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Posts Tagged ‘courage’

“Generosity is giving more than you can.” – Khalil Gibran

Most of the traffic lights on Main Street still flash yellow as Dad drives my sister, Mom, and me to the hospital this Monday morning. April 6, 1998. There was no need to circle the date on the calendar. We haven’t been able to think about anything else.

Dad offers to stay with me while I get ready for surgery, but I tell him, “I’ll see you in the Recovery Room.” I’d kind of like to be alone right now. Not sure why.

He nods without looking at me. I think he gets it. Dad can be cool. My mom’s got easy-trigger tear ducts. She is going to need Dad more than I will.

 After all the preliminaries I shiver in my faded brown gown. It’s designed for mooning between the tied bows. I pull a blanket to my chin and close my eyes, but they refuse to remain closed. They stare at the ceiling. It’s bare, sterile, and covered with pocked tiles. The walls are a dull green, the kind only a Sherlock Holmes would consider remembering. Nothing like my room at home. My entire ceiling is covered with posters: Cincinnati Reds and St. Louis Cardinals, Globetrotters, Frank Zappa, and The Simpsons. I even have some old Scooby Doo cartoon stuff. Mom doesn’t care for my design plan. She thinks it looks cluttered, like everything else in my room, but she tolerates it.

 My dresser is covered with football trophies. In the center is a framed picture of my sister Leah and me on vacation last summer. No girlfriend’s photo. Not yet. Sure, I play sports, so people assume I have dates all the time, but as soon as a female classmate says hi, I lose every bit of saliva in my mouth. I’m useless.

 I get up to go to the bathroom—more to move around than any real need. The clock seems to be moving in geological time. My toes touch an icy floor.

My privacy feels invaded as the flush echoes into the hallway. As I wash my hands I frown at my baby-round face and blotchy field of dark freckles. A stranger would never guess I’ve been seventeen for three months now. Funny, though, I never realized how much my eyes look like my sister’s, small and pale, kind of green and kind of blue.

 I’m crazy about my younger sister, Leah. No doubt about that. But we’re not that much alike. I’m a redhead, with too many freckles for my face, and she’s so blond and pale she could fade into a sheet. She’s barely twelve and would rather read than anything else. I’m not anti-intellectual, but I prefer to weave and run on the football field.

Mom says I charge through whatever I do as if I had only one chance to grab the ball. I tell her that born leaders act that way. She doesn’t always know when I’m kidding. She should lighten up now and then, but I understand why she’s so worried all the time. My sister is so sick that I lose count of how many times people ask how she is.

 Dad worries in a different way than Mom does. He gets sullen and simmers. Then when I’m spending a rainy Saturday watching TV, he asks me what I plan to do with my life. I pretend not to care, but I’m not really that great at anything, and I can’t tell him that. Especially not when he’s in one of his moods. He shakes his head and then goes in to check on my sister. I hear him talking to her about how well she did on her science test after she missed half the term. He talks loud enough that I’d have to be beyond stupid not to know he’s really talking to me.

 I barely passed Biology last term. That means a brain surgeon career is out. I could go for history, at least the way Mr. Riley teaches it. He’s an American History buff.

Once he said, “Abe Lincoln didn’t like dressing up. He’d take off his jacket, pull off his boots, and stretch his toes, whether there were visitors at the White House or not. And there is a reason why I’m telling you this.” He unlaced his shoes and slammed them on the desk. “That doesn’t have a thing to do with the founding of Virginia, but these are new shoes and my feet hurt. I figure if Abe can do it, so can I.”

The whole class laughed. I’d like to be cool like Mr. Riley. But I’m not sure I can teach people who don’t want to learn. There are a lot of kids like that at my school. Heck, I wouldn’t want to try to teach somebody like me.

I wonder if Grandpa Myer was a good student. He served in the army in World War II in bomb disposal. I can see him in the old stilted-frame home movies, his khaki uniform turned to gray on the black-and-white film. Of course, when I ask him what it was like when a bomb started ticking, he says, “Courage doesn’t come pure. It comes wrapped up in a lot of very smelly stuff.”

I want to tell him not to talk to me as if I were a six-year-old baby, but Grandpa always asks how I’m doing, no matter how weak Leah may be, so I let it go.

Heroes intrigue me, of all kinds. There was a time I imagined being on the cover of “Sports Illustrated.” I wouldn’t admit it out loud, but I had my front-page pose planned in my parents’ full-length mirror. Last year I dislocated my left knee in a game early in the season. That knee hurt like crazy. Sometimes it still does. Mom doesn’t want me to play at all.

Almost cutting time. My mind has been doing cartwheels. Now my stomach is doing them. Come on, David. It’s not like you are afraid of the dark or anything.

Sometimes Leah likes a night light. Kids her age tell ghost stories with flashlights aimed at their chins. But then Leah has spent a lot of the last few years in the hemodialysis unit. Three days a week in a narrow, blue vinyl chair, with the machines, thick needles, and tubes, her blood thinned with heparin. I sat with her and read stories with her for hours, the smell of insulin and something antiseptic stuck in my nostrils.

I have never understood why my smart sister acts like her C-student brother is the greatest ever. She’s always asking for me. When I tore up my knee that time I didn’t cry much. She cried for me. Last summer I stayed the whole four hours with her when she had dialysis. I got to know the health techs and nurses. They joked and talked with me as much as they did with her. Sometimes Leah’s potassium level would get too high. The doctor would order kayexalate with sorbitol from the pharmacy STAT. That would help, but at other times she needed an extra day of hemodialysis. Then she would cry and I would fume. I know every inch of the dialysis unit, and I’ve learned a lot about kidney disease.

But the fact is, I never got used to the routine.

Yeah, Leah’s special all right. Maybe I’ll make her proud of me for real someday. I’ll tackle my study phobia and get a job in research, at a miracle place where intense studies eliminate kidney disease, make the common cold less common, cancerous tumors antiquated, and bloated fat cells a thing of the past.

Right, what a rich fantasy life you have?

An orangish pink is washing over the darkness outside. I see it through the window. A woman pushing a portable X-ray machine passes my door. Voices in the hall rise: “Hey, Kelly, do you have the med-room keys?” “Lifting help in Room 11.”

Somebody in blue scrubs writes something on my chart. He looks at me and smiles. It’s funny. I know this operation is a big deal but the thing I’m worried about is that first needle stick.

My lab results are on target. Leah is ready. I’m as ready as I’m ever going to be. I slide both hands over the warm trunk of my body and picture the charts the doctor showed me, full-color glossy pictures. He showed me something like a map of what was about to happen. They’re cutting Leah from the front, someplace by the groin; if something goes wrong, they can get back in easily, not something I want to think about. Because they’re cutting me through the back, the doctor told me that I will take longer to recover than Leah will. For the first time, I realize those pictures were flat and superficial, the difference between viewing Italian travelogues and visiting Rome, or checking out pizza ads and taking a good solid bite of double-cheese pepperoni.

I nod to the man in blue scrubs, gulp, and then smile. Mom and Dad are with Leah right now. I’m going to be fine.

Oh well, whatever happens, here’s to you, little sister.

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Dandelions, like all things in nature are beautiful when you take the time to pay attention to them. (June Stoyer)

Good afternoon, human. I’ve been awake since early morning, grateful last week’s pesticide spray missed me.

Sure, I’ll pose. There are tulips on the other side of the sidewalk. Red. Yellow. I noticed you didn’t stop to admire them. You knew people in the eighteenth century preferred my ancestors to mowed grass. Nice research. I am hardy, rise early, and sleep late. I appreciate the compliment.

Wait… Don’t leave so quickly. I’d like to play mirror with a homo sapiens for a minute. Because…because you are thinking about people who are important to you. One woman was beaten when she was a child. She needed to be rescued. Yet, her spirit shines brighter than my yellow surface.  Her giving is honest.

I talked a bit fast there. But I wanted to get a lot of stuff in. Strange, isn’t it, how some creations flourish where others dissolve with the next temperature rise? Not a judgment, just what it is. An orchid is in trouble when its leaves get too dark. Can’t change that in a human either. However, the human has more sources for support. Physical. Mental.

You didn’t expect that much from a plant, a flower, this ordinary, did you? Even you have your stereotypes. I hope to see you again after the next mowing. Keep your eyes open. Thanks for the chat.

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Courage doesn’t happen when you have all the answers. It happens when you are ready to face the questions you have been avoiding your whole life. (Shannon L. Alder)

The summer of 1963. I’m at a journalism workshop in Detroit to prepare for a position on my high school magazine. And I have a date. Other pre-seniors, a group of at least six, give advice about makeup.

“More eyebrow pencil. They look pale. Lost.”

A description of how I felt. Strange. I had a date. With a guy I’d just met. Not the love of my life, but someone who would introduce me to a fancy restaurant and frog legs. Yet my memory of the moment says I wasn’t enough.

Today I look in the mirror and see one red, irritated eye. The itching is a unique form of torture and I am grateful for antibiotic drops. Pink eye is temporary. Human frailties are not.

I have survived adolescence by now. However, what is this thing in me that says rest must be limited? Does laundry really need to be done, now? I need to type even when the letters could be more fog than print. I take a break, a short one. Maybe not-good-enough has morphed through the years. Soothed with action.

The new year begins. May I remain open to change, especially if it doesn’t seem easy. Time to focus on the real. And grow inside both joy and turmoil.

 

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Successful people keep their eye on the goal. If they encounter obstacles, instead of focusing on the obstacle, they find a way around it by keeping their goal in mind. It is a mindset of courage which makes it easier to pursue success. (Dr. Anil Kumar Sinha)

Meet Diane Grover, mother of five, a beautiful person inside and out. Diane founded the International Down Syndrome Coalition. She also started the Grand Strand Down Syndrome Society. Now she has created Dreamers Merchants.

This is no ordinary business.

Most employers look at appearances when hiring, even if that bias is subconscious. Somewhere between 17% and 20% of people with disabilities are employed. Diane’s mission is to change that statistic. She does more than hire—she gives these individuals a living wage and recognizes their dignity. In Diane’s blog, Cheerful Persistence, September 2015, she celebrates the definition of dignity.

I applaud people who realize that dignity is innate. It is not the exclusive property of the genius, the wealthy, the gifted, the privileged… In fact, sometimes the educated individual teaches biased info. My friend, Bethany Brianne Hall, helped to clarify some of that misinformation with one of her college professors.

“Genetics and Statistics show that all people with Down syndrome will not attend college. It is nearly impossible for them,” he stated in the context of his lecture.

Bethany did not sit still and fume. She responded with statistics. After class. Bethany was fortunate. Her prof heard her out.

“Do you know who Angela Bachiller is?” she asked. Knowing the question was rhetorical, Bethany continued. “She was the world’s first person with Down syndrome to hold public office. She lives in Spain. Tim Harris owns his own restaurant. And Sujeet Desai, a musician, went to college. He earned a 4.3 average. These are only a few examples.” Bethany suggested that he update his statistics. Perhaps if she had appeared confrontational in front of the other students he may have been defensive. It is hard to say in hindsight.

Then she shared her experience on Facebook. I smiled the width of my face. Perhaps wider. The links in the previous paragraph lead to these persons’ stories. Desai mesmerizes an audience with his music. Tim dances his way to his restaurant. Angela Bachiller’s photo shows a woman either patronized or ignored in public settings. Wrong! She is a public leader and servant.

I smile again now. Diane Grove is destroying the myth that the handicapped are poor workers and less-than individuals.

Di’s youngest daughter, Mary Ellen, has Down syndrome. She calls herself ME. Me! The same pronoun we all use to refer to our inner selves. And that self is incredibly beautiful—no matter how many chromosomes it carries.

Seven of Diane’s Dreamers Merchants stores opened on October 5. There are now eight stores. Freshly ground coffee can be ordered online. A great gift.

“Maybe, just maybe,” Diane says, “the world is hearing us.”

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