“Welcome…
You’re under control
And buried like a mole
A thousand feet below
Waiting
With all that we’ve got
Our reputation’s shot
A ninety-story fall
No one here can make a sound
We’re all ghosts in this town
We are standing in the trenches
Of the new underground
Pipe down
Stay under control
It’s getting so absurd
Soon everything will turn
It’s that time
To see the Sun
There’ll be a crack
And a day will come
Maybe then we’ll be the ones;
Never can be sure
The shot heard ’round the world…”
lyrics by Guster
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M and I took Jonah in the afternoon on Saturday and the morning on Sunday. I have been taking all kinds of pictures so I can return to them, and to boo, whenever I want…
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even when he moves to hit the car window, or a person, with a smile on his face
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& yet stay calm as we stop to say hello to a beautiful doe
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he can sit still with safe hands and body
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but tick tick tick tick tick tick tick tick tick
goes the Jonah time-bomb.
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The is always an explosion. With shrapnel and wounds. And yet I still, God help me, don’t want to let him go. I want a hero to come out of nowhere, an Autism Super Nanny who’ll whisk in at the last moment to “therapize” the anger right out of him and get to work on making him a normal kid with autism.
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It’s almost funny. I’m not asking for a ‘normal’ kid. I just want a normal-kid-with-autism. I know there is no such thing. I don’t know what I mean. I’m slipping down the slope, Buddhist practice notwithstanding. Cherish me, cherish you. Breathe.
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I understand every time someone tells me I am doing the only thing there is to do – that we’ve exhausted all possibilities – that he will get better at the residential educational home. It’s not that I can’t or don’t comprehend these things. But I feel this way anyway. Frantic. Frightened. Fucked up.
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My great friend K and I had brunch yesterday after M and I had taken him for the morning. I kept beginning sentences and then stopping them abruptly, swallowing hard…
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“and the steel eye, tight jaw, say it all…” ~Cake
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…she understood and, after a pause, would tell a funny story or take the conversation in a different direction. She let me talk but she knew exactly when to steer the topic away from what would make me cry. That’s a skill, and she’s got it, and I’m grateful.
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After brunch, she brought me to her car and said she had a present for me. I was shocked.
Inside the gift bag was this this:
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Good thing we were inside her car because I started to cry, and hard. I loved it. She could not have chosen a better present for me if she had looked all over the world. I hugged her and held her tight.
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HOPE – made of fence posts and flowers.
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She literally gave me HOPE.
The Never Normal 
One week to go. Ahhh…hope…my best word. A bit overused, but it keeps me out of the hospital. 🙂 I am counting the days with you, and “hope” that you will get through it unscathed. <3.
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Barrel Of A Gun lyrics
I know a movie star, I’ve got her plastered to my wall
Just like we’re dear old friends, like she already knows me
She’s perfect as she seems, lifts me right out the Mezzanine
I finally fell in love, I’d been waiting forever
Four, three, two, one
When at the barrel of a gun
Keep my head way down.
Stay out, I’ll stay in.
Half dead, half numb
She’s enough to make me warm
It’s all so safe and sound.
Lie back and fast asleep, if you could see what I could see
Drip drop a lovely dream
God damn you movie star, can’t you just play a minute more
We’d be the best of friends, you could stay here forever
{ From: http://www.elyrics.net/read/g/guster-lyrics/barrel-of-a-gun-lyrics.html }
Four, three, two, one
When at the barrel of a gun
Keep my head way down.
Stay out I’ll stay in.
Half dead, half numb
She’s enough to make me warm
It’s all so safe and sound.
She will be sweet on me, just like a mystery
It’s not so hard to see if I’m not mistaken
She comes from far away, and gets closer everyday
And all that I can say is that she’s all I want and all that I live for
Four, three, two, one
When at the barrel of a gun
Keep my head way down.
Stay out I’ll stay in.
Half dead, half numb
She’s enough to make me warm
It’s all so safe and sound.
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Love you all so much, our hearts are hurting and beaming all at the same time! Jonah is going to have the time of his life! {Big hugs]. I am always here for you, A, you have my #. ❤
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There’s some beautiful writing on this blog. It’s amazing/devastating how beauty can come out of painful things. Good luck on your journey. (P.S. I found your blog on LinkedIn.)
–Lara
http://yourplotthickens.blogspot.com
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I stumbled across your blog, and wanted to leave you a note. I am entrenched in the “special needs world”, as I have a brother with Down syndrome and am a School Psychologist at a school that works with children on the autism spectrum (along with other disabilities). While I cannot fathom what you are facing, I just wanted to remind you that you are not alone. And, in time, hopefully, this will be a miraculous decision and adventure that is an opportunity for your whole family to grow (yet again). “Every time you say goodbye, a new adventure begins.”
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I saw your bit on LinkedIn, I think. Your writing is well done, and your story heart breaking. I’ll be back. Be strong and don’t lose hope. We never know.
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