Archive for March 18th, 2012

I’m tired, and a little sick to my stomach from thinking about the pain my boo will be in – again.  After the first eye surgery was the first time in his little life that he’d verbally expressed pain.  “Eye hurt!?” he cried, more beg than announcement.  Help me.  Do something.  Why do I feel this way?  And we, helpless, holding him, rocking him, offering him pain meds that obviously weren’t working well enough.

Yesterday my mom and I drove down to see Jonah.  We cycled through our routine – sandwich, bath, barbecue potato chips, black soda (or sometimes, now, cranberry juice), cookie.  Jump jump jump on the bed. Car ride.  “Daddy in backseat?” asked Jonah, but I can’t drive a stick and I wasn’t about to put my mom in arm’s reach of my volatile son, so Jonah had to settle for mama.  On the ride he sang with me and then stared out the window, sucking his thumb two different ways:

Then we drove to the park, and visited the ducks

and he got to swing on his favorite swing

then on we drove, down to the river, where the train tracks run

Jonah and his dad watching the waves from the wake of a ship

When we were done there Jonah wanted another bath and The Wiggles, so we drove back to the apartment…

And all the while he seemed fine –but then he puked.  My mom and I cleaned it up while Andy did the bath part.  I am going to talk to the nutritionist ab0ut the possibility of stomach troubles with Jonah.  He’s been throwing up kind of a lot.

He did very well for his rheumatologist appointment on Friday.  Thank God it was indeed E and J again who drove him up to Albany; I guess it will pretty much always be them.  You don’t know what it means to me to have them.  I will never forget their kindness, to me and to my boo.  Their ability to keep track of everything, keep Jonah busy, keep everything together –it’s all so awesome.  I know I say this over and over but I can’t say it enough.

Still,  I’m not at all looking forward to tomorrow.

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I have been writing back and forth with several mothers, some who found me through the CNN article, others I’ve known a while, through one path or another.

E has a child in a residential educational facility too — her child has been there 3 years now.  We write to one another of how it feels.   We hold one another up.   Recently, I wrote to her:

I am beginning to understand that there are a lot of us.   Who have done this thing.  Who feel this way.   Who struggle with mixed emotions – first one, then the other…feeling the guilt and the freedom together, a strange mix of relief and grief.  This is all just swept under the rug.  No one talks about it, acknowledges it, does anything about it.  I’ve had enough of that.  So many families struggle and are in pain.

I want to try to write a book.

Who wants to read a book when there’s no happy ending?  friend E  e-mailed me when I suggested this.

I thought about all the books I have loved that did not have what most would consider happy endings:  The Heart is a Lonely Hunter.  Of Mice and Men.  The Bridge to Terabithia.  The Awakening.  The Giver  (maybe; that one’s left open to interpretation).  Every Shakespeare tragedy.  Alas Babylon.  And on and on.

So I wrote back to her:  Yes. We can compel them to create one!  And she immediately offered me her support and help. Then I thought of the book, The Help – how Skeeter compiled all the stories of the women into a book.  Should I do it that way?

I think we need to have a voice.  There are a lot of people who need help.    Maybe the local autism society can help me figure out how to go about increasing awareness of the ‘behaviorally dangerous’ end of the spectrum.   The rest of us.

Maybe they could call us the prism of the spectrum of autism.  What should be a clear view through transparent glass,  fractured into bits and pieces of what is really there, all the while shooting beams of incredible color in every direction.  Thrown and shattered, though, the prism’s really fucking sharp.  Sharp like people don’t know.  Sharp that would shock them all.

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