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Posts Tagged ‘hope’

boo riddle-y

Not writing here feels like holding my breath.

Jonah has been largely aggression-free for a while now.  I say “a while” because I don’t think of time in terms of hours days and years anymore….at least not in the way I used to.  Boo’s every moment is a possibility; his focus flits and alights in bat-like erratic patterns of flight.  He soars and crashes.  Sometimes, when he is soaring, I feel a superstition of sorts – as if not writing about him will protect him from the pendulum’s swing.

Boo ridlle-y.  On Saturday he laughed and spun, ate well, sang a little, watched train-on-TV, and rode happily in the car, rocking to his tunes (he enjoys Emancipation, daddy’s double album CD by Prince right now) and making funny, silly, happy faces:

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All I want is his happiness.  That’s really ,when you get right down to it, all I want.

I am grateful for it.  I take pictures of his happiness, over and over, to remind me it is there even when I cannot see it.  I am grateful today for so very many things.  Boo’s school & caregivers.  His daddy.

For the fact that I woke up free of pain and able to breathe and see and walk and write.  For the incredible freedom of working from home – to be able to write and make a good living of it.

And I am grateful for Boo’s right eye, for we were all wrong about the left.  He’s nearly blind in it — maybe he can see shapes but that’s about it.  He had cheated on the other test.  In almost every picture of him now you can tell his left eye isn’t quite right.  The amazing thing is Jonah seems not to mind so much.  I think maybe this is yet another blessing for those on the more severe side of autism:  Maybe these individuals have no expectations from life.  They just live it and react accordingly to stimuli, perhaps even instinctually, in whatever way they can in order to move through what must seem a very foreign world.  There is joy for them here, and there is sorrow, but it is not the same as ours and never will be.  Theirs is a pure innocence and a soul unsullied by envy, shame, jealousy, guilt, bitterness… so many wonderful things to be without.

I think maybe I need to try harder look at things from Boo’s perspective – to watch and listen and tune-in to him more, instead of being so reactive (something I’m almost body-trained to be from his aggressions).

I am looking forward to Saturday.  My hope is relentless, week after week, in the face of any possibility imaginable.  If that is the definition of crazy then there it is.  I can be that kind of crazy.  I can be anything I need to.  I am pliable, lithe.

Thank you is my prayer today.

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Whenever I stop blogging for a week or longer, there is too much to say.  Then another day goes by and more happens, and I start to dread attempting to sift through it all to highlight all the events, which then usually get amalgamated.  So be it.

Sometimes I’m lazy and turn everything into a pictorial.  This will be kind of like that, I suppose.

Last week Jonah had a doc appointment with the pediatric rheumatologist at Albany Med.  I love her and her staff.  They get Jonah right into a room and usually see him quickly.  I’d made sure to buy a whole pile of octopi, so I was prepared with both that and a bag of fruit snacks for Boo.  I called my dad to see if he wanted to come, because Jonah is rarely aggressive at this particular doctor, and I thought Jonah would like to see his “pa.”  So my dad met us there.  But Murphy’s Law being what it is, Jonah came at me at his usual light-speed and grabbed the front of my shirt, nearly ripping it in half down the middle.  Luckily both N and P were there from the school, so they intervened quickly and that was that.  It was enough to send my dad off into the waiting room for the rest of the appointment.  Though I tried twice to convince him to come back in the room, he refused.  His theory is Jonah aggressed because he was there, which may or may not be true…but he was a good boy for the rest of the appointment.

Jonah with his octopus and fruit snacks (and still, the eye shield)

Jonah with his octopus and fruit snacks (and still, the eye shield)
Boo, acting all punk-ass, slouched in the big chair

Boo, acting all punk-ass, slouched in the big chair

It’s a shame my dad did not get to see him for a longer period of time. I think he carries a deep sadness inside him, a kind of trepidation in his gut that simply will not abate.  I understand this, though it’s distressing for me to witness.  Sometimes I wish my parents had adopted another kid or two, so they’d have more grandchildren.

This was the second doc appointment that week, the first being the amazing one I’d talked about last post, so I got to see Jonah 4 times in one week, most of which were affectionate and joyful visits.

Though his retina doc still wants Boo to wear the eye shield, we got permission for him to go swimming with a life vest on (so he wouldn’t go too much underwater), and evidently Jonah was okay with that, even though he has never in his life needed a life vest.  I thought he’d pitch a fit, wanting to go deep under and swim along the bottom as is his preference…but I suppose he was in no mood to look this gift horse in the mouth (even one which forced him to compromise).

I missed him so much after that — maybe because I’d gotten to see him so many times the week before.  So I was really looking forward to yesterday.  When my mom and I were driving down I was in an awesome mood.

But the visit was tough.  Jonah was on the playground when we arrived to pick him up, and though I held my arms out wide for a big hug, he ran straight into daddy’s embrace.  This I can handle and understand; he is with his dad more than he is with me, but still I can’t help wishing he’d run to mama once in a while.

We arrived at the apartment and all seemed okay.  I was proud of myself because once he tried to lash out at me and I deflected his swing “Karate Kid” style, wax on-wax off, just like Daniel-son.  But then he got me good a few minutes later, coming at me with two fists and tightening each on a wad of my hair.  I called out and Andy came running, lowering Jonah to the floor and telling me to come with them (as if I had a choice).  I grabbed each of Jonah’s fists and pushed them into my head so as to lower the pain level and ensure he didn’t dig his fingernails too deep into my scalp.   While Andy was trying to disengage Jonah’s fingers and my mom tried to reason with him (Now Jonah, don’t hurt mommy), I writhed on the floor and cried like a wimp.

Then Jonah scratched up my eyelid (my eyes were closed tight) and bit my left arm, twice, hard, leaving painful welts I can feel today.  His shoes were still on, so I got a few nice hard kicks to the stomach as well.  Finally Andy disengaged him and I ran into the bathroom and closed the door.  If I’d had a sense of humor about it at the time, I’d have taken my camera into the bathroom and shot pics of myself.  My hair looked Halloween-crazy, teased into a mountain of snarls and tangles.  I carefully combed it out and removed a huge handful of hair from the comb,  washed my face with cool water, took a few deep breaths, and came back out to the kitchen.

After that he was mostly okay.  I’d bought him a train video (a double DVD of real trains) and he liked that.  We took Jonah for a car ride (my mom stayed back after I helped her log into Facebook so she could look up some relatives) and Andy gave him an eye drop, and for a while it was peaceful enough.  Later we had to pull over twice because Boo started crying and asking for one of his favorite caretakers at his residence.  Each time Andy got out of the car and hugged him tight, letting him cry.  I breathed deep.

We'd taken the eye shield of to give him his drop but you can see how it looked all gooky

We’d taken the eye shield off to give him his drop, but you can see how it looked all gooky

We have two more eye doc appointments next week – one at the glaucoma doc and another back at the retina doc.  I hope and pray the blood in his eye has abated, and that he will have some sight left in the eye, and that he can swim as he likes for as long as he likes.  My poor Boo.

Someone at his school called me last week to see if I had any questions about Jonah’s progress or anything I was concerned with, and I mentioned the medications and the aggressions-sans-antecedents, and she assured me that it was a fine idea to speak with Boo’s med doc, though I still want to wait until his eye situation is under control.  Also, the pediatric rheumatologist saw no problems with his joints, so if he does not need it for the eye, we may be taking him off the Humira and possibly also the Methotrexate.  So I don’t want to monkey with his psych meds at the same time.

It is hot today and I am smiling just picturing him able to go in that pool – not being left behind as all the other kids get to swim.  I hope he is having a happy day.  I’m still doing well and shrugging off the incidents where he hurts me.  I know he does not mean to hurt his mama.  I know he loves me and I love him and we are all doing everything we can to ensure his happiness, safety, and well-being.

I know we are lucky – especially when I broaden my perspective and think of the rest of this planet.

Every morning I wake up and the first thing I think is thank you.  My new job has an overwhelmingly positive effect on every single piece of what I think, what I do, and what has become most important to me.

Andy may bring Jonah up this week to swim in my mom’s neighbor’s pool.   We just have to borrow a life vest from someone.  I will get in the pool with him and we’ll have a blast.  At least this is what I hope.

“We must accept finite disappointment, but never lose infinite hope.”

~ Martin Luther King, Jr.

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“Turn the clock to zero, boss
The river’s wide, we’ll swim across…
Started up a brand new day.

It could happen to you – just like it happened to me
There’s simply no immunity – there’s no guarantee.
I say love’s such a force – if you find yourself in it,
And sometimes no reflection’s there…”

lyrics from Brand New Day by Sting

Well I’ll be damned.  I cough up all kinds of ugly, shameful, depressing self pity and all I get is affirmation and support in return.  Comments here, e-mails, facebook messages — and from all over the world.   When I woke the next day after spewing forth that mess of a post, I expected judgement and anger and shock…and there was none. Instead there was understanding, kindness, gentle proddings and sound suggestions.  All I can say is thank you, from the depths of me, humbled and comforted.  Thank you.

It’s as if, now, I’ve been allowed to re-set it all and separate everything out into manageable portions.  I’ve secured Jonah’s medications through Medicaid.  I bought one of those big pillows with arms on it, so we could place it between Jonah and whomever braves the back seat with him and prevent injury until Andy and I can buy a harness like Andy has in his own car.  I drove over to my mom’s and we spoke reasonably about what we should do, and how, and when.  I spoke to Andy and we are calm with one another, cooperating, making moments of quiet and peace within every conversation.

Yesterday’s “Jonah’s report” included the irony of another child attacking Boo, who came away with but a few scratches.  I asked if Jonah had “snapped” and fought back, and the answer was no.  More proof that there is no rhyme or reason to our son.  I suppose it is my path, this crazy brick road, and I shall follow it through forests of angry talking trees and witch-sent flying monkeys until I reach the emerald land of Oz.

Pay no attention to the man behind the curtain.

Someday I will awaken to find it all a dream, to find I could have left the whole time had I really wanted to, had I clicked the ruby shoes together.  Until then I will take things in little pieces, bite-sized problems to nibble, one at a time.

And meanwhile I have this wonderful job which came along at precisely the right moment – turn the clock to zero, boss – my work filled with writing, editing, proofreading, none of it feeling like work at all.  I do my work on the couch with a laptop, turn the TV to the classical music station, take short breaks to water my garden flowers or walk in the backyard with Manzo-kitty and Jack-dog.  Sometimes I take moments in silence to close my eyes, breathe in and out, day-dream, pray, meditate, allowing myself to be grateful…hopeful…to recover from each fall until I feel my wings’ re-growth and I can fly once again, gliding over everything.

And for the first time in my life, I work for a living doing something I truly love – something that, when I lay my head on the pillow at night, makes me smile in the knowledge:  Today I have helped others. Today I have taken strangers’ problems and turned them into opportunities.  I am doing good in the world.

I never thought I’d come to this much trouble or this much joy, let alone all mixed together, paint-colors running on a canvas into pools of artwork.  It feels good to be able to stand it all, the crazy pain and soaring pleasure in turns, strengthened by support from so many…heightened by a renewed determination brought by every brand new day.

I’ll share photos today of random beautiful things, people and places:

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This woman played beautifully, heart-wrenchingly, in New York City’s Central Park.

instructions for my son?

instructions for my son?

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Stained glass in the windows of Christ our Light Church in Loudonville, where I used to work once upon a time

Jonah visits some chickens

Jonah visits some chickens, smiling at them all

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A nature art creation I made in the stones under the Blenheim covered bridge, which crumbled and fell a few years ago.

waterfall forest boy

waterfall forest boy

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the underwater shimmer of koi

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another forest nature picture, with a rose and white stones

my boo and me

my boo and me

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Never deprive someone of hope; it might be all they have.
~ H. Jackson Brown, Jr.

Early tomorrow morning Andy is driving Jonah up to Albany for an operation to remove the Retisert implant from his left eye.  (Turns out I’ve been spelling it wrong for a while).  I know that the chance of Jonah’s eyesight improving in that eye is slim, and we hate putting him through yet another eye operation, but still I have hope that it will help him to have the implant gone.  It is at best a foreign object doing nothing, and at worst something which causes his eye pressure to rise – and maybe even causes him pain.

Tomorrow and the next day will be a time of special vigilance over Jonah, to care for him when he (almost always) gets sick after awakening from the anesthesia, to ensure he doesn’t get any of his little fingers under the eye shield, and to keep him pain-free, occupied, and as calm as possible.  Andy and I and Jonah will all stay overnight at my mom’s, so we can take turns watching him and caring for him.  At the very least Jonah’s constant cries for “Grandma’s house?” shall be fulfilled.

On Saturday when my mom and I drove down to visit Boo, our spirits were somewhat lifted because he’d had a good week, for the most part. Again the pendulum swings without reason; after his eye heals, I would like to contact Jonah’s psych doc and titrate him off his meds, then start over with one med at a time.

Saturday Andy was very tired (he struggles with insomnia).  I tried to step up and help out more than usual so he could lie down.  I gave Boo his bath and offered him small sips of his beloved black soda.  I played straws with him on the floor, which basically means I make little house-like structures with colored straws and he gleefully knocks them over…or, in another variation, he dumps them all over the place and we sing “clean up, clean up” while he picks up two or three straws and I pick up the other 22.  Sometimes he’ll help me sort them by color, but he wasn’t having any of that this day.

We went outside to blow bubbles —  I hold it?  — Jonah asked after I blew a stream of bubbles into the air.   I put bubble solution on the mini-wand and handed it to him, and he blew way too hard and spazzed the solution all over himself.  He didn’t seem to mind; he simply handed the wand back to me and watched some more of the rainbow orbs fly past him into the air.

Then I got on Andy’s computer and showed Jonah the video of him swimming in a Cape Cod hotel pool when he was seven.  Interestingly enough, Jonah is at his heaviest in the video (and has moon-face from steroids given to him to combat the the very beginnings of all these problems with his left eye).  At any rate, it had been a while since I showed him this video and he shrieked with delight, watching himself swim.  I asked him if he wanted to watch the video of him singing Guster, but he kept asking for the swimming video, so we watched it 8 or 9 times, each time Jonah screaming in excitement.

Finally, I entered “train” into the search box and, thanks to all the rail fanners, there was a plethora of videos of trains approaching and chugging along.  We found one of a nice, long train….the approach, the gate lowering, the lights flashing, the rhythmic noise growing louder and louder, and the cars passing by, providing Jonah with a visual ecstasy I don’t quite understand but can certainly appreciate.  Instead of shrieking, this time he stood mesmerized, his eyes following each car, never growing bored even though this particular train was at least 100 cars long.  A few of these videos kept Boo occupied for quite some time – all in all, enough for Andy to have a quasi-nap (if all the screaming and shrieking didn’t wake him).

And so Saturday served, also, as an early Mother’s Day for me and my boy.  I was a little disappointed that his teacher at school didn’t have the kids make something for their moms, but at least I got to spend some fun time with him.  And tomorrow and Wednesday I’ll be spending all my time with him, gladly, even though it will likely be exhausting and scary.

I hope the operation goes well.  I hope Jonah doesn’t get too sick.  I hope we can keep him pain-free.  I hope his left eye’s vision is somewhat restored, or at least not damaged further.

I hope.

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“We must be willing to get rid of the life we’ve planned,
so as to have the life that is waiting for us.
The old skin has to be shed before the new one can come.”

~ Joseph Campbell

Me & Boo

Window

by Guster

A gaping wound tells the story of it all
A man lost only to find
What was left of his mind
With no hope of a scar at all
You say, “Go slow”
But something’s right behind me
I can run away for only so long
It will not stop
I will come down
Oh no
Let me find my way
I’ll take you to the edge
Go across that window
And I’ll carry you there
Oh when nothing goes right
Oh when days don’t come tonight
Oh when all I see is the error of my own enemy
A man alone and cut and torn for it
His whole life friend after friend
They’re all a flash in the pan
With no hope of rejoice at all
Let me find my way
(Don’t be scared of what you might be thinking)
I’ll take you to the edge
Go across that window
And I’ll carry you….

I love how you can see his reflection in the car window here

What a beautiful weekend this is.  What a happy boy was Boo yesterday.  He is the dawn after my darkest.   Jonah is such a joy…clever and curious…a mischievous boy with a sometimes silly, sometimes subtle, sense of humor.

And this time when we visited the river/train he really wanted to dip his feet in the water.    (The whole thing was my fault because I took off my sandals and dipped my feet in, and then he wanted to also, so we both did).

We splashed around together and giggled and got pretty wet – the kind of wet you don”t worry that much about because it’s sunny and warm enough to dry you pretty quickly.

Jonah, splashing around with Knockout Ned

Captain Jonah surveying the land

for Boo there’s nothing better than water

A patriotic Jonah sports a shirt from “Pa”

Jonah, watching them take a boat out of the water near the dock where he usually sits

After my mom and I left, Jonah stayed with his dad and they likely played some more, hit some of Jonah’s favorite hot-spots.   Again today Andy went to pick up Boo, bring him back to his apartment, give him lunch, a bath,  and spend time with him.

Maybe he will be able to take him overnight some day.  It is enough to have small steps.  It is enough.  Seeds, sprouting slowly, but sprouting nonetheless.

Jonah meditates under his daddy’s careful watch

Today I gardened and gardened and gardened.  I found all the little pots I could and filled them with soil and impatiens, and I dug in the earth and planted some.  Things are about as pretty as they’ve ever been in both my front and back yards.  I weeded as much as I could, and M mowed the front and back, and then we were hot and tired, so we came in and I decided to sit in front of my fan and blog.

My lovely flowers…the key to flowers is perennials, I think.  More perennials.  I am so not a gardener, but when I garden I feel joy.  I don’t use gloves…I need to feel the soil and let the earth move through my fingers.  (You get very, very under-the-fingernails dirty and usually a whole lot of scratches this way, but still it is the only way I can do it).

I’m going outside to take pictures of the friendly flowers and prickly plants and prickly flowers and friendly plants I played with today.

somehow the focus is on that bud off to the right…

I think Emily was correct:

“Hope is the thing with feathers, that perches in the soul, and sings the tune without words, and never stops at all.” ~ Emily Dickinson

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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
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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.
——
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:
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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.
——
HOPE – made of fence posts and flowers.
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She literally gave me HOPE.

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“…there is love, there is peace in this world…”

~ Guster

Jonah had lots of fun swimming the other day in a pool whose owners had kindly offered us its use while they went away for the weekend.  He wanted to swim sans suit, so we let him.  It was wonderful; he laughed and played.  What should be common is rare and precious.  Here are some pics, and more I took recently, capturing beauty…breathing it…internalizing the warmth of the sun, the smiles of my son… 

I love to take photos and wish I was 1/100th as good as my cousin D.

he loves to swim along the bottom of the pool

~~~ he is a creature of water ~~~

…which was fun to take pictures of too…

I loved these flowers M delivered to my work, surprising me because I have been so sad – they are even more beautiful now that all the lilies have opened their eyes…

I love this plaque my sweet friend D gave me – my favorite thing to see each day when I wake up.

And I love how many of the trains we see have gorgeous graffiti:

And of course I adore Match Game & Richard Dawson, my campy 70s escape-love.

(Here he’s even promoting my profession).

Every time I get knocked down, I get back up again, damnit.  So far I’m doing it, whatever this is that I’m doing. 

Thank you all for your collective conscious loving energies, prayers, and encouragement.
I am literally powered by it all.  I keep going because you push me gently along…so thank you.

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