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Archive for July, 2011

aftermath

Posted in Uncategorized on July 5, 2011| 6 Comments »

That same day, as I lay across the bed trying to think about nothing, I of course thought of something.  What I thought was this:  if I called the Anderson School, they might have some news for me.  Will they admit him or not?  If so, when?

So I called the admissions department, got voice mail, and left a message.  M came home a few hours later and we turned on Match Game.  When the phone rang at 5:30pm, Anderson Center came up on the caller ID.  I picked up the handset and a voice spoke and the voice told me Jonah has been admitted to the school and the residence as well. 

They are thinking mid-August for the actual move.  It is strange how I spoke calmly with the admissions counselor for about 15 minutes, asking questions, writing down classroom ratios, phone numbers – details I’d probably already learned.  Finally, a fog of shock descended, making it difficult to speak. 

I thanked her, hung up, ran to the bathroom, and threw up.

Then I lost it completely, sobbing in M’s arms, the fog-shock all around me.  I felt a strange mix of panic, guilt, incredulity, rage, and a breath-knocked-out-of-you grief.  It was what Oprah likes to call the ugly cry, with snot and drool and gasps for breath between fear-filled moments when there is no air and you drown in the sorrow. 

Eventually the drowning became a wallow
and the wallow became a silence
and the tears came quietly in uninterrupted rivulets along my cheeks.

Then I thought:  why have I gone into this ridiculous state when I knew all along this was our goal, when we’d planned for months to do this thing, to tour the residential schools, to place him in a good one, to give him the best chance at living and learning and getting better?

And now what?  Are there instructions for giving up guardianship of your nine year old non-verbal precious little boo, and living an hour and a half away from him? 

Is there a solid path to follow, a rock to hold so you don’t float away on the waves of incredulity, a way that doesn’t hurt like fire?

Am I going to make it through the next 6 weeks?  Am I going to make it at all?  I have cried buckets, rivers, oceans of melodramatic tears.  My weakness sickens me. 

And there is a lot I am leaving unsaid.  It is better that way; I want to forget so many things. 

All I want to do is sleep.

“I don’t even try, I know I have seen the best I’ll have
I don’t even try;
I will just play dumb
I won’t hear a single word that’s said
I will bite my tongue
Never sing another song again”

~ Guster, Rainy Day

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boston children’s hospital

Posted in autism, behavior, doctor, Uncategorized, tagged , , , , , on July 3, 2011| 3 Comments »

Andy and I Jonah and I left Albany at 6am last Tuesday to bring Jonah to Boston Children’s Hospital for a 9am appointment with a pediatric rheumatologist (because even though we live in the pretty little capital city of New York State, there are zero pediatric rheumatologists here).   Jonah has been limping and was clinically diagnosed with pediatric juvenile arthritis based on other health problems like synovitis in his hip and jaw, and iritis/uveitis in his left eye.

In February of 2010 little boo had an operation on that eye to replace the lens, and they implanted something called Retisert to constantly dispense small doses of steroids locally.  When we got him home and the anesthesia wore off completely, I took a picture of him in his misery.  I guess I wanted to record it while desperate to alleviate it.

I hate this picture.

This was the only time in his little life that he verbally expressed pain to us:  eye hurt, he cried – just once – as if agony could forcibly pull language out of him.

We gave him medicine and I rocked him in my arms, wishing I could fix everything.  Turns out we can’t fix his arthritis either – but it’s mild, they told us, and naproxen should be able to help him with his limping and any associated pain.  They told us neither his eye nor his arthritis would cause his aggressions.  Nobody can tell us what causes the violence exploding like mines inside him, timed to a schedule so erratic it has no business being associated with time at all.

The three hour trip to Boston was okay – we’d given him sedatives the doc had prescribed – and we managed to get him in and out of the short appointment without any major aggressions.  It is undoubtedly an amazing hospital, even aesthetically, complete with musical steps, bubbling walls, and God knows what else we didn’t see because we were in and out of there so quickly.  On the ride home we had to pull over three or four times because Jonah went bezerk.  Andy ended up in the backseat with him, holding him, getting his own arms scratched to hell.  There was virtually no conversation there or back.  We were collectively frazzled – got back into town around 3.

After I dropped Andy and Jonah at the house I went home to my apartment where sweet Jack Ingalls was waiting,

and I lay across the bed, trying to make myself think of nothing.

“The things that I’ve loved; the things that I’ve lost
The things I’ve held sacred that I’ve dropped
I won’t lie no more, you can bet
I don’t want to learn what I’ll need to forget…”

~ Audioslave again, “Doesn’t Remind Me”

I can’t write anything else right now.

I’ll come back.

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