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Posts Tagged ‘Down syndrome’

The simple things are also the most extraordinary things, and only the wise can see them. (Paulo Coelho, The Alchemist.)

Ella and I play trick-or-treat any time of the year. Our version transcends reality. The costume takes over the wearer. A skeleton drinks apple juice and it passes from bone to bone to the front porch.

Today Ella wants me to be permanent trick-or-treater while she adjusts the treat to the visitor.

“Hi,” I say, then complain. “I’m a tree, and yeah, I know the peaceful nature scene. Quiet. The woods. All that. But I have bugs climbing all over me. Squirrels are nuts. They don’t just eat them. And the birds? That early morning song is nice enough, but the pre-dawn time can get on your sap after a while.”

Ella smiles and then takes on a composed expression. “Okay. Here’s a woodpecker.”

I’m immediately out of character. Our girl has a sense of humor. Down syndrome, yes. Up personality? No question about it.

 

photo a combination of pic taken in our backyard and portion of public domain pic

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(photo of the two children taken by Alice Zeiser)

I choose not to place DIS in my ability. (Robert M. Hensel)

Buddy Walk Day. The Saturday after Labor Day brings

A sea of shirts in bright colors. Yellow this year. Thousands.

One day without any uninformed person

dropping both eyes and mouth into parallel

frowns and an I’m-sorry. Down syndrome isn’t sad.

Apologies come after simple happenings.

Spilled water—nothing a napkin can’t handle,

or an it-took-me-forever-to-find-a-parking place.

Smiles follow. My granddaughter takes her cousin’s hand.

Or does he grab hers? It doesn’t matter.

This group knows we are all one.

And celebration comes naturally

when our common space is love.

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It’s never too late to have a happy childhood. (Tom Robbins, Still Life with Woodpecker)

On Labor Day afternoon my granddaughter, Ella, and I play fast-food restaurant. She is at the drive-through and I am a 107-year-old customer with a special request. Since my chewing is limited, I want my order cut into small pieces: 2 hamburgers, a couple dozen chicken nuggets, five orders of fries.

She is willing to oblige.

“How much is that?” I ask as I reach for my invisible order from my imaginary car. (Fortunate, since at 107, more than chewing mechanisms would be out of order. Driving may not be advisable.)

“Nine hundred dollars.” She grins.

Wow! Service charges have gone up everywhere. However, in the pretend world I can reach into my pocket and find five dollars, a thousand dollars, or a magic frog.

Perhaps I should have given her the magic frog.

Imagination. I hope it stays with me until I am old enough to keep the nursing home entertained.

Ella’s real-life gifts appear as I get lunch ready. She makes Lego creations for my friend, Ann, to see by feeling them. Ann has been blind since birth. I don’t mind that Ella sits next to Ann instead of me.

After the meal, Ella brings Ann to our toy shelf and shows her safe-for-kid paint jars, stuffed animals, cars.

I watch. Enriched. Ella has Down syndrome: I am grateful to be favored by the up of her existence.

 

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No matter how many plans you make or how much in control you are, life is always winging it. (Carroll Bryant)

One more dead branch needs to be removed from our blue spruce; I haven’t faced the loss yet. The naked branch stays—with no hope of revival. The cost of maintaining the top branches is no longer worth it. The cost of removing the spruce is both high and final.

The tree was planted for our older son, Gregory, when he was a toddler. He’s in his forties now. He’s an accomplished writer. Greg’s newest book, The Dream Thief, is available for preorder. I have pictures of my son as a toddler as he watered the tree. It, too, was in early development.

The blue spruce once took over our front yard. Now, it has huge gaps between branches, like thought lapses. Warnings. The empty spaces will expand. And win.

Loss is never easy.

When a person dies loss plunges into deeper places. Several days ago, someone we have known for years, died. It feels unreal. I recall this woman on one hot day as she volunteered for kids with Down syndrome. Her face sweaty, her smile unaffected by the heat. Her gifts rooted in the hearts of so many people.

I think about this beautiful woman’s family. Friends. Grandchildren. And ask what happens next?

I consider the tree again, the one planted for my son, when my husband and I were proud of him for recognizing every letter of the alphabet before he was two. Now, his words touch minds and hearts. The tree won’t last much longer. My son and his talents affect many.

The woman who died suddenly, left a beautiful legacy and precious memories. May all who knew her embrace them.

Life is always winging it—with a lot of help.

For now, I celebrate hearing and giving kindness, laughter, the chance to offer an honest compliment. Peace, may it touch all, especially those who mourn.

May the green in today appear brighter, embraceable. For as long as possible.

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 I dream of giving birth to a child who will ask, “Mother, what was war?” (Eve Merriam, poet and writer)

As Ella moves through a dusty playground area, I watch the children’s interactions. Some of the kids are wild, climbing over one another on the slide. They laugh even when their bodies’ positions are obviously uncomfortable.

Other youngsters appear less aggressive. I notice the essence of both peace and war in scaled-down forms.

One bright, talkative little girl tells me the story of a skunk that appeared one evening on one of the softball fields. She is animated yet assures me no one was sprayed. Her spirit speaks peace. Another little girl and her younger brother race against Ella for a bouncy whale and dolphin.

Ella stands too close to the two children. She begs for a turn. I can tell the siblings are determined to maintain a battle over the sea mammals because they gesture to one another as Ella walks away. I lead my granddaughter in another game.

“Ella, I’m swimming, but I’m not very good at it. I need a lifeguard. Will you be my lifeguard?”

I move my arms in an awkward mock swim motion.

“Sure,” she answers.

The distraction works—at least until the two kids are called by their dad to go home. A simple solution. At least for the moment.

Mine. Mine. Mine. A universal problem. Ella also wants to help her grandmother. Play is serious learning. She doesn’t grab the dolphin until at least ten minutes after her antagonists leave.

War. It has lived since ancient times. Now, news travels faster through social media, television, the Internet. Stories appear slanted, tainted, unverified. And violence continues in various forms as TV watchers eat dinner.

Suddenly, I have indigestion.

Shadows. They have multiple meanings. Reflected images born from the sun. Shady areas. Loyal followers. Hidden flaws. Metaphors.

Find the kindest kind of shadow…

Illusive at best. I can only seek the goal I see and love to the best of my ability. Love is war’s antonym.

Attending a protest in front of an ICE facility in my home town was a recent choice for me. You bet I was frightened. However, no one ever said love was going to be easy. Yes, immigration control is necessary. Cruelty, especially against children, is not. Fortunately, the event was as peaceful as it was intended.

Some shadows need more attention than others.

Peace to all.

 

 

 

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Luke and ThomasGrandchildren are God’s way of compensating us for growing old. Mary H. Waldrip

Imagination, it gets soaked with the ugliness of world events and can be destroyed. I need space in between each hit from hate. Meditation, exercise, and play help both my physical and mental state.

My youngest granddaughter is here today to bring welcome sunshine. She names a toy koala, Thomas and a toy cow, Luke. (Since the doll-version is gender-neutral, the name doesn’t really matter in fantasy. Ella was Daddy in our last game.) The boundaries of reality expand in play.

“How high can you jump, Luke?” I ask as Thomas.

Apparently, the surface of my bed has lost gravity. Or fuzzy, button-eyed cows have super powers.

Thomas leaps and lands on a blue blanket—a cave, with a bear inside. Time to explore.

Danger means excitement, never malice. The bear growls, yet never attacks. The toys fall. Their injuries are healed with imaginary bandages. Within seconds.

And so am I…

 

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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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