Colliding with Jupiter

Eve is waking up and promptly hands me a paper. It describes the stars and the sky. She desperately wants people to know that the sky is not plain. It's not a big, dark abyss. She loves the sky and outer space. Thumbtacked to her ceiling are individual model planets, each in their proper place with a proper, scientific distance between them. Sometimes when I tuck her in bed at night, I flick her covers up in the air to straighten them and they hit the orbs above her, planets colliding playfully. She shouts, "Oh, no! Jupiter!" as if it was a person who she tenderly loved.

Eve tells me about the stars. She keeps talking in swirls and sentences that have no end. I hear bits of her story, aware that she will not be stopped until all the information has been released from her brain, the way a person feels when they recover from influenza.

She tells me that the North Star doesn't move but that all the other constellations do. While she is talking I realize that I am her North Star and she is a constellation, trying to avoid colliding as she navigates the dark, stories trailing behind her.

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We are in a hotel and Eve is drawing a map of the room. We cannot leave the hotel room until she is done drawing the map. There is an earnest look on her face. We pack the car while she draws, until all her anxieties subside. It's a very accurate drawing.

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We are in an airport. The place is thick with people. But Eve must touch the mosaic floor, so playful and bumpy and colorful. She lays on the floor and touches it and I stand over to protect her from the herd. 

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The doctor smiles at me and tells me that Eve has autism. She tells me that a few years ago it would be considered Asperger's but now we're not allowed to say that anymore. It's an old term. She says this confidently. I trust her. But in my heart I want to call it Asperger's. It doesn't carry the weight of the word autism. It sounds lighter, almost fun.
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Now I am wondering if a man I knew 20 years ago had autism and I'm thinking yes, yes he did. History is being rewritten in my mind. I don't see him as a man who is trying to be obnoxious. I see him as an autistic.

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There is no perfect way to tell a story. No one has the perfect volume, the perfect words and pitch and tone. Some people will think that you don't have enough adjectives and others will find any emotion as being sensational. 

That's how I feel with telling our story of autism.

I'm not sure how loud to be or how soft to be. All I know is that autism has changed my life in the same way that divorce has changed my life. First, there are the broken waters, the tears, the wrestling with the way life should have been. It's loud and chaotic and expensive and life draining. And then, over time, things change. I walk differently. My brain fires neurons in a new way. I can't explain it. It's chemical. I wouldn't want it, I didn't choose it, but I've been changed, I think for the better. It's an awful kind of grace. 

Some days I feel strong and mighty. I read the books and I know the words about autism in order to feel strong.
But earlier this week my husband came home to a woman who uttered such desperation that I wondered if he might not want to come home again. I told him I would rather wash a hundred bathrooms than deal with this. Autism is hard. 

Sometimes I shake my fist, vainly.

At the chaos of it all.
At all the insurance hoops.

At the perky way teachers describe the way they'll work with Eve. Wink, wink.

And in my gentler moments, I see that I am an actress in the play of life, doing my part, saying my lines and that the story wouldn't be the same without all of us.

Yes, all of us.