Friday, February 3, 2012

Sturdy

                                                                           Sturdy
If tomorrow morning the sky falls…/have clouds for breakfast. If night falls…/use stars for streetlights.”—If You’re Afraid of the Dark, Remember the Night Rainbow, Cooper Edens  1979
Descending from the top of the stairs, he pauses for a full two minutes, one shoeless foot stretched out straight in front of him, as if frozen in the middle of a kick-line dance.  “Come on down, Cliff. Breakfast is ready”. I watch from the landing as he gingerly puts his foot down, toe first, as though about to test the pool water.  Then, something happens that I haven’t seen him do before:  He turns himself around, Hokey Pokey style, in a complete circle before completing his descent. This seems vitally important to him, just like his habit of closing all the doors in the house and taking mail out of the mailbox one piece at a time.
News arrives via Cliff’s communication book about the scourge of the stomach virus traveling from one person to another at his dayhab program. It has me on edge. On Thursday, he isn’t quite himself. In the middle of the night, the familiar cough and roar coming from Cliff’s room has me running in to his room from a dead sleep, in time to grab a towel to catch the first of the night’s stomach contents. I am careful to not breathe, to spray the Lysol in the air between us and on every surface I believe he’s touched. I wash my hands at least a million times. But when I am that close to the front lines, it’s foolish to think there might be a different ending to the story and I resign myself to waiting for my own symptoms to start. Thirty six hours later, well…
One day when my boys were small, I took them to J.C. Penney’s portrait studio. There was someone ahead of us so we had to wait awhile. In the meantime, a dad with two children came in. When I glanced their way, it was hard to ignore the children staring at Cliff (We are used to this). After several minutes, one of the children asked me, “What’s wrong with him?” Dad pushed away the boy’s pointing finger, embarrassed, and admonished him. “That’s not polite!” I bent down to get closer to the boy’s face and gently said, “There’s nothing wrong with him. He looks a little different, that’s all.” To the dad I whisper, “Next time, it’s okay to answer his question. Otherwise he’ll learn to be afraid.”
To be completely honest, I’m not always nice when people stare. Sometimes I just stare right back. If I'm in a mood, it's a death ray. I will concede it's hard not to stare at a grown man laughing to himself in the grocery store aisles, or saying, "Halloo!" to no one in particular. Still...
These are some of the stories I thought about after I read an article about a woman who fought successfully for her child's right to ride a regular school bus and attend his neighborhood school. The school district was still in the dark ages, and opposed his inclusion. She adopted Churchill's motto--never, never, never give up--and she didn't. All these stories hold a common thread; they all are a part of the amalgam of events and realities of raising children with a difference.

There is a sturdiness to parents like us.  We do what all other parents do for and with their children; we just do it longer.  It’s like what some call “soldiering on”. We don’t even know we’re doing it until some well-meaning soul from the side of the street where the grass is supposedly greener, says how amazing we are. It’s funny, really, that someone might think I’m some amazing person when I am just me, Celia, who grew up in a modest town, in a modest home, with a modest intelligence and the kind of shy temperament that kept me on the outside looking in. I’ll tell you--you learn things when your kids turn out differently than you once daydreamed about. You learn that every day your child wakes up and is here, it’s time to bring that day up to the level he or she deserves; you’ve got to make the noise required to speak up when a child can’t; you must put your heart and soul into it. There isn’t another option. We owe our sturdiness to a steel will born on the same day our child was born or diagnosed or injured, the one that built up from that time on, instilled by God, whether you believe in Him or not.                                                                  
There’s no magic in it. It isn’t heroic. It’s simply putting one foot in front of the other.
 I like to think I do it with flair, a little like Cliff descending the stairs.

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