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i’m here, & humbled

I’m going to come back soon and tell the whole strange and mournful (and so much more) story, but before that I want to lie on the bed and do nothing.  But before that I want to thank every one of you for praying, reaching out, sharing, virtual hugging, and holding us in your hearts.

Things went (and continue to go) much better than expected!

Off I go…for now.  Just know that I am okay and Jonah is okay and I’m pretty sure Andy is okay, and I am filled with gratitude, hope, and love.

Namaste!

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“No I would not give you false hope
On this strange and mournful day
But the mother and child reunion
Is only a motion away…

Oh, little darling of mine

I can’t for the life of me
Remember a sadder day
I know they say let it be
But it just don’t work out that way
And the course of a lifetime runs
Over and over again

No I would not give you false hope
On this strange and mournful day
But the mother and child reunion
Is only a motion away…

Oh, little darling of mine

I just can’t believe it’s so
Though it seems strange to say
I never been laid so low
In such a mysterious way
And the course of a lifetime runs
Over and over again

But I would not give you false hope
On this strange and mournful day
When the mother and child reunion
Is only a motion away

Oh the mother and child reunion
Is only a motion away
Oh the mother and child reunion
Is only a moment away.”

Mother and Child Reunion by Paul Simon

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far away

“I’m awake; you’re still sleeping…
The sun will rise like yesterday.

Everything that we are now
Is everything we can’t let go
Or it’s gone forever, far away
I hope tomorrow is like today…

Don’t you go away tomorrow –
I don’t think I could handle that
You’re probably dreaming that you’re flying on

and you start to fall

But then you rise
and shine forever
Don’t go away;
I hope tomorrow is like today…”

~Guster

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tomorrow

“If ever there is tomorrow when we’re not together, there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think.

But the most important thing is, even if we’re apart.. i’ll always be with you.”

Winnie the Pooh

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words

I can’t talk anymore.  If you e-mail, or text, or call, or twitter me and I do not answer, please know it is only because i just can’t.  The words have left me.

I’ll borrow words from books or songs or quotes until my own words come back.

I find hope in the darkest of days, and focus in the brightest. I do not judge the universe.  ~The Dalai Lama

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I’m at the point where I just want it to be Tuesday.  I want to go, get it over with – to do it instead of dread it.  I’m tired of being sapped of life and joy, breath and motivation.  It’s starting to feel like I’ve chosen this misery.

Today was Jonah’s last day of school at Wildwood. Thank you so much, Wildwood.  No words can express our appreciation that there is such a wonderful school; Jonah was so lucky to be there for 6 years.

I have so much to be grateful for – there are so many people who care.  Yesterday I got a package from a business networking guy I know.  Inside was a card from him and a beautiful hand-crocheted twilight-blue stole from volunteers at his church.  My hands shook as I read his card and the church’s handmade card and message.  Feeling something almost like shame, I clutched the stole and cried into it.

Then, a lady I am in contact with only by phone and e-mail sent me a long letter about how her son has autism too – something I’d never known.  The letter was full of encouraging, positive sentiments and suggestions for Bible verses for me to read.

My friend H continues to generously offer her pool, and friend K gave me hope – and e-mails me SNL skits to make me laugh.  M encourages me with loving words, and today he also e-mailed me a verse:  Jeremiah 29:11:  “For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”  My aunt texts me messages telling me how much she loves me, to call her anytime, that she is praying for me.  New online friends and past acquaintances, family, friends, everyone envelops me in love and light.

Seems like Divinity is yelling at me from all directions:  Have faith!  Have hope!  I’ll take care of everything.  There is no denying the push of the divine – it’s all around me.  I’m grateful for it.  Every morning I wake and cry, my throat so tight I am almost gasping to breathe –and as the day progresses I become calmer.  I can smell the rose and blow out the candle, and there are long moments of peace.

The push of the divine is gentle but firm, like a tight hug.  I am hugging back, hanging on.

A few more pictures:

happy boo

chillin’ in the pool

water boy

…baby boo,

Mama loves you.

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“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
—–
—–
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…
——-
even when he moves to hit the car window, or a person, with a smile on his face
——
& yet stay calm as we stop to say hello to a beautiful doe
——
he can sit still with safe hands and body
——
but tick tick tick tick tick tick tick tick tick
goes the Jonah time-bomb.
——
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.
——
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.
——
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.
——
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…
——
“and the steel eye, tight jaw, say it all…” ~Cake
——
…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.
——
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:
——
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.
——
HOPE – made of fence posts and flowers.
——
She literally gave me HOPE.

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I’ve gone through a time bending worm-hole.  It was six weeks away, and now it is a week and a day.  I will pour myself into work, twice as much as usual, for I’m taking next week off to do this thing and then process it best I can without having to think too much. 

I keep calling it this thing like it doesn’t deserve recognition in any other terms.  My God, I’m going nuts.  Off the charts.  Just mailed the direct care workers at Jonah’s residence letters and pictures and my blog address, cell phone number – as much information as I could muster about my precious, barely-verbal boo. 

Also I sent thank yous – expressions of gratitude for what they do and deal with every day, for choosing to help these children and face injury and shit smears and God knows what else – all for less money than they deserve, undoubtedly – for what they do is priceless.

I hope this week and next week fly by.  I hope I can go far inside my head, into a Novocain-place, into numbness and ennui, even when I must be awake to work & think.  As oxymoronic as it sounds, I want the foundation of my days to be a state of sleep from which I can wake later, later.  Some other time.  Some other place.

I don’t want to live through this.

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Jonah had a relatively good day in school yesterday, which was very cool to read in his log book – he’d gone roller skating and loved it.  He loves yoga too, and his scooter they pull him around on with a weighted-vest.  My sensory-craver boy…

Then D came over and Andy and she and I brought Jonah and the clippers outside, to the outlet halfway down the driveway – and between the three of us, we buzz-cut his hair.  D did the actual buzzing while Andy held Jonah and I sat on the driveway holding Jonah’s legs between Andy’s legs so he couldn’t kick or thrash.  He was hopping mad, of course.  It looked like a circus act, with hair flying everywhere and Jonah twisting around.  Good thing the neighbors weren’t out.  Afterward we had a near-bald boy who immediately ran inside to look at himself in his bedroom door mirror and run his little hand through its baby-chick-head softness.  I went outside to the driveway where all boo’s hair was scattered and picked up a lock.  Maybe it is silly, but I want it to hold when he is gone and I can’t be with him.

Of course he gave D and I plenty of trouble on the way to H’s house and pool.  Safe hands? he’d ask D, wanting her to hold both his hands.  She’d turn and hold his hands, then he’d try to pick his nose or swipe stray hairs from his face, so she’d let go, only to have him beg for safe hands again.  Over and over.  He kicked the back of D’s seat and head-rest, hit the windows HARD, flat-palmed, and screamed his loudest, his someone-is-murdering-me screams, laughing and giggling afterward.

What?  D and I would ask each other, unable to talk above the noise.  No wonder I am going for a hearing test this afternoon.  Between Jonah, my concussion, and all those loud 70s/80s/90s concerts I saw (like KISS, Rush, Def Leppard, Jane’s Addiction, and every other band where I’ve sat too close to the speakers on purpose), my ears are suffering.  I always did like my music loud.

Then Jonah started to beg for hot dog.  Hotdogwithmustard?  he asked repeatedly.  Hotdogwithmustard?  My plan was to stop at Stewart’s on the way to H’s, but then I called H and she said she still had some from the last time I brought some over, so she prepared one in her microwave, God bless her, so it would be ready upon King Jonah’s’ arrival.

Finally Jonah got both his naked swim and his hot dog and all was right with the world for a few moments, though the entirety of our visit was maybe 15 minutes, tops.  ADHD?  D and I were half-jokingly recalling the blessed days (which we used to complain about, believe it or not) when he would perseverate on just one thing at a time.  Let’s ride the escalator 75 times!  Let’s stare into the street sewer for a half an hour!  Let’s go on the merry-go-round 8 times in a row!

Going on the assumption that most folk prefer pictures over poetry, I’ll make sure to come back later and post some.  I might even upgrade my account so I can post video.  I’m taking pictures and video of Jonah with ever-increasing frequency, as if I can capture and visit him whenever I want.

“The candlelight flickers
The falcon calls
A lime-green lizard scuttles down the cabin wall
And all of these spirit voices
Sing rainwater, seawater
River water, holy water
Wrap this child in mercy…”

~ Spirit Voices by Paul Simon

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I am human,
keen with need.

From birth I discern an infant ability,
a higher order of helplessness:
my just-hatched hands redden & reach
for milk, warmth, a return to the womb

The open palm of desire,
it wants everything…

trucks & blocks, the training wheels gone;
park place, boardwalk – mine – with two hotels on each;
a year’s supply of bomb pops & bazooka joe.

wants everything

golden fairground frying dough, silver stapled stars,
the complete collected works of Everywriter;
watered gardens gifting greens, a son, albeit silent…

It wants soil soft as summer

tenderness.
a yielding bouquet, the feeling in my center
up against another
up against the wall
the kind of time that gets
away
so at the last I want
the strength to let you go
a month, a week, another day.

~ Italicized lines are lyrics from the song Further to Fly by Paul Simon

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