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Posts Tagged ‘patience’

If you see the world in black and white, you’re missing important grey matter. (Jack Fyock)

Ella’s charm draws to her at least seven children from the YMCA pool.

“Will you play with me?” one girl asks, and Ella nods.

“What do you want to play?” the girl asks.

Ella hesitates.

“How about pretending to be frogs?” I suggest, slowly stepping away, giving the kids space around my precious granddaughter.

“Yeah,” this leader girl answers. “Frogs!”

“Hop. Hop,” Ella says moving along in the shallow water.

One boy with black curly hair shows me his swim vest, his ebony face bright with pride. “I brought it from home.”

“Looks great,” I tell him.

“Are you her mom?” one blonde girl asks me. I grin, grateful for her edited eyesight.

“No, I’m her grandma.” I wonder if grandmothers are supposed to hop like frogs in shallow water.

One look at the clock tells me this time will be short. Ella and I need to meet Grandpa in the lobby in about twenty minutes for our picnic lunch before Ella goes to afternoon pre-school. “Ten minutes and then we have to get dressed,” I tell her. “I brought tortilla chips today.” They are one of her favorite snacks. I hope they are enough encouragement to get her out of the water.

“No,” Ella responds.

“She can stay here,” one of the children offers.

I smile at the boy’s innocence.

“Is she a baby or does she just talk like one?” another boy asks. His voice indicates no condemnation, only curiosity.

“She isn’t a baby…but she is learning…” I answer, without any hint of censure in my voice. I don’t explain the what-or-how-of-her-struggles-or-accomplishments. The boy doesn’t pursue the issue with further questioning. Besides, I’m not sure how to answer. Each person learns at a different rate anyway. Ella has been reading for months, at least. Someday I hope to catch up with her when it comes to acceptance of people as they are. However, fine-tuned tongue movements and some motor skills may take her a bit longer to master.

Our little girl is a fresh five-year-old. She has not yet faced the full brunt of prejudice inherent to the life of anyone born outside the so-called norm. The little folk in the pool have not yet learned to recognize the facial characteristics of Down syndrome. Besides, our granddaughter wears them beautifully with her sunshine-white hair and huge blue eyes. They defy the brightness of a perfect summer day. Her smile could melt an iceberg. The children seem to recognize that gift intuitively, knowing she is real and a dependable friend.

The children wave good-bye. Our Y friends stop by our lunch table to say hello, more to Ella than to Jay and me. And that is okay. Ella isn’t worrying about what happens tomorrow—or the next day. She cries when she needs to cry and the tears end easily. She laughs when she recognizes the humor in life. And that happens often.

I’m not saying that every day is easy. But few things that are worthwhile come without effort anyway. I guess Ella is my constant reminder that the world in black-and-white misses out on a lot of color—as well as grey matter. Later I have the opportunity to leave the house to go to another exercise class, if I want to go. But, I don’t want to miss an extra minute with Ella. Not today. She may have a life lesson I will need to use later.

flying turtle

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Innocence is one of the most exciting things in the world. (Eartha Kitt)

My old cell phone hasn’t had a battery for who-knows-how-long. However, five-year-old Ella picks it up and brings it to life with her imagination. She mimics the motions she has seen in adults, complete with subtle movements and voice tones. When her conversation has ended she closes the flip top slowly, deliberately. I’m the follower in this scenario, the fortunate observer. Ella understands but is not able to fully verbalize what she knows.

I guess the phone has rung again as she says, “hello,” hands the blackened screen to me, and adds, “It’s Dy,” short for Daddy.

She grins when I say that he is playing baseball and not at work. Daddy is working, but explaining an office setting to a five-year-old doesn’t create fun play.

“Should he stop at the store and get bananas on the way home?” I try for mock seriousness and hope she buys it.

“Yes,” she answers.

“What else?”

“A bike,” she adds.

I refrain from laughing. Nothing seems random in a child’s world. After we finish with several quick turns saying hi, bye, and what-are-you-doing-now, we enter a pretend playground where Dora, the Explorer; a tennis ball; and a plush ladybug all take turns going down a plastic slide. Reality is suspended for a while.

And I feel strangely free, privileged, invited to this spot on the floor surrounded by toys on an ordinary Thursday morning.

The folk who read my blog regularly know that my youngest granddaughter has Down syndrome; Down syndrome does not own my granddaughter. She continues to play as I get her ready to leave for the day. I have trouble getting her shoes on properly. They need to give her adequate ankle support. She seems to understand my frailties and doesn’t fuss. I thank her for her patience and wonder how much she intuits. This little blonde with the huge blue eyes is amazingly easy to love.

I envision her at Daycare after school some day as she plays with a toy phone. Does she ever say, “Hi, Mawmaw?” This isn’t the kind of thing I am likely to know. My hearing isn’t that good within the same room, with amplification, much less from one part of town to another. Nevertheless, I smile thinking about it.

She smiles back now. That’s more than good enough.

the world as it should be

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I am different, not less. (Temple Grandin)

 If I could I would shout Temple Grandin’s statement across the Internet, national news forecasts, and local gossip networks: “I am different, not less.” Autism did not prevent Grandin from earning a doctorate degree. Actually, when I grow up I hope to be just like my youngest granddaughter, Ella. She has Down syndrome.

Some people turn away when they see someone with a disability like Down syndrome, as if the tripled twenty-first chromosome were contagious, or as if communication with an individual with a rounded face and slightly slanted eyes were similar to interaction with an alien from another planet. Organizations such as the National Down Syndrome Society have helped alter that notion. Efforts to change attitudes toward folk with other disabilities continue. The Autism Society explains how a person with autism perceives reality.

I have to admit that I have learned more from Ella than she has learned from me!

Our little girl has charisma. Her mission begins with a smile that reaches into the heart, an acceptance that doesn’t judge. When Daddy and Cousin Kate stopped by the daycare center to take Ella on a trip to visit her great-grandmother, the other children formed a circle around her, keeping Ella captive. They were unwilling to relinquish their princess. Daddy needed to trick the children into a race so that he could grab his daughter and run.

Ella does not present herself as better—or less—than anyone else. True, her life has barely begun; she needs to double her age to reach double-digits, but I have never seen any signs of ego, impatience, or striking-out-in-uncontrolled-anger. Oh, she knows the word no and uses it often, but not as a weapon. She seeks independence the way any other child does.

Our granddaughter has had three surgeries, two that were serious; she is terrified of medical settings. However, after each visit she recovers into her smiling self with remarkable speed. She lives in each moment; now is the only time that offers usable power.

I study a photo of the toddler son of a friend. He, too, has Down syndrome. He has had multiple surgeries. Nevertheless, he grins at the camera as he waits for his breakfast. I think about how few adults would respond with such enthusiasm. Not only would they be repeating poor me as if it were a refrain in a popular song, they would be wondering why they had to wait to be served, considering all they need to endure. Most folk with a tripled chromosome don’t see themselves with the sun rotating around their needs.

I catch myself fussing with a bouncing cursor that reminds me of a drunk fly circling spilled honey; my irritation almost reaches uncontrolled cursing of another kind. This should not happen!

Yeah, well, I’ll figure it out, eventually. In the meantime, today is a day to celebrate, September 8, 2014. Ella is five-years-old. (Posting won’t happen today, however. I need a day or so to let the words settle before I edit them. I cannot claim perfection on any level. I don’t even feel free to be totally me no matter where I am; Ella is still giving me lessons in that area.)

I am sharing a photo of her birthday cake, not because it is beautiful, but because it is delicious inside and a tad ordinary on the outside. I have never taken a decorating class and probably won’t—I have a tendency to eat too much of the art form. The layer-fit alone disqualifies my creation from any cooking magazine, but I bake from scratch and the frosting contains fresh strawberry.

Happy Birthday, Ella! May we celebrate the differences that make any ordinary individual spectacular.

Ella's birthday cake, five years old

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I’ve lived through some terrible things in my life, some of which actually happened. (Mark Twain)

In the wee hours of the morning a six-point earthquake hits the Napa Valley; San Francisco responds with some twitches strong enough to sway a skyscraper. Jay and I are on the eleventh floor of a hotel—we sleep through the rocking. We don’t discover what we missed until the next morning at breakfast when the other members of our tour tell us what happened. Many of our fellow travelers wondered if the building was cracking. We haven’t been watching the news, and we don’t plan to follow it; this is our vacation.

However, the wine tasting event, next on the agenda, is canceled. The roads to Sonoma are torn like cheap cardboard. Since I drink un-fermented juice, I’m not as disappointed as some other folk could be. I had planned to celebrate the artistic twist of the vine and the shine of the grape against the sun. Fortunately the wine drinkers have a sense of perspective. They show greater concern for the people affected by the quake. I don’t hear any grumbling.

Our adventure has barely begun. A car fire on the expressway ignites a wildfire that closes a major expressway—the one leading to our next stay.

Our tour director, Craig Cherry, maintains a sense of humor. He and our superb driver, Jeannie Williams, map out another route, hours out of our way.

Then comes strike three, more literal than anyone would like. A rock flies from a truck into the windshield of the bus. Tiny shards fly everywhere. One hits the leg of a front-row passenger. She is too shocked to react. The window crack grows from a small line into a much larger one. The window could shatter at any time.

Jeannie and Craig find a close convenient store large enough for us to wait until a new bus arrives. The wait in ninety-nine-degree Fresno is amazingly short. While our tour guide and bus driver work we build camaraderie: jokes; shared life stories and ice cream; unusual items on the shelves; “Can you believe this gizmo makes popcorn in your car?”

When the remote control to the DVD player is missing batteries, Craig announces, “I’ve got to be on Candid Camera!” We are all old enough to remember the program. Fortunately, someone toward the back of the bus has two double AA’s.

By the time we arrive at our destination we aren’t comfortable. We’re stiff, tired, and a bit dazed. But, chances are that if any one of us are asked if we remember the Globus California  Tour of late August, 2014, we will smile and say, “Oh, yeah!” with a smile the size of the state. Sometimes bad circumstances bring out the best in people. Thanks to Craig for his leadership. A little humor and a lot of patience make all the difference.

(photo taken from the bus of a burned section of forest, fire caused by a lightning strike)

burned forest in California

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Old age ain’t no place for sissies. (Bette Davis)

My 94-year-old mother-in-law sleeps on a narrow couch. She looks as uncomfortable there as she does inside her fragile body. She smiles and seems emotionally touched by the gentle stories I tell her about her grandson and great-grandchildren. But, I suspect she would agree with Bette. I have enough tact, however, not to discuss the obvious.

While my mother-in-law rests I elevate and ice an amazingly painful foot. I injured it the first day we arrived. This isn’t the out-of-town weekend I had in mind.

At the same time I sit with my youngest granddaughter, Ella, on the back porch of my brother-and-sister-in-laws’ house. Ella watches Peppa Pig on my iPad as I watch my ten-year-old granddaughter learn the art of hooking a bass with a lure. Ella and I are at the top of several rolling hills so I can’t see Kate’s face, but I know she has wanted to do this for a long time.

The action on the porch is different, subtle. Several ruby-throated hummingbirds flit close by. Then other species of hummingbirds appear—long enough for me to see their color, nothing more. A striped lizard makes an appearance. The next heat wave hasn’t passed through yet. The shade brings amazing comfort.

I think about my mother-in-law sleeping inside. My limitation, even though this one seems temporary, reminds me to celebrate what I can do—not what stops me. Sure, I can’t trek through the woods right now, but someone needs to stay with our youngest granddaughter. A four-year-old could create a hazard among swinging hooks. And who would have volunteered to be a companion to our littlest one, even if she didn’t have a foot the color of bad sunburn? Uh, Grandma?

Ella points to the screen as Papa Pig dives into the water without making a splash. She grins. Perhaps she realizes the absurdity of diving anywhere without making an impact of some kind. Ella already knows life isn’t easy. She approaches Down syndrome with an up attitude.

I study the striated skin on my arms. The challenges of aging occur slowly. I have no idea how many losses it will ask of me. But I’m not living in tomorrow. Today a blonde beauty smiles at me with a love of life that’s contagious. She doesn’t count wrinkles; she looks straight into the heart.

I chose to spend time with Kate shortly after she was born because my mother-in-law had bonded with my children. She showed me how much that connection is worth. Nothing less than priceless. That lesson isn’t lost because my mother-in-law is now in the winter of her life.

Here’s to the older folk of the world. We’re all headed that way. Eventually.

enjoy little things words of wisdom

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If you don’t know where you’re going, how will you know when you get there? (Casey Stengel)

When is this sink ever going to drain? I ask myself. Sometimes aloud. Sometimes not. With or without an oath. The plunger is my friend, but sometimes it gets lazy and refuses to let the water move no matter how much energy I put into my part of the job. After all, I have not dropped crud or grease down the pipes. Sure, the man who put in my new dishwasher said I should have one of my old pipes replaced, relatively soon. It looks like it came from Rome’s original system. But, if it has lasted this long, and all I have is a few occasional drips easily captured in an aluminum pan, what should it matter? Someone is coming next week to look at the problem.

“Sure, I can handle it,” that man says as he squats under the sink. Then comes the uh oh. The piece breaks off in his hands. I suppose I should have taken a picture of the rotted, clogged, rusted pipe that has been living under our sink since the house was built in 1957—but it wouldn’t have drawn many people back for a second look. If this piece of pipe had been living tissue it would have needed emergency bypass surgery. The medical team would have wondered how the patient had managed to stay alive.

Nothing short of a miracle has kept water flowing through galvanized metal blocked so thoroughly acid would need to fight to pass through. And yet, this old hunk of metal has done the best it could until the end. Sorry I made you work so hard, I tell the severed piece lying on my kitchen floor. Although I’m not really talking to an inanimate object. I’m telling myself to pay more attention to those aspects of the ordinary that give me clues I ignore, generally because I’m busy with so-called more important matters.

Sure I know where I’m going. Sort of. On a spiritual plane anyway. But since I happen to live on this existential planet it might be a good idea to recognize where I am, every step, stone, and pipe along the way.

tomorrow year not specified06092014_0000

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When you set sail for Ithaca,
wish for the road to be long,
full of adventures, full of knowledge. (C.P. Cavafy )

My husband, younger son, our youngest granddaughter, and I have set sail for St. Louis in a Toyota. We decide to stop to eat. Customers surround the building at our first choice. Sure, this could bring an adventure, but not the one we had in mind. Our little one doesn’t sit still long. Besides, my husband’s mother, Ella’s great grandmother, is waiting for us.

The next restaurant looks much better, especially since I have a gift certificate for this place in my purse. We get a table without a wait.

“Mom, look, isn’t she cute?” comes an animated voice from the table behind me. A teenaged girl with bright eyes and neatly styled dark hair sits with her mother. The girl points to Ella.

“Come on over and say hello,” I say.

The two girls have something in common: they both have Down syndrome.

The teenage girl’s mother and I talk. Before long I realize that we have been visited by a celebrity. The girl with the dark hair’s name is Karrie Brown, easily found on Google. She dreamed of becoming a model. And she did. She has 31,831 likes on her Facebook page as of this moment. (correction, 31,834: I am now one of them.) The following link is only one of many sites that follow her journey: http://www.glamour.com/fashion/blogs/dressed/2013/09/karrie-brown-is-17-has-down-sy.htmlhttp://www.glamour.com/fashion/blogs/dressed/2013/09/karrie-brown-is-17-has-down-sy.html

Karrie’s determination encourages me to keep going after my goal. Age does not need to stand in my way. Too old is a poor excuse. I will not use it. Besides, I have two novels ready to go, and I have had more short stories and poems published this year than I have ever managed previously. I am a late bloomer in the extreme. Okay, Grandma Moses was older.

Ella smiles through bites of chicken. She has possibilities, too. Her speech may be limited, but she loves words—and she sounds them out. She works to capture them. As we continue on our travels Ella goes over the same printed cards with a level of concentration that makes me smile all the way through. Moreover, our youngest granddaughter doesn’t complain about the trivial. She has larger visions in mind. Who knows what adventures she will discover? I’m with her all the way.

People with Down syndrome are as individual as everyone else. They may be likely to display certain characteristics, but these actions don’t describe every person with Trisomy 21.  I notice that my little girl doesn’t need to dominate or be superior in any way. She is who she is. We could all learn to have her level of acceptance. We could all learn from Karrie’s stamina and positive attitude.

I don’t think meeting her was an accident. Some higher power led us to the table behind her and her mother. Her sister just happened to be our server. What a blessing!

Keep up the good work. Karrie. This world can use your positive and beautiful example.

Photo from Karrie’s Facebook page: Karrie Brown Modeling the Future

Karrie Brown - Modeling the FutureLove can’t always be perfect, but it can certainly be sincere. Ask Karrie. It’s her way of life.

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The most precious gift we can offer anyone is our attention. When mindfulness embraces those we love, they will bloom like flowers. (Thich Nhat Hanh)

I am enjoying time with friends and listening to what they have to say, to who they are. But I am distracted by a tickling in the back of my throat and ask Marie to reread an inspirational passage she has just read. I’d been coughing and all I heard was the cadence of her voice.

As I open a cough drop and lay the wrapper in my lap I notice something I’ve never seen before. Sure I’ve soothed my throat with Hall’s Drops for years, but I never paid a second’s notice to the paper. All I cared about was easing the irritation. Messages appear on the wrapper: Push on. Don’t give up on yourself. You can do it. I laugh and then read them aloud.

All four of us have never noticed the words tucked around that promise of relief. Pat gets up to ask her husband if he has ever seen the tiny printed words. He has. I gather the rest of us have been too busy, focused only on a task—or worse on the end product, not the blessings inherent in the moment. Since the purpose of our gathering is spiritual, I get the clue: life is in the now, every minute aspect of it.

Two days later, after I’ve taken a picture of the wrappers that didn’t get blown away by an unexpected wind that reached into my pocket, something else unexpected happens. I haven’t had breakfast but feel as if my stomach is full, or as if something very heavy is weighing it down. Nevertheless, I manage to sample two free cookies and my usual coffee with another group of friends. Within an hour I’m desperately sorry. Everything comes up much faster than it went down.

Since my husband continues to recover from fractured ribs this is not a good time to be relegated to the couch—inches from a plastic bucket. However, like the unexpected blessings printed into the wrapper, surprises appear.

“What can I get for you?” my husband asks. True, my gut hasn’t yet recovered from my last upchuck, but it doesn’t matter. Jay doesn’t want me to get dehydrated. “I need to try to do a little more anyway.” The graciousness in his voice is transparent. This is good. It’s what real-life love is all about.

cough drop wrapper

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The possibility for rich relationships exists all around youyou simply have to open your eyes, open your mouth and most importantly, open your heart. ( Cheryl Richardson)

If I had been given a crystal ball before I was married, I’m not sure I would have been grinning like a school girl as I took my vows. Oh, I’m not regretting that choice; I’m considering everything that happened just because life doesn’t play favorites. It rains both fortune and misfortune without deciding where either should land.

Not everything I saw as a treasure contained lasting gold and not every catastrophe was fatal. In fact the most difficult situations often brought me to a new level of understanding. Actually, I’m not too comfortable with the folk who are completely satisfied with themselves; I have nothing in common with them. They don’t have anything more to learn.

On July 3, 1971, in an elegant, impractical white gown I wore once, I didn’t foresee two sons and three granddaughters. If I had known one of those beautiful girls would have Down syndrome I would have been terrified. Of course at that time not much help was available for folk who had special needs. Moreover, Ella would require two surgeries before she could leave the hospital after birth, one for duodenal atresia and the other for an AV canal defect. Heart surgery is a relatively new medical advancement. Perhaps, the lack of a future view has been fortunate.

In those long-ago years my heart hadn’t been prepared for the spectacular gift I was going to receive either. My spirit wasn’t large enough yet. However, our youngest granddaughter enlarges it just a little bit more every time she grins and her eyes sparkle with honest love. Most people, and I’m included here, have an innate desire to succeed. In order to do that they compete for first place, for honors, for look-at-me in some form. They often don’t hear what someone else says because they are too busy planning what they are going to add. Most folk with Down syndrome are who-they-are. They don’t try to dominate. They are real. They give without strings attached.

When a pregnant woman learned she was carrying a boy who had Trisomy-21, better known as Down syndrome, some young people who live that life gave her an answer. Warning: the beauty in their responses can lead to leaky tear ducts.

http://www.upworthy.com/a-pregnant-woman-learns-her-baby-has-down-syndrome-people-who-have-it-answer-her-one-big-question-2

March 21 was World Down Syndrome Day. That date was chosen because Down syndrome is caused by the tripling of the twenty-first chromosome. Somehow, I suspect the people affected tripled their ability to grasp patience and joy, too. My Ella teaches the importance of simplicity, the glory of living in the moment, and the wonder of learning something new.

May the gift of the so-called handicapped become contagious. Peace to all!

they call in down syndrome but

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The following is the guest blog I promised by Sarah Wilson of Ottawa, Canada. Sarah may have needed to try harder to become a coach in her own business. But she doesn’t focus on the struggle. She lives the triumph.

Determination gives you the resolve to keep going in spite of the roadblocks that lay before you. (Denis Waitley)

I never knew until recently what polarity really meant, but I have come to understand it as the act of attraction or manifestation. For example what you attract or manifest to your life is what’s meant to be in that moment. Negative situations arise and create negative results, but good can come from them; it’s all about perspective. I strongly believe everything happens for a reason and whether good or bad, every experience we have in our life was brought to us for a reason.

For example, I was born with a physical disability or what I call unique ability. I think it also has to do with your energy and keeping it in a positive state rather than negative. I think as much as you need that push and pull of negative vs. positive in order to have life lessons and make the best decisions for yourself within each moment; it is very import to try to find some balance that works for you. This is because being super happy all the time can be super annoying very fast to others, but also being down all the time is not only draining to you but can be draining to others around you as well.

For me I have always thought that having a disability, on assistance in low income housing is just the way it was always going to be for me. I really got into a space where I settled and thought this was just as good as it was going to get. But starting college at age 18 began a journey of self-discovery.   When I started my business and left my last relationship I decided, “No, this isn’t as good as it gets; I want more for myself.” It took these two life moments to really get me to realize that my choices needed to change.

Life has been far from easy for me but I refuse to have decisions made and handed to me as if I were a child. I think that working for what I want and need helps build character and helps an individual mold his or her own course in life. Growing up I had a lot of support and it wasn’t that things were handed to me, but I didn’t want for much either. Perhaps I am fortunate because growing up I didn’t have many moments where I was made fun of or looked at as different. This really didn’t take place until my first year of college. I didn’t quite understand this situation since I came from a very sheltered background and moved from one small town to another. But I guess location doesn’t determine people’s nature and whether or not they will respect you. This provided yet another character building moment in my life.

Throughout my journey I really wouldn’t change anything because I think if I did I wouldn’t be where I am in my life and I wouldn’t have met the people I have. This life hasn’t been easy and I wouldn’t wish it on anyone, but I think it takes a strong person to get through the things that I have overcome and why I have had issues with confidence throughout my life.

I believe there has always been some part of me that knew I could persevere, and I did!

In life I think balance comes from, belief, trust, and faith in yourself and that you can do whatever you set out to do. I don’t think anyone can be balanced all the time because people’s faith and trust gets tested from time to time. After all no one is perfect; right? I have come to realize that the key for me is to have supportive people around me. They make the difference.

I do think it is extremely important to have your own faith and belief in yourself. It is also essential to have other like-minded people around you who believe in you. This makes it much easier to keep moving forward. For me, I have always felt that events happened to me for a reason and I believe everyone was put in my path for a purpose. I think my life purpose is to teach others how it feels to live in a lifestyle that requires courage for survival, and spread the message that no matter what obstacles in life appear, you can persevere.

dancing in the rain PIQ

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