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Posts Tagged ‘Down syndrome’

One Smile, a Beginning

Posted in Uncategorized, tagged , , , , , , , , , , , , , , , , on July 3, 2015| 2 Comments »

The world as we have created it is a process of our thinking. It cannot be changed without changing our thinking. (Albert Einstein)

The world as we have created it is also a process of our caring, social awareness, and empathy. It cannot be changed without changing our approach to one another, without cutting out all biases and prejudices, seeing with fresh vision.

Wayne, the son of my long-time friend, Gladys, now deceased, shared this story. It fits into the attitudes I share weekly in this space:

“The coolest thing happened tonight. A friend was treating me to dinner at Frisch’s for helping with some mulch. I noticed a table with some special needs adults and case workers right in front of our table. I made eye contact and smiled at the people facing my way and went back to eating dinner. Suddenly, there was an arm around my shoulder and it was one of the adults with Down syndrome from that table. He was dressed in a Cincinnati Reds outfit.

“‘I love you,’ he said giving me a big hug. And I told him that I loved him, too. He then did the same to the young man sitting across from me. This gesture was an example of unconditional LOVE. I felt as if I were in the presence of an angel. I am profoundly touched and grateful.”

Several of Wayne’s friends mentioned a fact those who know special-needs folk realize; their good works aren’t hindered by overworked egos. In my April 8 blog, Scot: It Doesn’t Take Much To Make Me Happy, I introduced a loving adult with Down syndrome. Scot doesn’t let formality get in the way of giving either. He hugs and he is good at it.

Not many people are able to express affection without some reservation. Actually without a lot of reservation. All living creatures deserve respect. And yet I can’t imagine petting a pit bull without a proper introduction. True, I’m allergic to the dander in dog fur. But, this strong breed has an undeserved reputation. And yes, both ego and fear form a larger barrier around me than I would like to admit. I can be shy around people I’ve never met as well.

Wayne is a talented musician. But he was not taught to act as if he were better than everyone else because of his gifts. His mother Gladys also showed me what unconditional love means. At one time I wasn’t sure that I was capable of much of anything. Gladys accepted me as I was—and then helped me to view my life differently. She overcame enormous struggles in her life. Dire Poverty. The death of her mother when Gladys was only six. Gladys lived in the present and saw the good in each day and in each person.

I suspect the gentleman who approached Wayne sensed the honesty in his smile. Wayne wasn’t patronizing the group at the next table. His gesture came from a sunshine-heart.

And perhaps the difference between the special-needs-huggers and the reserved normal folk is spiritual. Just maybe the word needs should be deleted and special highlighted. These people erase the non-essentials: What could happen if?… I don’t know you… This is socially unacceptable… All the artificial contingencies disappear and pure gift remains.

Perhaps, if the special folk decided to take the time to consider the sit-straight, don’t-look-anyone-in-the-eye rest of the world, they might feel sorry for the so-called normal sector.

But I doubt that they would look down on anyone.

if disabled people were head

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Team Payton and Bethany

Posted in Uncategorized, tagged , , , , , , , , , , , , , , , , , on June 9, 2015| 2 Comments »

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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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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Scot: “It Doesn’t Take Much to Make Me Happy”

Posted in Uncategorized, tagged , , , , , , , , , , , , , , , , , on April 8, 2015| 2 Comments »

This is what you must be like. Grow wherever life puts you down. (Ben Okri)

Scot wears a shirt that says: It doesn’t take much to make me happy. Perhaps that is because he doesn’t see the optimist’s glass as half-full; he sees it as close to overflowing. He doesn’t need a thrill ride at an amusement park. Trying on hats at Walmart can make his day.

When Scot was born fifty-one years ago, his tripled twenty-first chromosome dubbed him a mongoloid, an anomaly. Few people in those days saw beyond the almond-shaped eyes, small ears, and lowered muscle tone.

However, on February 4, 51 years ago the obstetrician told Scot’s dad that his newborn son had Down syndrome. He advised Dad not to tell Scot’s mother. The pediatrician would do it. His reason was not to protect Mom for just a little longer—it was to allow her to bond with Scot, to hold and to fall in love with him. Then when the pediatrician told her what to expect, he could also advise her to treat Scot as she would any other child. In this way his parents could face challenges, not impossible roadblocks.

Scot’s gift is hugging. He does not make judgments based on appearance. He chooses the person he will embrace next for his own reasons; he never explains why. Possibly that individual needs his positive energy—that over-sized woman at the mall whose eyes say life has dealt her more blows than she can handle, or the elderly man who hasn’t been touched in years.

This is Scot’s approach. He stands before someone, extends his arms and then watches for a response. If the person is responsive he offers his love, no strings attached. He has the kind of simplicity that is the essence of genuine love. Most people without the burden of an extra chromosome bear the weight of ego—viewing who-they-are as superior or inferior. Scot doesn’t get caught up in drama. He is who he is.

In fact, one of his favorite possessions is a stuffed toy rat. Somehow since Scot is someone who doesn’t judge, that doesn’t surprise me.

Many people may look at folk like Scot, or my Ella, and see the characteristics that suggest slower learning, perhaps a thickened tongue causing slowed speech. They turn away or make snide remarks. I’ve had people tell me they were sorry when I have told them my granddaughter had Down syndrome.

My response has been that I am not sorry at all. My Ella is only five-years-old and I can’t imagine life without her. Scot has been on this planet ten times longer. He has blessed people without knowing he is doing it, the purest form of giving. Is he perfect? Of course not. No one is.

But someday I hope to see the beauty in a rat, the homeliest person in the mall, and every gray ordinary day—just like Scot can. In the meantime, I will simply let as many people as possible know that Down syndrome does not mean down-anything-or-anyone. And when you see a man, woman, or child like Scot in the picture below, know that you are witnessing possibilities…

Scott04072015_0000

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Happiness Taught Ella-Style: With and Without a Fever

Posted in Uncategorized, tagged , , , , , , , , , , , , , , , , , on March 21, 2015| 5 Comments »

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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Inside the Wait

Posted in Uncategorized, tagged , , , , , , , , , , , , , , on January 27, 2015| 5 Comments »

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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Resilient Like Ella, Humble Like Barb

Posted in Uncategorized, tagged , , , , , , , , , , , , , , , , , , , on January 21, 2015| 1 Comment »

I am a tiny seashell
that has secretly drifted ashore
and carries the sound of the ocean
surging through its body. (Edward Hirsch)

I may not live anywhere close to the ocean, but the ocean-sounds of my experiences remain in the short seashell-body of who I am. They hide in anyone old enough to have a past.

Yes, free will exists, but often knee-jerk reaction comes from expected hurt or rejection that has nothing to do with the moment; it involves long-ago scars formed in the evaporated sea of the past.

The love and acceptance of others creates fresh memories and the ability to see beauty—inside and outside of our shells. There are people who walk the earth who don’t know they are angels. They bring enough light for others to see beyond the expected.

Ella’s soft pink animal-print blanket lies over a chair for show—so that it can be photographed. The blanket was made to comfort her, to keep her warm during a time that promises to be difficult. Her open-heart surgery is scheduled for January 30. The large flannel square is a gift, offered by a woman who doesn’t know our little girl. Barb may or may not have seen a picture of our granddaughter. She gives because that is what she does. I told her I included photos of her creativity in my blogs. I don’t think she has ever looked at them. Praise is not her goal. A simple thank-you suffices.

I now want to be resilient like Ella and humble like Barb. I know Barb’s last name because I have finally been introduced to this gentle angel, but if anonymity serves her intentions, then publishing her first name is stretching it as far as I dare.

Once upon a time I recall being in a retreat group that was asked a rhetorical question. “What would the world be like if you hadn’t been in it?” The second question develops from the first: “What persons have touched your lives in a special way, yet never knew they blessed it?” That question was given more time.

Those people continue to arrive. And I suspect that if I am busy enough with gratitude there won’t be as much room for resentment and worry.

The sound of the ocean surges inside my metaphorical seashell. And sometimes it remembers storms; other times it recalls gentle waves and warm water. It explores each grain of sand underneath it, and knows it is not alone.

blanket made by Barb

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