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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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 Stop acting so small. You are the universe in ecstatic motion. (Rumi)

When I create characters and put them on a page they take more space than I give them. They woo me as if they were real, and I begin to resent time spent on the mundane got-to-do tasks. When the phone rings I am grateful to see on Caller-ID an out-of-state number I don’t recognize. After all, I don’t need a condo in Outer Mongolia; free offers rarely are. Let the ring come to a natural end.

However, sometimes the interruption is my work.

Yesterday I planned to finish the final edits on a novel. It didn’t happen. I needed to babysit for my two younger grandchildren. Six-year-old Rebecca and I turned my ’97 Toyota into a taxi while she presented plans for the afternoon with her younger cousin, Ella. I listened. Miss Rebecca’s enthusiasm is contagious. It fills in the creases in my marionette-lined face and lets me know I’m alive—outside the margins of a printed page. I can easily become a hermit. Heaven to me means hours creating fiction or editing real life into my own point of view. Actually, heaven and earth, also known as the profound and the banal, or the uplifting and the detrimental, live together somehow.

Grandma’s taxi turned into a plane. We flew into a cloudless sky while the trees budded within view. We belonged to the universe, and I realized my metaphorical cave, even if it had a hundred windows, could soon grow dark and shrink into light and shadow.

“Where should we go next?” I asked my granddaughter.

“To the park.”

“By taxi or plane?” I ask.

It isn’t very far. She decides we can go by car as we join the universe in ecstatic motion.

a smile from God

 

 

 

 

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The more sand that has escaped from the hourglass of our life, the clearer we should see through it. (Jean-Paul Sartre, writer and philosopher 1905-1980)

My hourglass of life has had a lot of sand leak out. However, that doesn’t mean I look through the sides with any clarity. In fact, sometimes I rely on the know-how of persons far younger.

As I open the freezer door melted vanilla ice cream drips out. Fortunately our kitchen is small and a towel is handy. This is not exactly a welcome sight on a day when my two older grandchildren are spending the day with Grandma and Grandpa. At least the problem does not seem to be a faulty appliance. Either the door didn’t get shut all the way or something fell and blocked the vents.

“Hey, Kate! Want to earn a dollar or two and help Grandma clean this mess?”

My young buddy is ready and available.

Grandpa helps to empty the space. Then Kate and I get to work. The bottom metal tray is locked into place. I recall pulling it out once, accidentally, to removed spilled ground coffee. I don’t recall how I did itaccidents don’t necessarily replicate themselves for the sake of convenience.

Kate stands on my handy-dandy, short-person kitchen stool and checks the mechanics of the sliding drawer. Within seconds the drawer it out!

“Way to go Kate.” The girl has inherited her mother’s practical creativity. Soon the freezer is clean.

“So, how should we organize this?” I ask.

“Bags on the bottom; boxes on top.”

Somehow the small space seems to have expanded. “Smart girl, Kate. This looks great.”

Sure, I could bemoan the fact that I needed a ten-year-old girl to figure out how to remove a drawer. Or I could celebrate her and maybe even learn how to take the tray out myself the next time. Chances are there will be a next time. I have no plans to claim perfection anytime soon. The fun comes in the adventure of learning, eventually anyway.

judge a fish

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It’s not what you look at that matters, it’s what you see. (Henry David Thoreau)

I wonder if my vision blurs sometimes and prevents me from seeing what I think I’m observing. When I searched the inside of my husband’s car for our youngest granddaughter’s glasses, I really did want to find them—immediately! Those prescription lenses were expensive. I found a red ball I would have sworn was in a bin with other toys, some old useless receipts, and a dusty cough drop. But I saw no sign of an orange case with purple swirls. My son ordered a new pair while the original copper wire-rims waited in a school bus, classroom, or limbo. Or so we thought.

Then, weeks later as I went to the car to retrieve my husband’s cell phone, the case appeared on the floor behind the driver’s seat. I stared at what-looked-like-an-orange-mirage a minute before I picked it up. I had been in that spot many times since the day I looked for the missing glasses. The case gave me no clue about where it had hidden since there were no scratches or dirt tracks. It did not tell me why it had taken such a long hiatus. (Comments open to a peculiar lost-and-found story.)

I like to delve into deeper meanings whenever I can. What am I ignoring in my own life just because I don’t want to see it? Are there opportunities I miss because I take an easier path instead?

In the past week I have become aware of people who have gone into hospice; one died yesterday. She left a husband and two young sons. Even though I didn’t know the woman well I knew her husband. I criedfor them and for me. I know she dedicated her life to family. She saw through spiritual lenses that had transcended circumstance. It isn’t likely that she will be found on a listing of famous people; she will be found on a list of people who made the world better because she lived. And that is what matters.

And so I ask for the vision to see better—while searching for lost glasses or for recognizing that moment when a kind word or action can make the difference between despair and hope.

glasses with angel

 

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The only true wisdom is in knowing you know nothing. (Socrates)

The ancient philosopher Socrates may not come to my mind as I listen to ten different ways to use social media as a writer, but how little I know does. I grew up in the fountain pen and manual typewriter era. And I wonder, am I buying the gray-haired stereotype about technology or is some gray matter active under my skull right now? Fortunately the facts-ready speaker at the Mad Anthony Conference gives plenty of reference for later study, so I give up taking illegible notes and take up listening. Hurray for one mode of operation. It helps me to relax and take it all in one step at a time.

As the conference progresses I network face-to-face, meeting and re-meeting other writers. The same advice repeats in several talks: Agents and publishers are human. Approach them as fellow flesh-and-blood creatures, not as unreachable, above-all god figures. Smile. Be yourself.

Moreover, my writing represents who I am, but it only reflects my existence. My spirit stays captured within my body. If I get a rejection or two the earth will continue to spin, the sun will rise and set on schedule, barring Armageddon. Then my computer would be out of commission. Nevertheless, I would probably still grab a paper and pencil and try to chronicle something. Maybe that’s why I go to conferences to learn whatever I can about my craft. I’m addicted to story-telling and don’t want to recover.

In the days of carbon paper and typewriters, a mistake at the bottom of the page required hours of penance. Today the backspace key makes error correction simple. Learning on a deeper level—finding the true self, takes a lot more time and energy.

As I enter each session I consider becoming an empty slate, open to learning the way a young child hears new words, sees different faces,  flowers, and birds, and then pauses to admire smelly dog poop. Discovery transcends borders. The beautiful and the ugly live together and can’t be separated for convenience.

All I need is the willingness to admit that I still have a lot to learn, and that ignorance is okay—more than okay. Then I can plunge into life and embrace wholeness. One adventurous moment at a time. Although I have to admit, Mr. Socrates, not-knowing doesn’t always feel like wisdom at the time.

becoming PIQ

 

 

 

 

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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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Wherever you are, be there. Lifestyle is not something we do; it is something we experience. And until we learn to be there, we will never master the art of living well. (Jim Rohn )

My husband’s ribs are healing slowly. Of course we can’t see the bones as they knit together. The slightest extended movement predicts a return to our normal life. Sometimes that improvement appears to move in geological time. I’m encouraged when Jay smiles at something as silly as an old F-Troup or Hogan’s Heroes rerun. That means he isn’t hurting at the moment.

Then, somehow, my added tasks feel less like work. Since my father once told me he wanted me to take a mechanical aptitude test to see how low a score I would get, it’s amazing that I am now leveling the wash machine and plunging the toilet. (Please note I prefer the former task to the latter.) Perhaps these accomplishments have come as side effects of my husband’s accident. Chances are I wouldn’t have attempted either job if I had someone with a strong arm and intact ribs close by.

However, I can’t give the impression that I’m bouncing from moment to moment with the serenity of a saint. And I don’t drink alcohol or use drugs so I’m not drifting in avoidance land either. Sometimes fatigue and the impossibility of bi-location attack me, and they can lead to a bad attitude the way black ice leads to the fall that initiated this situation.

Friends make a difference between finding balance and slipping into why-me or super-stress land. One friend, Marcia, helped me to soothe my soul back into my body through massage. Since I was concerned about leaving my husband for any extended period of time, she brought her magic table to my living room. I am blessed.

One of the gifts Marcia gave me was  the ability to focus enough to appreciate the now. I allowed myself to float into her care. I trusted her implicitly. After that relaxation I could consider trusting me, my own body and soul, my ability to fill my spiritual larder so that I had enough stored to give to someone else. While this notion should seem obvious, it isn’t the first thought of a girl brought up in the 1950s, where the female’s giving role was often skewed. In the popular “Christmas Story,” overplayed in December, Ralph’s mother is expected to be subservient to her husband. That position is not questioned. Sure she thinks the leg lamp is beyond tacky, but it needs to crash into smithereens before she can admit it.

I want to be present to my mate—as a choice, expressed in a continuous now. Who knows whether or not he will need to care for me some day, in a far more difficult situation. There is no sense to speculating about the future. This afternoon the sun has decided to make an appearance again, for a while. Every cell in my body has been enriched by Marcia’s loving skill, and the next post will probably be a gift from someone else—my first guest blog. Watch for it! This woman emanates positive thinking. In the meantime, peace to all!

enjoy little things words of wisdom

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We must stop regarding unpleasant or unexpected things as interruptions of real life. The truth is that interruptions are real life. (C. S. Lewis)

I spill grease all over the kitchen floor and sigh. Sure, I’d like to blame some external force, but my hurry caused the problem. I’m on 24-hour duty right now, and a shift change isn’t likely. My husband fell when he went outside to get last Sunday’s newspaper. The first few steps were wet, no sign of ice. The last one, however, threw him as if he were a discarded rag doll. However, rag dolls don’t have bones. Jay fractured four ribs. Four very painful ribs. The healing process will take months. In the meantime I am his right-hand-left-hand-everything-that-requires-movement woman.

One day this will be part of the past. It isn’t. Yet. It’s miserable. But, that doesn’t mean a lot of goodness hasn’t appeared along the way. Perhaps it’s the length of the relationship I have had with my husband, or perhaps I simply don’t sleep deeply anymore, but I tend to be at least half-awake when Jay needs me during the night. We are both learning as we go; it’s an awkward dance. Neither of us is ready for Dancing with the Stars, except perhaps in some comedic form. However, we aren’t important enough to be mocked in a routine, even on a local circuit.

Our first moment of gratitude came when Frank, our neighbor, shoveled the snow from our driveway with his snow blower. Then he cleared our sidewalk as well. When we had an appointment with the orthopedist on Monday, he led Jay to his car and drove. Our Toyota is much too low. That was not the end of Frank’s assistance. I know he will be there if we need him.

Missi, another neighbor, brought beef barley soup and has kept close watch on us. Several people from my church have offered to stay with my husband so that I can breathe air outside this small house. Other neighbors, Eric and Crystal, helped carry my groceries into the house and return our garbage and recycling bins after pick-up. Our sons are always present. Steve is working on a way to raise the level of our couch.

Yes, interruptions are real life—and they can hurt, take up valuable time, and make me angry at fate. I realize Jay could have hit his head on a concrete step. Awful could have taken endless forms. I’ve heard many stories that had no possibility for a happy ending. Each day is precious.

When the blessings appear, even simple ones like a card in the mail from a church member, I know diamonds are born from compressed coal. Friends let the sparkle show through a little bit early.

struggle part of the story

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