Tuesday, January 29, 2013

A Little Extra Oomph

Charley and Miss Gerry

It’s Monday night, and I’m struggling with writing. All writers will tell you they sometimes stare at the blank page for what seems like forever, and that’s what I’m doing. Or, at least that’s what I was doing, until I received a text about ten minutes ago.

     Charley’s an easy subject for the most part. With his shenanigans, his laugh, and what we call his bullheaded chromosome, he’s anything but blank. But when he’s gone my oomph goes with him.

     You see, Sunday he boarded a bus and headed to the winter games of the Special Olympics in Gatlinburg. But back to the text – oh how I needed it, because there, on my cell phone was a picture of him, standing on the ski slopes with his teacher, Miss Gerry.
     He’s temporarily ditched the grey muscle-man shirt he lives in and is sporting a red hooded sweatshirt like the rest of the team.
     He’s wearing brand new jeans that bend in all the right places when he unleashes his dance moves that make him look cool on the dance floor. He’s put on aftershave to give him some oomph, even though he didn’t shave before he left. But most of all, he’s wearing a grin and a twinkle in his eye.

     He’s staying in a hotel room and partying the night away. He’s probably meeting a girl but will most likely forget to get her phone number and will arrive home expecting that we will magically know how to call the girl he now refers to as his “Purty.”
     It’s all because of Special Olympics, created by Eunice Kennedy Shriver in her back yard in the late 1950’s and early 1960’s so that her sister Rosemary would have a place to play. I wonder if she knew that somewhere in Gatlinburg nearly 63 years later, a man with intellectual challenges would be having the time of his life because someone saw past disabilities into the core of abilities.

     Someone envisioned a better way of life for people like my Charley. Someone looked around, counted her blessings, and showered others with opportunities. Because of Eunice Kennedy Shriver, he is running, lacing up a pair of ice skates, and hanging onto the handlebars of the walker-like support device that steadies him so he won’t land on his backside. But so what if he does? He’ll think of himself as a winner because he had the courage to put one foot in front of the other, and try.
     Fascinating, how a traditional team practices until they are ready for the big game. Only a select few get to run out onto the field to the roar of a thundering crowd. Over and over, they practice their moves; fine tuning their technique that will make them legends in their arenas.

     Special Olympics practices too. They practice patience, support, respect, encouragement. Somewhere in Gatlinburg, there are teachers and coaches who have taken time out of their personal lives to make the Special Olympics a reality for someone else. While their own families are at home, these individuals provide hands-on assistance to the participants, so that life can have a little more meaning. No one makes them do this; they do it out of love for their students, so they can be included. So they can have their moment. Their thundering crowd. Their arena. A little extra oomph.

     If you know of a teacher or coach who has given so much of themselves for these special athletes, take a moment won’t you, to thank them on behalf of all Special Olympians everywhere.

     Tell them Charley sent you.

Charley and his buddy, Mike Sowards 


Wednesday, January 23, 2013

The Dream Team


         The last time I saw Charley compete in Special Olympics, he was standing in the middle of a volleyball court crying. Not because he didn’t win. Everyone’s a winner at the Special Olympics. It’s about standing shoulder to shoulder with your fellow teammates, and mostly, having fun.
He was excited that day, putting on his official Special Olympics T-shirt, and he would have had a good time too, if I hadn’t fouled things up.

I can’t always go to his Special Olympics events, but that morning he put his arm around me and said, “Mom, you comin’?”

            I started to blurt, “I can’t. I have to work.” But the fact is, I didn’t have to work that day, so, Brad and I were there to cheer him on.

As we entered the gym he came running up to us. “Guys, dis my Daddy, dis my Mom,” he grinned and pointed us out to anyone who would listen. I don’t know who was prouder, him or us.

            Brad and I made our way to the bleachers and sat down, when moments later one of the coaches suggested we move.

“You can’t sit here,” she said, “Families sit in the upper level out of harm’s way.”

Even Brad pleaded with me to move to a safer seat, “Let’s move to the no kill zone,” he said.

But I had picked my spot and wasn’t about to budge. “I can see better here,” I insisted, when, five, four, three, two, one. BLAM. A volleyball right in the kisser. After that, the only things I was seeing were stars.

My face was bleeding, my nose was smashed, and my lip was cut. I tried not to cry as Brad escorted me to the hallway and helped me find the ladies room where I wiped my face with a wet paper towel and collected myself.  I considered leaving and going home. I couldn’t see the game anyway; my glasses were a twisted mess. Besides, I didn’t want to embarrass Charley any more than I already had. But Charley wouldn’t understand if he looked up and we weren’t there, so we went back to the gym.

            As I opened the door I expected to see a volleyball game in progress. Instead, what I saw was something I’ll never forget. There, in the middle of the floor, beside the volleyball net, was my son, surrounded by not only his team, but the opponents as well. He was crying, and his buddies had turned their attention from their own moment of glory to make sure Charley was okay.

I walked over to him and he threw his arms around me and cried some more. I assured him that I was okay, his teammates slapped him high-fives, the excitement returned, and the game resumed.

            I learned several things that day. First, if you are going to bend the rules, you might end up being the one who’s bent. Even Moms are supposed to respect boundaries. Including me.

Second, there’s a reason they call it Special Olympics.  It’s called sportsmanship and there’s so much more to it than beating the other guy. It’s all about the dream and the team. The dream to be a winner, and the team that loves the sport, but more importantly, loves each other.

Above all, it’s about helping a teammate find his smile so he can get back in the game. Because when you help someone else win, you win too.

And third. Isn’t it ironic? Those who are often considered the least of us because of their special needs are often the ones who teach us the most.

Wednesday, January 9, 2013

One Flu Over the Season

I have this thing about not eating in restaurants during flu season. I don’t care what anyone says, it can’t be healthy. How could it be? People come to work whether they are sick or not. It’s the corporate way. Feeling a little body slammed? Coughing your guts out? Holding your stomach? It doesn’t matter. Who cares? You don’t get paid for staying home. 

What does this mean for the rest of us? It means that if we eat out, we eat whatever bug they are serving. We know this, yet we open the menu, as if somehow we are immune to the latest string, and I don’t mean potatoes. And it doesn’t help when the server comes to the table and says, “I’m sooooo sick.” This should be our first clue to run. But that wouldn’t be nice, so we order the omelet and watch as the server sneezes.

     Time to get our coats and make a hasty exit. So what if the server is verbally warning us that she’s about to croak in front of our very eyes? So what if she looks like she’s been punched in the nose, and her eyes are swollen, and the manager from you-know-where doesn’t seem to notice? How sick can she be? The establishment wouldn’t let her wait tables if she was that ill. Would they?

      Still, from the looks of it she’s been wrestled to the ground by mucous monster. We've got to save ourselves. This is difficult to explain to Charley.

“Let’s go Son, we’re eating somewhere else.”


      “The server is sick. We don’t want to get what she’s got.

      “Yes I are,” he says. And why? Because he sees the server heading to the table with chicken.

      “Honey, the server has some kind of bug.”

      “No not, Mom, her got kicken.”

      “That’s not what I mean, Son, we don’t want to get the flu.”

      “I stayeen.”

      “We are NOT staying, now get your jacket.”

      “Eat.” He points to the food. “I hungwee. My belly growlin'.”

      Brad and I look at each other. It’s decision time. Stay or go. It’s just one dinner. Besides, she’s already set the plate in front of him, achoo. 

      If you know anything about Down Syndrome, you know only too well that once they’ve got their mind set, that’s it. At least that’s how it is with our Downs. Flexibility does not enter into the DNA. That, and who wants to go out in the cold only to head to another restaurant where some other server probably has the flu.

      “Looks like we’re staying,” Brad says.

      Oh, what can it hurt?

      Surely not everyone who eats at this restaurant gets sick, so pass the ketchup, and get out of the way.

      And with that stupid decision, we caved. The food wasn’t too bad, although anything would have tasted good as late as it was. But what the hay, we had full stomachs. It was a perfect ending to the day. Except for one thing. And this is where I won’t go into specific detail, but let’s just say there are worse things, but I don’t know what. Charley’s flu bug totaled 4 days. I’m on my 5th.  Thanks waitress. Thanks restaurant. Thanks stupid decision. Cherry flavored Kaopectate anyone?

      Even so, as I write this it occurs to me that even the flu can have it’s upside. First, I’ve lost six pounds. Second, Charley makes a pretty good nurse. He’s covered me with blankets, put pillows behind my head, brought me the phone, put the cat in my lap so I don’t have to suffer alone, and cleaned the house without being asked. He’s kept his TV turned down, and delivered ginger ale where I sit, and kissed my forehead.

      Come to think of it, maybe we should eat out more often.


Wednesday, January 2, 2013

Anything but Simple

Anything But Simple

All children surprise you, and those with Down syndrome are no different.

            I have to admit that being the parent of a special needs child, I’ve often fallen into the trap of thinking that Charley is too simple to understand as much as he does.

            For one thing, he has no idea why there’s a big deal made of celebrating New Year’s Eve. Charley has no concept of time. To him, New Year’s Day is simply another day. While the rest of the country sits in front of the TV watching the crystal ball fall and then plants good luck kisses, he sits in front of the TV in his room watching The Lion King, clapping and singing in his tone-deaf way.

            It’s always somewhat of a shock to look a new year in the face and wonder where the old one went. And yet, just as soon as it began, it’s gone and another takes its place.

            It’s shameful, I know, but the holiday I looked forward to most this year was New Year’s Day. Anything to get past Christmas and put 2012 behind us.

You see, we said goodbye to Dad this year. After a year of struggling to stay with us, he finally left us in June, and by the time Christmas knocked on the door, Dad had been gone for six months and this would be our first Christmas without him. I’ve often heard the first is the hardest. All the way to Louisville (Kentucky), that’s where we are from, I wondered how I would make it through Christmas without seeing Dad with that grin, hugging me and standing back to take a good look, saying, “You’re lookin’ good, kid.”

Dad was the one who made the house chuckle. His hearty laugh filled the room and if there was any fun to be had, he wanted to be right in the middle of it. How he loved every part of the season, especially the candied apples at Christmas dinner, and having the family all gathered in one spot. I didn’t want to see the house without him or open presents without him. But I did. We had a nice family gathering despite the loss, and Dad’s spirit was felt among us.

The next day Brad, Charley and I went to the gravesite to wish Dad a merry Christmas. I hadn’t seen the grave marker yet, and since Dad couldn’t come to us this Christmas, it seemed only right that we go to him.

But first, a visit to the grave of my friend Barbara’s mother. Barb and I grew up together, and since she is now in Pennsylvania I visited on her behalf.

            It was awkward at first. I wondered how Charley would deal with it all. Would it freak him out? Would he run back to the car? Or worse, run through the cemetery? Charley has a way of doing things like that when something spooks him.

Who knows what he was thinking? After all, he never met Barb’s Mom. I was surprised when he didn’t ask questions; rather, he went with us and waited quietly while Brad said a prayer. As I stood in the cold at a loss for words, Charley showed us another way. His way.

You see, he simply leaned down and kissed the tombstone.

            Next stop – Dad’s resting place.

            Once again, there were no words. Only the three of us, and as we huddled together, I zeroed in on the American flag placed on the grave.  Dad was a patriot, a proud testament to uncommon valor, and a member of the greatest generation, as the journalist Tom Brokaw refers to it.  Anything but a simple man.

And there, once again, standing beside me at the grave of his Grandfather,  his “Grobbie,” was a twenty-two year old man, who, because of his Down syndrome, most would consider simple. But they would be wrong. Because this time when he leaned down and kissed the tombstone, he had tears in his eyes.
And from where I’m standing, that’s anything but simple.