Wednesday, September 28, 2011

Hope, denial and lotteries

When Sam was three the neurologist told me in a blunt, matter of fact way he would never catch up.  “Are you sure?” I asked. “He is barely three.” “Quite sure,” I remember hearing. “When a child presents this delayed the odds of catching up are one in one hundred.” 

One in one hundred. I remember dead quiet. I remember thanking her though I wasn’t sure why. I left for home, put Sam down for his nap and then I cried.

When he woke I looked into the trusting dark eyes of my beautiful boy and knew I couldn’t bring myself to say the words I’d heard out loud; not yet. I needed time to wrap my brain around the complete dissolution of the life I had planned for Sam. 

I prayed to God – any god – I would wake up with only the vague memory of a bad dream. I wondered what to do.

Around this time, I began to hear comments like “she is in denial” and inevitable the whispers that follow, “someone needs to tell her there is something wrong.”

Yes, I know, I thought.

But what was the protocol for news like this? Do you shout it from a rooftop? Send out announcements? I grew to hate the word “denial.”

And though I didn’t speak of this to anyone, I remember my meeting with the neurologist as the day I was handed my lottery ticket.

It was also the day I began to focus on one percent and what it meant. I started to think about hope and denial and metaphors. And so to anyone who has ever used the word “denial” I offer up the following:

What if you were offered a free lottery ticket for a Mercedes and the odds were one hundred to one of winning? You would likely take the ticket. You might fantasize about winning or the color of the car. Is it a convertible? Will I keep it or sell it for a bundle of cash? Is there room in the garage for it?

All of those thoughts, they are hope. You don’t build a garage for a car you haven’t won. That is denial.

With hope, I accepted my ticket and found the courage to slowly redefine our life. I found programs and therapies and for the most part, met wonderful people. I got through the early, difficult days by dreaming about the one percent. I began a college fund, knowing the money might never be used that way. And though I desperately wanted to build a garage for all the meaning it carried, I didn’t.

With the help of caring friends, I discovered the joy in simple things like playing with the kids on the local playground and hearing, “Hi Mommy.” I learned to question the definition of success and failure.

As time passed, I thought about the lottery less and less until I didn’t think about it at all. One day I realized the drawing had taken place some time ago. While I didn’t think I’d won, I wasn’t sure I had lost.

As for the lottery ticket, I still have it. You never know when someone might need a little extra hope.

Friday, September 23, 2011

Our friend Shrek

This story is inspired by Kristen and her recent blog about castles...

We are a Shrek kind of household. Through the use of a TV, laptop, iPad and iPod, we can simultaneously view the entire Shrek franchise, versions 1 through 4, resulting in an efficient mishmash Shrek marathon with a very peculiar story line.

On really special occasions we watch random parts of Shrek II while Sam recites Shrek I in my ear, an experience I can only describe as surreal.

And then there is the Shrek music, but that’s a story for another day.

I guess you could say we border on a Shrek obsession. It was through this obsession Sam finally found a kindred spirit.

Shrek is a big, green, misunderstood guy who is disgusting, loud and prefers a solitary life. This is an apt description of Sam as well – right down to the green undertones of his olive complexion.

As it often happens through friendships, Sam was introduced to his ideal mate. Yes, Sam loves Fiona.

Her allure is undeniable: she is a princess with a castle, a kingdom, and many servants. She is also blessed with a powerful ability to belch. Since I do not have a castle, kingdom or any servants, and have been known to discourage bodily noises of any kind, I have been replaced.  It is simply impossible to compete with royalty that belches.

Yes, there are obvious cultural considerations. She is, after all, an animated character. But I’ve seen many relationships with cultural differences work. And, if she makes Sam happy, I will learn to put up with the incessant burping.

Hey, maybe I’ll get to live in a castle. You never know. 

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Friday, September 16, 2011

I believe

The holiday season was fast approaching. I mentally organized what I hoped to accomplish that night: First, the Christmas cards to those who had worked with Sam in the past year, then package their gifts.

The cards were already selected: simple and white with a small Santa engraving – whimsically elegant with plenty of white space for Sam’s large scroll. The stock was both heavy and soft to the touch. I had chosen the cards envisioning the juxtaposition of elegance and Sam’s childish script.

I laid out the cards and like a drill sergeant directed Sam to sign them, “Love, Sam.” I was surprised by his unexpected protest.

“Want write. Want write,” he insisted. Translation: he disagreed.  I groaned and thought, he is going write “underwear” all over my beautiful cards. Sam had been obsessed with writing “underwear” for the last few weeks. I was certain today would be no different. More firmly I said, “Just write Love, Sam”.

Again he refused. Looking to compromise, I found a piece of blank paper and said “OK, Sam. Write whatever you want here and later we will sign the cards with just your name.”

Sam accepted this and picked up his pen. I watched in surprise as he slowly and carefully wrote:
Sam looked up and said firmly, “Want write believe.” Taken aback, I asked, “Believe what, Sammy?” He responded emphatically, “Believe.” BELIEVE!”

A little humbled, I thought: Believe in God; believe in Santa Claus; believe in Sam. Believe in miracles. Whatever it is you believe in, just believe. It was a perfect a message. Within the subtext was an important reminder: never assume because little is said there isn’t something worth listening to.  

Somehow this story is incomplete without a fast-forward to 4:45 AM the next morning when Sam greeted me with an evil and boisterous, “WAKE UP, TRASH!”

I truly hope that greeting had more to do with his pal Oscar the Grouch and less to do with his general opinion of me from the prior night.

I believe I’ll never know.

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Friday, September 2, 2011

A Day at the Beach

I sit on the beach watching as Sam as he rhythmically bobs up and down in the waves. The sky is blue, the surf impressive; the perfect day to body surf. Sam is not alone. The ocean is full of swimmers on this hot, sunny day. There is nothing remarkable about Sam or the day. He looks like any other teen enjoying the surf on any summer day.

The rhythmic pattern continues for fifteen or so minutes. I sit, relaxed, enjoying the visual order of it all. 

Without warning, an aggressive wave takes hold, pulling most of the swimmers under water. Within a moment, they all pop back up, briefly wipe their eyes and continue their rhythmic bob in the surf.

Except for Sam.

He runs to the shore, eyes shut, aggressively shaking his head, reminding me of my childhood Shepherd. As he gets closer, I hear “I need a towel please, I need a towel please,” growing louder. The voice inflections are identical with each recitation.

He doesn’t quite remember where we are sitting or take much care to avoid neighboring blankets as he searches for us. “I need a towel please, I need a towel please.”  

“Sam” we call. “Over here, over here." He heads our way, showering those he passes with water droplets from his still shaking head. Folks nearby give a sideways glance, some with discretion. They wonder about this boy.

Sam is focused on drying his face. Mission accomplished, he drops the towel, shouts a few random, unrelated words and gleefully leaps back into the water. The rhythmic weaving resumes. And so our afternoon goes.

As the day progresses, I notice some of the kids have joined together, making new friends. Sam bobs near them with little notice. The kids glance at him, managing to keep separate. They sense a difference. He is not destined to become one of the new friends today. 

I am sad for a moment, but my focus soon returns to Sam’s bright face and his exhilaration riding the waves; his jubilant smile and complete joy. I smile too as I pick up his towel and ready it. 

All is right with the world once again. At least right now.    

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