Turning off the silly switch

Special needs is all up in my face this week.

A co-worker asked me about the chances of Scott and I having another baby with special needs if we were to get pregnant again and I very matter-of-factly told her that the chances were higher but that it didn’t matter.

“This is the only type of parenthood we know,” I answered with a shrug. Because really it doesn’t matter anymore. We’re over the shock and confusion, the hurt and the anger. All we know is this beautiful way of life we’ve been given and we’ve accepted.

*   *   *

But hard as we try not to focus on Down Syndrome or worries about the impact some so-called “special” needs has on us, other times it just smacks us over and over again.

 

Zack and I were invited to a Mommy-and-Baby playdate with some friends this afternoon, but had to turn down our invitation. You see, The Dude has a therapy this afternoon and so I need to manipulate his schedule just a bit so that he gets in a good nap before Miss Sheri visits to work with him on all of his skills. As much as I’d love to see Zack and all of his little friends splashing in a baby pool on my day off, our entire Zee Family Team needs to make sacrifices now to provide better possibilities in the future for the little big guy.

 

 

And there will be more playdates. With friends who don’t segregate, don’t judge, don’t worry, don’t fear.

 

 

 

*   *    *

 

 

 

 

 

My most recent purchase wasn’t a new outfit for work or a cute pair of shoes. It wasn’t an item for our house to-do projects or a gift for a friend. It was a Baby Sign Language book and flashcards. Scott and I spent a good 20 minutes performing a funny skit for our a Mom Friend the other day, and while we were all cracking up, in the back of my mind, it was yet another reminder that putting my hand to my mouth to signal “eat” at mealtime or stroking pretend whiskers on my cheek when a cat walks by is yet another small way I can help my son.

*   *   *

 

 

In my most pitiful moments, I watch people’s faces at work as I show them photos of Zack. Have I told them about DS? Can they see it for themselves? Do they feel bad for me?

Do they feel bad for Zack? Oh please no, no, no.

*   *    *

 

 

Sometimes “special needs” just surrounds us. We can’t escape and we aren’t looking for it.

Yesterday was Scott’s first Father’s Day and my heart felt so heavy all day, even hours later while I sat at my desk at work by myself working on a schedule. This isn’t fair for Scott, I tell myself.

 

And then I get mad, furious at myself. That last thought wasn’t fair for Zack.

 

*   *   *

 

 

 

 

 

 

Scott was watching ESPN (it was Father’s Day after all, and all’s fair in love and marriage) when a short segment came on on some golfer who has a son with severe Autism. I was feeding Zack breakfast, we were giggling. Scott was talking about some championship Ernie Els won and his style of play.

And then, silence.

The video could have been our story.

“But the pictures can’t tell the story”

‘I just hope he’s happy.’

For five minutes, I tried to steady my hand to spoon cereal into Zack’s mouth, as months’ worth of tears flowed down my cheeks.

The Els accepted the diagnosis that would change their family forever.

‘He enhances our lives and he keeps our feet on the ground.’

The portrait is different now.  A portrait that may not be easy, but is pure and precious.

I wiped my tears and received the most glorious smile from my little man, as if right on cue. I kissed my husband, nodded in agreement with a statement he didn’t have to make and we moved on, surviving yet another one of the many, many tests and reminders along the way.

*   *    *

My mother-in-law left her Good Housekeeping magazine here last week after one of her days babysitting. I picked it up while Mickey Mouse sang his Hot Dog song and talked about turning off the silly switch, expecting to browse for a new recipe or stall from cleaning the house.

I found this article instead. A story about a family with two severely disabled adult sons. And the life they never thought they’d be living.

Nobody talks about what happens when the adorable kids grow up, as Matt and Sean did, to be clumsy, awkward adults.

“We were meant to have Matt and Sean,” she says, and I believe she means it.

 

Who asks the most terrifying question a parent can ask, the one all of the praying and baking and scrubbing and bleaching can’t help her outrun: What will happen to my boys?

If watching my sister-in-law deal so absolutely extraordinarily with her ordeal has taught me anything, it is the power of now, the beauty of seeing things as they are, not as you wish them to be. She adamantly refuses to live a life of “if only,” wrapping her arms around what is.
I was about to turn the pages back, re-reading the story as if I hadn’t already memorized it by heart, when a noise captured my attention and my heart. My son, whose future is unknown, whose struggles may only just be beginning, was laughing, sharing a silly smile with me from his twisted blanket on the floor.
I put the magazine down, leapt down to the floor and smothered him with kisses and tickles, stopping once to sign the word for “Mommy” and basking in the beautiful blue eyes.
<—-  (PS — Check out who’s up on their knees, rocking back and forth like a big, strong boy?!)
Those eyes that were one of the first signs of DS for doctors the day he was born. Those eyes that are my grasping back to the beautiful, wonderful world we live in, with blue skies and clouds of white.
A world that has a silly switch that can be turned on every now and then — that NEEDS to be turned on every now and then. But the beauty of a switch is that it can be turned off.
Sometimes, I need to be in that room. The switch turned on, the tears turned on, the sadness and all of it. But I don’t allow myself to stay too long. I close the door, turn off the switch and get back to what’s much, much more important.
The secret to surviving is turning off the silly switch.
And laughing. Lots of laughing.

 

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