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Posts Tagged ‘Down syndrome’

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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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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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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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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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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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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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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