Posts Tagged ‘styx’

Well I got a grip, just as I promised, and continue to face forward, move slow, forge ahead.  Those are lines from the song The Captain by the band Guster, who, incidentally, played at Tanglewood on the 23rd.  I didn’t attend, even though it was Brian-the-drummer’s birthday.  I would have loved to have gone, but it’s not like I haven’t seen them 19 or 20 times;  I can live through one season without seeing a Guster show.  I guess.  

I’m mostly learning how to live my new life.  Working from home is wonderful and surreal all at once.  I never know what day it is until it’s go-see-Boo-Saturday — and I eat, garden, read, clean, go the market, etc. at weird times.  

With Jonah I fight stagnation, against a dull acceptance of what feels like a fight I can’t win.  Andy gets the majority of Jonah’s affections, but also the majority of everything else – embarrassments, messes, attacks.   My mother laments that Jonah “just isn’t interested in anything,” though she doggedly drives down with me every Saturday to face the mysterious nature of Boo.  I did not mean to sadden my parents this way.  They have no other chance at a grandchild — and they were both so excited when I announced my pregnancy on Flag Day 2001.  It is true what they say — the best way to make God laugh is to announce your plans.

But I see glimpses of wonderful things in Jonah which I believe could grow, and be nurtured.  His sense of humor.  The funny vernacular, all his own.  He is interested in things.  I know he is.  I’m grateful his school provides activities and “field trips.”  With us he mostly just wants the car ride, and, as soon as we turn on the car, music…

For those of you who don’t speak Jonah, he is saying “want music on?”

Yes, he still requests “bath” and still he loves the lunches my mother brings down, and he seems to enjoy our presence, mostly, with smiles and whatever sense of comfort the weekly visits can give him, though it’s always a crap shoot, every time.  You gotta like gambling, or at least you gotta get used to it.  This past Saturday Boo was cute:

you can see the smile about to bloom on his face even without seeing his mouth

You can see the smile about to bloom on his face even without seeing his mouth.  his left eye looks a lot different to me than his right eye.  More doc appointments soon…

…but he was also all about daddyMore hugs, give bath, want kiss — all daddy.  No mama, bye bye mama.   Bye Bye Rainman. 

Like in the movie:

Raymond Babbitt: You were in the window. You waved to me, “Bye bye Rain Man”, “Bye bye.”

(Thanks K, for the reference, the giggles, and the better title for this post)

My mom was there but Jonah wasn’t interested in her much, either.  On days like this I remind myself the pendulum will swing and he will again love and hug and request grandma and me, but I can’t tell you it doesn’t sting when you’ve driven to visit your only child who wants nothing to do with you and actually, mama, if you could get even farther away from me, that would be grrrreat.

He had his ups and downs this week.  I think we were called three times during the week about when Jonah needed managements for aggression.  I know what the people who have to try and hold my Tazmanian devil are facing.  They’re getting physically hurt by my son, and Andy and I used to be them, and I want to thank them for saving me because I was really running on empty there for a while. When I allow myself to ponder it on any level but its surface, I am dizzy with disbelief. 

I disbelieve I have a son who is violent, even while I know he is.   I disbelieve how changed everything is for all of us from 3, 8, 12 years ago. Some of it is so ironic.  I followed the whole attachment parenting thing, for the most part, during Jonah’s babyhood.  Now I could not be much less attached physically, and we’ve only got that on-and-off attachment emotionally.

And then I think of his day school, three years ago, and how they were doing nothing BUT managing him.  All day. Every day.  I think of what living with Jonah’s aggressions did to me, and to his father.  And I realize it takes a long-sighted perspective to see where Boo stands in the grand scheme of things, and how it’s actually not all that bad.  He’s 11, and like any 11-year-old, his hormones are changing. He’s growing up.  Because he has autism and is just a little bit verbal (and not at all conversational), I tend to think of him more in terms of his cognitive ‘age,’ rather than his actual age.  Would you believe me if I told you it is difficult to remind myself he is 11?  It is.

I changed one child’s diapers for nine years.  It kept him a baby in a weird way, in the way I feel he will always be my “baby angel.”

Some days, this blog is more therapy than anything else for me, and this is one of those days.  I write about (and through) problems and perspectives as I consider, question, and allow myself to go numb, in turns.

More fun on Saturday: the rare occasion when Jonah sits nicely at the table to eat.  This is one of photography’s grand illusions:  to conjure a scene about which the perceiver then makes an untrue assumption.  The photograph does not lie, nor the photographer – but the snapshot of the moment can give a false impression, whether intended or not so at all (as in the pic below),

see how is leg is wrapped around his other leg?  that's his mama all the way.

See how his leg is wrapped around the other leg?  That’s his mama all the way.

The truth is Jonah is in near-constant movement.  A few seconds in one place.  Maybe a minute.  They say he sits for 15 or 20 minutes in school to do a project or activity).  Jonah prefers to get up, walk around, turn a circle or five, and return to home base. I sometimes turn with him, we twisting and whirling on the carpet like two strange birds.  

I’m looking forward to Saturday.  I will always have hope for my Boo, for the rest of his life, one day following the next beneath the sun and stars.

sweet boo

sweet boo

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