Putting the special in Olympics

I hate skiing. I really do. I don’t like the cold, the snow or the clunky equipment.

Still, some eight years ago I brought Sam up to Wachusett Mountain to attempt skiing with Special Olympics. I was hoping he would hate it. I could say we tried and move on with my good mother halo intact. 

He started by getting a feel for the equipment. Boots on and skies snapped into place, Sam intuitively bent his knees and found his center of gravity. I remember saying, "Hey that’s great, enough for today. We’ll come back another day." But Sam looked up at the big mountain, “Want ski!” That isn’t the kind of statement you can ignore. Particularly when it comes from a kid who barely talks.

That began eight years of the mad Tuesday night dash to Wachusett Mountain where Sam worked with wonderful volunteer coaches like Melissa, John and Dave and in earlier years, Maureen, Lynn, Kevin and Ken. Each taught Sam something important. With their help Sam quickly progressed to the chair lift. I remember the first time he fearlessly skied down the mountain sporting a grin encompassing his entire face all while reciting, “Green Eggs and Ham.”

Everyone cheered. So we continued.

Saturday we completed our eighth finals at Wachusett with teams from all over the state. The waiting room was noisy, confusing and congested with people: your basic nightmare for a kid with autism and lots of sensory issues.

Somehow Sam rose to the occasion, displaying a tolerance he typically can’t master. He patiently waited in the start position at the top of the hill for over 30 without loosing his cool. He cheered through endless awards despite the background din of a few hundred people and the reverberations of a noisy microphone.

I mentioned to one of the other moms at the beginning of the finals that Sam really didn’t care about the metals or winning. We participated for the weekly ski practices. But I watched Sam as the day progressed and I saw something different. I saw tolerance and perseverance. I saw pride.

It is true Sam wouldn’t mind if everyone in the room got a medal except him. It wouldn’t even slightly dent his self-esteem. But that isn’t to say he doesn’t like metals. 

This year he won three. A bronze, silver and finally a gold. Each time he went up to retrieve his medal he stood on an increasingly higher pedestal. Each time he smiled more broadly.

By the third trip up he glowed. 

To every coach, volunteer, mom and dad who offered kind words or an encouraging smile over the last eight years: You’ve converted me. No, you’ll never see me anywhere except the base of the mountain, it’s true. But you have made every trek to the mountain worthwhile. 

I can’t thank you enough. 

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.

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