (Author Unknown)

My recovering fractured right hand failed as I was browning chicken to oven fry. I dropped the meat into oil and splattered searing hot drops onto my left wrist. Ella sees the gauzed area and wants to make it better. Now. My skin is red, with a few ready-to-pop blisters. I keep the injury covered because I don’t want my granddaughter to see it. And worry.

I turn the situation into play and call on Ella as a pretend Doc McStuffins, the Disney character. Since I have a box of miscellaneous bandages that have the lasting adhesive power of glue left uncapped for at least a year, I don’t mind if Ella uses them.

“Don’t look,” she says as she gets a slightly twisted bandage ready. She gives me an invisible shot. And I promise her I’m not going to cry.

Within minutes I have plastic strips on my hands, arms, and legs. Doc Ella McStuffins is thorough. She wraps her healing around the wrist of a small doll.

“One more thing,” she announces.  She presses the last strip in place on my arm. Then, she kisses the final bandaged surface.

My playroom rug holds a mound of empty bandage wrappers. Ella’s heart, however, is far from empty. I am blessed to be inside it. She is inside mine as well.

 

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More than Coincidence: Ella and a Chance Meeting

Posted in positive thinking, tagged , , , , , , , , , , , , , on June 26, 2017| Leave a Comment »

Coincidence is God’s way of remaining anonymous. (Albert Einstein)

Ella is excited. We are meeting her daddy for lunch. Even in play she lowers her voice as she goes off to an imaginary workplace. She is the daddy. He is her introduction to words—she has been reading for several years now. He is her fun. Daddy makes her laugh and lets her know she is important, no matter how many challenges she needs to overcome. 

Two uncles are joining us. An all-around special day. The uncles have taken a wrong turn and need directions, so Daddy steps outside to help them by phone. Ella sees a man, alone, waiting for a table.

“Hi,” she says, and within minutes the man has a friend.

The talk seems general at first, as Ella chats about Daddy, chicken and fries, and games. I join in, obviously pleased with my granddaughter. Then the man shows us a picture on his phone of his twenty-five-year-old son.

Like our granddaughter, he has Down syndrome.

I ask about him and get a mini version of his journey, yet never learn either of their names. They are gifts Ella found—or intuited. I don’t know. I’d like to learn more, gather father and son as friends, treasures. Instead the moment becomes a single valuable pearl to savor and remember.

Sometimes higher ranked gifts come wrapped in an innocent hello, meant to be passed on—as far as possible, into the lives of other people.

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Two Playmates: Ages Seven and Seventy

Posted in positive thinking, tagged , , , , , , , , , , , , , , on March 12, 2017| 2 Comments »

The greatest happiness of life is the conviction that we are loved—loved for ourselves, or rather, loved in spite of ourselves. (Victor Hugo)

Ella has scarcely removed her coat when she runs to a shoe box full of small toys. A special Friday. A day off school. Time to play.

She grabs the plastic slide and the character, Diego. I know she will want Dora the Explorer next, so I reach for the figure closer to the same size. (We have several Doras in the box.) Ella chooses the slightly larger figure.

Size is not significant in the world of make-believe. I forget. Play is my granddaughter’s realm. She makes most of the choices here. She needs to yield to the adult world often enough. In make-believe, she has more experience.

We take turns leading the figures down the slide: on their bellies, head first, up the wrong way, and one friend giving the other a gentle nudge to move faster. Then Ella decides head first means vertical, with feet facing up. She laughs.

She is a child, but she lives in the real world, too. She is aware of the attitudes others have toward her whether she can verbally express what she knows or not. Talking about her struggles in her presence, is unfair. Even cruel.

Yes, Ella has Down syndrome. She needs to work harder in some areas. However, she has been reading for several years—sounding out words, not simply memorizing them. Ella has a sense of humor.

“Look!” she says. She turns Diego’s head around.

“Are you doing that again?” I say for Dora. Then I turn Dora’s head around. “But, you do it so much better, Diego.”

Ella howls with laughter.

I suggest placing the two figures on the back of a plush ladybug. “Let’s fly.” Our fantasy world continues.

That’s how I know I’ve been completely accepted into her imaginative space. I consider it a promotion.

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When You Are Lucky Enough to Have Good Family

Posted in positive thinking, tagged , , , , , , , , , on September 27, 2016| 3 Comments »

Having a place to go—is a home. Having someone to love—is a family. Having both—is a blessing. (Donna Hedges)

A group of eight friends gathers. Our purpose is spiritual; we share our lives as they are, not as we want them to be. S has thirteen children, now grown. At one time she took in a boy who had been abused. S’s family was suburban white with Cherokee ancestry; the little boy was dark as sweet milk chocolate. When a family picture was taken the boy slipped in with the rest of the village-sized group.

However, when friends and extended family saw the photo they raised their eyebrows. “Uh, something we don’t know?” The children saw him as part of the family. The boy hugged S, and called her Mom. His temporary siblings realized how little his skin color mattered. The boy did matter.

In fact, when the time came for the child to move on six years later, S. had tears running down her face. A part of her left with him.

My husband lies in a hospital bed. He is improving, with the progress expected of a patient who has been in bed for a week and a half after surgery. Discharge date could be soon. Maybe not. No way out of walking through the fearful places.

“I live here,” I say to the cafeteria staff when they notice I’ve become a regular. It’s easier to get a sympathetic smile, and then go on.

This experience can’t be explained in a few words anyway. Sure, the doctor and staff can talk about how digestion works, and how long it takes for the body to function again. The experts can’t predict how human spirits will act and interact. Hope comes through other people.

And friends and family have appeared like sun drying flooded waters.

Finally, a chance to breathe arrives. A trip to dinner—my meal is paid. Movie and ice cream—my wallet remains closed. And my sons decide I could use a little time with my grandkids. They are right on!

We go to a local restaurant. A blackboard covers one wall in the back corner. My three girls pretend to be teachers. I am the only pupil. The two older kids take turns. Ella fills the board with dainty designs that become one mass of lines; she covers herself with chalk dust. When I ask her a question she uses the appropriate teacher face. And I know I am honored to be here as Grandma, the student.

I think about S and her family. I don’t know them. I’ve never met the young boy who is certainly a man by now. But, I know that the gifts of things haven’t made the deepest impressions in my life. The present of presence? It makes all the difference in the world.

struggle part of the story

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Forever a Student, Forever Learning

Posted in positive thinking, tagged , , , , , , , , , , , , , on September 13, 2016| 1 Comment »

Every student needs someone who says, simply, “You mean something. You count.” (Tony Kushner)

I am in a familiar place and ready to exercise—at least to the degree I can right now. My muscles feel somewhat stretched, relaxed. Few people are here today. The weather probably has something to do with it. Mother Nature is having violent, adolescent mood swings. One moment hot, the next stormy, followed by cold.

Then I hear the ubiquitous political discussion begin. A woman responds with a rant about how the world is ready to self-destruct. Our streets aren’t safe. Neither presidential candidate has worth. We shouldn’t bother populating the world. Our children don’t have a chance…

I sigh and move away. But, even though I’m not wearing my hearing aids, her voice penetrates the air and everything else. An idea comes to me; I decide to pursue it. I introduce myself to the lady. “

True,” I begin. “A lot of bad stuff is out there. But I know some great kids. And they have made at least a few corners of the world better.” I tell her about Kate and how the kids in her class who have autism come to her for encouragement. And friendship. I mention our youngest granddaughter, Ella, who has Down syndrome, but has brought many members of the family up, in one way or another. Only four persons noticed I had new glasses; Ella was one of them. She is both aware and loving.

The woman comes closer to me. Closer than our culture usually finds acceptable until we know someone well. Yet, it seems okay. Even more than okay. Because, she tells me about a member of her family who had Down syndrome and died in her sixties. That person was an important part of her life.

And I let her know how important she was as a caretaker. She agrees that her relative saw and understood more than people knew she did. I see a new glow in my comrade’s eyes. Her nearness no longer feels as if it is trespassing inside my personal space.

Somehow I doubt this woman sees life with any less cynicism. But, perhaps, just perhaps, a seed of possibility has been planted. She did some good making the world a better place for her relative; maybe there are young people today doing the same thing.  

Later I tell my granddaughter she helped someone without even being there. She smiles. True, a student is generally considered a young school-aged individual. But, Kate shows me new apps for my iPad. She creates a collage of photos from a family birthday party within seconds. “And these are all free.” Twelve-year-old Kate teaches seventy-year-old Grandma.

I don’t plan to give up student status for a long time. The teacher’s age doesn’t matter. The relationship does. And so does gratitude. you-matter-you-hear-me

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Seeing Through Dilated Eyes: Past and Present

Posted in positive thinking, tagged , , , , , , , , , , , , , , , on August 16, 2016| 2 Comments »

Intuition is seeing with the soul. (Dean Koontz )

As Jay drives to my ophthalmologist I sit in the backseat next to my granddaughter, Ella. Headlights from oncoming cars mildly bother me even though it’s daytime. Morning. No glare from dark to light contrasts. And discomfort from dilating drops hasn’t happened yet.

I am certain I need new glasses even though I got a stronger prescription last year. But am I a candidate for cataract surgery? Don’t know. Yet. Besides, the hot, polluted Midwestern air teases my lungs, constricted by asthma.

I sit next to Ella. By choice. At six she is old enough to entertain herself. We play games together. I look at a bright Ella instead of an outside sky I’m not ready to face even with sunglasses.

“Name an animal,” she says.

Mickey Mouse is also playing. I hold the toy and act as proxy. “Mouse,” Mickey answers.

Ella nixes that response. Mickey is a mouse. He needs to think outside his own species. At least I gather that from her head shake. And I smile.

“Monkey.”

Better.

She adds, “Moose.”

At the office Ella sits so close to me I have difficulty filling out the paperwork. She glides her hand down my arm and sticks her head into mine. “You be okay.”

I’m grateful Grandpa is taking her to the park. My sweet granddaughter doesn’t need to sit and recall her own surgeries. Including open heart. Twice. Although she couldn’t recall the first. She hadn’t been six-months old yet.

Ella's last day at Children's Hospital

“Fine. I will be just fine.” I bring my fill-in-the-blanks sheet back with me. Down the hall. Not far. But, my memory slips back to a day before Ella learned to walk. To the first time I realized Ella could connect with my spirit in an unexplained way.

I was sitting on the floor as she crawled across the floor. My husband was watching The Girl with the Dragon Tattoo. He saw fiction. I saw a scene. A girl who could not escape. And I heard her scream. A waste of breath. The sound reached into my gut and ripped out my own memories… a moment that had been bad enough. The degradation afterward worse. I gasped.

My granddaughter could not have understood what I saw. Or remembered. Or felt. But, she climbed onto my knee and interrupted the scene, her eyes wide. She did not have language yet. Nevertheless, her face said, Look at me, not at the television.

At that moment I lifted Ella into my arms and returned to the present. The beautiful and blessed present. The horrid rerun of the past disappeared instantly with the power of her remarkable, aware soul. She caught me before my thoughts became entangled in the ugly. We moved to another room, another scene. Into the moment.

Ella has Down Syndrome, a tripled-twenty first chromosome. And, most likely, a tripled intuitive sense, a gift that is uniquely hers.

She is also right about today’s visit: I am okay. I need a new prescription for glasses. No surprise there. But, no cataract surgery yet. My vision may be surreal for eight more hours. And eyes a tad more sensitive. But, I don’t need perfect sight to recognize love.

“Name an animal,” she says.

And the game continues.

Ella back view at Mt. Airy Park April 2015

 

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Imagination 101: how to approach the less-then-perfect

Posted in positive thinking, tagged , , , , , , , , , , , , , , , , , on July 19, 2016| 1 Comment »

Think for a minute, darling: in fairy tales it’s always the children who have the fine adventures. The mothers have to stay at home and wait for the children to fly in the window. (Audrey Niffenegger, The Time Traveler’s Wife)

The scene below could be an exploded toy box. A definite trip hazard. But, Ella has a plan in mind. She has decided today is Mickey Mouse’s birthday, a favorite theme. Bunny is his best friend. The building blocks represent a work in progress—for Mickey. The lumps of Play-Doh, albeit dry, are the blue dog’s food.

Each item has a purpose in play. However, the whole gets Grandma a little dizzy. I anticipate work for both me and the vacuum cleaner. Sure, the old table cloth is present for a reason. But its surface could be compared to a mesh bag. Not really suitable for holding items smaller than the holes. My beloved rug is at risk.

Sure, I could set stronger limits. But, the beauty of my little girl’s imagination is worth the fifteen-to-twenty-minute cleanup later.

She imagines a castle. The thin blocks become a road. Empty plastic eggs contain invisible treasures. For at least a moment, messiness becomes understandable as each part takes on meaning. At least from a child’s point of view.

And I wish this explained disorderliness could be transferred into real life, where judgment is quick. Hate is resolved with more hate. Greed is seen as success. Me-as-the-center-of-the-universe remains unrecognized as a problem.

Mickey is happy with everything he gets. Friendships occur without any awareness that Bunny is several times larger than Mickey, and she is a different color as well as a different species. The toys on the shelf are sufficient; Ella asks for nothing more.

The play area has now been cleared and cleaned. My husband and I need to walk through without getting injured.

However, another scattered drama will probably appear another day. Bringing further adventure. My agenda will remain on hold.

Ella will give the next lesson, without knowing she is the teacher.

imagination toys on floor

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Happy Fathers’ Day Times Three

Posted in positive thinking, tagged , , , , , , , , , , , , , on June 15, 2016| 1 Comment »

Anyone who tells you fatherhood is the greatest thing that can happen to you, they are understating it. (Mike Myers)

I watch my sons interact with their children. Both the games and the more serious moments. And I see men who are creating relationships, not simply setting rules from an I’m-boss position. Sure, my sons set limits. But they also let Katie, Rebe, and Ella know it is okay to reach for stars. The girls are worth whatever effort it takes.

In addition, my younger son helps with the care of his fiancé’s son. When Dakota was asked what he wanted to be when he grew up, he answered, “A daddy like Steve.”

What more could I want?

And yet my sons give to me as well.

A few days ago I called Greg, my firstborn son, when I was in a difficult and frightening situation. I was away at a writers’ retreat and my wallet was not in my backpack. I knew my husband was swimming at the Y. I asked Greg, “Are you home?”

He didn’t say yes or no. He answered, “What do you need?” And while he had very little time he stopped at my house and searched my couch cushions for the missing wallet. And then he called my cell and let me know he had not found it, but would help in whatever way he could.

I figured out where I had left my wallet with all its essential interior parts later—after stopping credit cards and replacing my driver’s license. All my money and identification cards were locked in a restaurant safe. And I sent Greg a voice message to let him know all was well. However, he must not have received the message yet when I called about something less important. He answered his cell even though he was busy at work. Of course I told him we could finish the secondary business later. And we did, while making plans for Father’s Day weekend and for the next day Grandpa and I have with his girls—our grandchildren.

Once again, what more could I want?

Not that long ago I called Steve in a state of near panic. I’d gotten lost on my way to a funeral. And never made it to the service. My husband was out of town at the time. While I knew my friends would forgive my absence, I had difficulty forgiving me. Steve, his girlfriend Cecelia, (also my good buddy) Ella, and Dakota seemed to know exactly what to say—and exactly when to simply listen. Yes, even the children seemed to be aware on some level.

When I was able to let my husband know about the incident, Jay offered me the same kind of listening ear and positive feedback.

This is a blog, not a full-length memoir. I can’t tell every story.

I am blessed. What more could I want?

Then, of course, there is the humor the men in my life provide. All three of my Petersen men know how to enhance a celebration or lighten a sad situation. Greg and Steve have a mock rivalry going about who is the good son. They have even signed cards or notes that way.  It’s the family inside joke.

Happy Fathers’ Day, Jay, Greg, and Steve. My mantra of gratitude repeats: What more could I want?

Happy Fathers Day

 

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Ella and the Dollhouse; three stories, one staircase

Posted in positive thinking, tagged , , , , , , , , , , , on May 25, 2016| 2 Comments »

Success is liking yourself, liking what you do, and liking how you do it. (Maya Angelou)

Ella finds two dolls inside the top floor of the dollhouse set up in the library. The male figure is noticeably smaller than the female doll. Nevertheless, they become Daughter and Daddy. Daughter and Daddy are their names.

One staircase and three floors is incidental. No problem. The characters move to the higher levels as if walls and open air did not exist. Hops are required on stairs. I become Daddy. Ella is Daughter.

When I comment that the leap from Daughter’s bedroom to attic has been a doozy, Ella does not respond. Either she is too involved in the game, or the slang term doozy is outdated.

“Carry me to bed, Daddy,” she says.

One plastic doll next to the other looks more like the letter X. But I have been living in the real world too long.

“Okay.”

And the same scenarios repeat. In cycles so rapid day and night have no meaning. The relationship between child and father does.

“Carry me to bed, Daddy.” Followed by, “Daughter needs ear drops.”

And Daddy carries Daughter safely—over the chasm of rooms that have no entrance or exit. Her ear infection disappears within two minutes per the library clock, and perhaps four trips up one set of toy stairs and one jump into the impossible.

I am Grandmother. Playing a role. When I first sat down on the floor my mind was immersed in the plot for a short story for grownups. It got sidelined temporarily. Somewhere between make-believe and the profound. In make-believe I enter the imagination of a little girl with special needs and special love.

Daddy is always available, whether he is big enough for the task or not. He shines. Daughter’s physical problems dissolve. Ella idolizes her father.

I speak in hushed tones. This is a library. Ella talks as if she were in the toy room in my house. A woman sits at an adjoining table. She does not complain. When Grandpa pulls out his car keys as we get ready to go, Ella offers to drive.

The woman bursts out laughing. She has been amused, not annoyed. I am happy to have the job of grandma.

Ella has left a few blessings behind.

Ella back view at Mt. Airy Park April 2015

 

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