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For a while I was a mother, the way other mothers are.

For nine and a half years.  I remember it.

I remember watching Jonah sleep, changing his diapers, helping him get ready for school, taking him to the park and home for dinner.  There were birthday parties here with family gatherings in our finished basement.  We played in the baby pool and Andy took us sledding.   I also remember how hard it was, how fucking frightening and relentlessly backbreaking our days became toward the end – and I sit here grateful for the stillness in which to type these words, I do.

But at the same time I feel a vicious, raging kind of helpless. When I get home from visiting my son, I’m angry.  I want to scream and moan and rave.  I slam my vacuum around the house, cleaning things just to feel some control over my environment.

There are things to say but I don’t want to say them, so I stay off the blog.  I don’t have any funny or engaging stories.   And when I read over these blog entries I make myself sick with all the whining and the wretchedness.  I wish I had better news, some anecdote to share.  I only have what I have, and I can only feel how it feels.

Things were looking pretty good on October 1 – they made Jonah Student of the Month, even, and his name and photo were on display in the front of the school.  I took a picture of the display case when I visited on Open House day, but I can’t find it now.  The school sent a certificate and a letter about how well he had been doing.  It was all really encouraging and cool.

They forgot to knock on wood when they said it, though, because it’s been all downhill from there.

Our visits with Jonah are worse.  I used to complain – recently, even – when he’d come running into Andy’s apartment and then just stand in front of the refrigerator, asking for whatever he felt like eating and scarfing it down before next asking for car ride.  Now car ride is all there is, and by that I mean we pick Jonah up at his residence and he says “no apahmen” and “no lunch” – and while my mom waits behind with whatever food she’s brought us for lunch, we drive the same loop over and over.

The best we can do to facilitate some sort of visit with my mother is to stop back at the apartment after every loop and try to bribe Boo to come inside.  Not bath nor Burger King is temptation enough – and forcing him would mean a huge aggression episode the likes of which none of us are willing to cause or endure.  And so we pause in the driveway and my mother comes out.  Sometimes Jonah will put the window down and we will prompt him to wave or say “Hi, Grandma” or parrot back whatever script we want my mother to hear.  Wish she could hear.  Thank you, grandma.  Thank you for ritually packing us all fresh sandwiches, chips and drinks every week.  Thank you for picking up mama to drive an hour and a half each way to sit in an empty apartment, visiting with me through a car window for a minute or two, because you love me so much you’ll do whatever you have to just to see me, hoping I’ll be happy or will want a kiss.

On Thanksgiving, Andy drove Jonah up to my mom’s house, just like he’s done every year for the past 6 Thanksgivings since Jonah’s been at Anderson.  Always Jonah loves grandma’s house.  He jumps out of the car and runs in, bursting through the door to pace around and survey his surroundings.

But not this year.  Even after that long car ride up here, he wouldn’t get out of the car.  My father arrived just as I was getting into Andy’s car to take Jonah for a ride to see train.  We called out the window that we’d be back, and my dad went inside to wait for us.  Jonah smiled, a big smile, when two trains came by, once we got to the Voorheesville tracks – but when we drove back to the house, Jonah still refused to come inside.  No grandma.  More car ride.  Awkwardly we all stood in the driveway, my father, my mother, and me – speaking to Jonah in turns and making sure Andy had all his Thanksgiving food my mother had prepared in Tupperware containers.

Andy and Jonah drove away, and my parents and I went back inside.  My mother and father tried valiantly to keep some conversation and normalcy in the day,  but I just sat there silent and crying, the tears coming against my will, hot and unchecked.  After just a short while I apologized and told them I couldn’t do it, I had to leave.  I drove home to eat my own portion of yummy Thanksgiving food and then, exhausted and sad, crawled into bed.

My mom and I didn’t drive down to see Boo again until today.  Again, Jonah just wanted car ride – only this time he got really sad and started crying as well – huge, gasping sobs.  I turned in my seat, gave him a clean blue t-shirt rag for his face, and held his hand in mine.  He didn’t resist.  He felt along the length of my hand with both of his, grasping my fingers, crying in earnest.

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I asked him to tell me what was wrong.  I asked him several times, in all different ways, hoping he’d offer a clue.  Was he in pain?  He never tells us when he is hurting, but he’d just had yet another laser operation a few days ago, to alleviate the pressure in his left eye.  It shouldn’t be hurting him today.  And he seemed fine when he first came out of his residence on the campus.

And so he wept, and I just held his hand.  Andy played some of his favorite music, and eventually Jonah calmed down enough to gently push my hand away and request Tom Pah-dee (Tom Petty), Public Enemy, and Prince, in that order.

After three trips and visits back to the apartment where grandma came out and said hello, I finally got out of the car, kissed Boo, and waved goodbye.  My mom and I drove home, mostly in silence, feeling how completely surreal can fill a car like heavy smoke.

What more can be taken away? Even as I ask myself the question I hear the answer. What if, one day, Jonah refuses to leave his residence for our visit?  What then?  They don’t allow visiting in the houses.  There’s a visitor’s center on campus with mock apartment set-ups that seem really nice – but Jonah’s never wanted to go there.  We tried it once and it was a disaster.  And anyway, even when he was going to the park or down to the dock, he still wanted his car ride and to get off campus first.  Can we visit him on one of the campus playgrounds?

Tomorrow I talk to the school district about the possibility of Jonah attending the Kennedy Krieger Institute for their short-term impatient program.  And I probably will call Jonah’s caseworker, too, about how home visits have been deteriorating.

Maybe they will have some ideas.  Me, I’m fresh out.  And done writing about it, for now.  If I do not post again before Christmas, I wish you all happy and blessed holidays, filled with joy and hope.

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On Tuesday, Jonah was taken back to the hospital, this time not only because of severe behaviors but also because he seemed to be struggling to poop and he looked pale and acted really lethargic.  When they called me, I decided to drive down.  I left work around 11am and when I got to the hospital in Poughkeepsie, Jonah was asleep under the covers with a pillow over his head.  All I could see of him were his sneakers, still on his feet, at the bottom of the bed.  He has three teachers in his classroom of 5, and one of them was there with him.

They had taken an x-ray of Jonah’s tummy and found impacted poop, so they woke him up and we coaxed him into drinking a seltzer-like laxative.  He was all sweaty from lying in his clothing under the covers and he looked at me in amazement.  “Car ride,” he croaked, more a statement than a question.  His teacher was awesome with him, helping to keep him calm and telling me how loved Jonah was at Anderson.  “I’m not just telling you that because you’re his mother,” he assured me.  Poor Boo was bored and confused, but after another hour or so he finally pooped and they let him go back to the residence.  I drove home in a daze.  Before I reached the house my car started to shake.  I couldn’t get the hood open to look at it, so I dropped it off at the shop.  Turns out they had to break it open to get in the car.  It was some crappy icing on my shitty cake.

Yesterday his main classroom teacher e-mailed me and was so kind.  She asked what she could do to help and if I had any questions, and she said Jonah had a good morning (and included two pictures to show me).  I am appreciative.  I am grateful.  I love that Jonah has teachers, specialists, therapists, direct care providers, and other workers who watch over him with such compassion and caring.  Were it not for all of them I could not do this at all.

Got the car back last night, and this morning Anderson held a meeting about Jonah with his behavioral specialist, his psych doctor, teachers, and nurse.  They called me to join the meeting and told me he was on his way back to the hospital for another psych evaluation after 12+ severe aggression incidents this morning.  And so this is hospital visit #3 since Monday, and it’s beginning to feel an awful lot like this time last year.

This doctor is a new one, and she asked me if I thought Jonah might be bi-polar.  “I tend to think there’s a co-morbidity with something,” I answered, “whether it be mental illness or seizure activity.  Something is going on.  There is never an antecedent.  You’ve charted every possible thing from bowel movements to times he eats and sleeps, for five years straight. There is no discernible pattern. ”

Her answer, as it has been before, is to raise his level of medication (Clozaril) while adding a prn of Klonopin  (as needed).  She suggested the possibility of adding Lithium, but doesn’t want to do that right away.

I have read (and I really appreciate) all your comments and well wishes.  I will try to come back to FB and re-join the Extreme Parents group so I can gather info and exchange ideas with other parents who’ve had experience with Kennedy Krieger and severe autism with aggression.  Andy and I are working through disagreements about what to do here.  Sending Jonah to KK would be a huge thing.  Just the thought of transporting him there is a seemingly insurmountable obstacle.  We want to make sure we are doing what is best for Jonah, both in the short and the long run.

I don’t want to go through what we did last year again. But it looks like that’s what’s fucking happening and once again we find ourselves in the frustrating position of having exhausted all ideas and resources.

When I reach out to the “experts” I find and they start asking me things like “What are the specific behaviors and when do they most likely occur?” I want to bang my head against the wall – not because I do not appreciate the attempt to help us but because people never get how far beyond the beyond we are at this point – how we are breaking new ground with this child and his behavioral (and physical) health.

How we’ve already tried that.  And yes, we’ve already looked at that.  And then there is silence, because nobody can chart us a path through this kind of journey, once they realize we truly are in a territory they have neither seen nor can understand.

We have to do it ourselves, and it’s scaring me to death.

I have been going to work and coming home and going to bed.  It’s like I’m a device on low battery that you’ve got to use as little as possible to preserve its life.  I am angry and I feel helpless.  I’m shaky and sad and frustrated and pissy.  I’ve been depressed lately anyway – I usually am this time of year – and I’ve thought that Jonah’s behavioral crises at the same time last year and this year might be something seasonal.  But mostly I’m staving off panic, a deep and unwavering fear.  There is no afraid of.  There is only the being afraid and the trying not to be afraid.

A waking life of fighting the fear, and a grateful yielding to sleep.

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the blue shirt rag

Yesterday Jonah played the blue shirt rag; that is to say he blubbered into two rags, one after another, both made from Andy’s blue t-shirts irreparably torn in an aggression.   There are plenty of t-shirt rags as Andy has sacrificed many, many shirts in Jonah’s attempt to turn them, one by one, into Incredible Hulk Halloween costumes.

And Jonah nearly often requests Andy change his shirt.  “Blue shirt?” he demand-requests, leading his father to the bedroom dresser t-shirt drawer and rummaging through to find something blue.  Always he wants daddy in a blue t-shirt, never any other color – though what passes for blue, some days, is more like grey or faded green.  Daddy only has so many shirts to destroy, and only so many of those are blue.

As a result, poor Andy gets a lot of t-shirts for his birthday (coming up soon!) and Christmas and Father’s Day, all destined to be worn and ripped in relatively short order.

So yesterday, yeah.  The blue shirt rag.   In what I considered a behavioral triumph, Jonah worked himself into a frenzy on his car ride, crying out “no school tomoww-ow!” over and over until he was a slobbery snotty mess.

Andy pulled over quietly and handed him blue rag one while I filmed a bit of the scene.  I call it a behavioral triumph because Boo only kicked twice, and half-heartedly at that, before indulging in a crying jag instead.  Poor kid.  But he worked it out, God bless him, despite a great mess of snot and tears.  Andy and I mostly sat quietly, waiting, until there were long enough pauses between the wails to insert a calming word or two.

After deeming blue rag one full to capacity, Andy whisked it away, handing Jonah blue rag two. 

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So emo.

“Here,” he says, making as if to hand me blue rag one.  I stare at the goobery glob of it and we laugh.  Jonah gets his shit together in the back seat with blue rag two and Andy tosses blue rag one to the floor. 

After this Jonah is fine, as if he needed to purge the sad, sad notion of school tomorrow before getting on with his day.  After all, who among us can truly say they have not ever dreaded school tomorrow?

Thank you, peeps, for the rallying cries that leave me strengthened and fortified.  Like Wheaties.  And O, Harlow, how you do go on.  I hear you.  Who’ll stop the rain indeed?

I appreciate it all.

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In five days, on August 16, it will be the fifth anniversary of Jonah’s departure from home.

That’s more than a third of his innocent little life, and I sit here and type this through a stormy mess of emotions.

For some reason that one comment from the other day echoes in my head, over and over.   I can’t be bothered to parent.   I can’t be bothered to parent.   I can say “haters gonna hate” and try to brush it off, but the troll’s words have gotten inside me, wringing my heart, making it pound pound pound in my throat.  I kicked my son out.  I can’t be bothered to parent.  The words are not true and I want to stop hearing them but I don’t know how.  I heavily edited my “about” page to more clearly define why we had to send Jonah away, and even as I wrote the new copy I asked myself why I felt the need to justify our actions.

There are many answers to that but the most important answer, I suppose, is to educate.  The idea of residential care for individuals with autism is repellent, and I get that.  It’s important to know the why of it all, lest they judge not only me but all others in my situation, lest they misunderstand the reality of residential care in the 21st century.  Jonah’s school is not an “institution” – it’s a huge, gated, beautiful campus with individual houses and a school building.  The caregivers and teachers are phenomenal; they are Jonah’s best friends and companions, advocates and educators.  These aren’t justifications.  I do not need to justify what was not our choice.  We didn’t choose this.

Parents who place a child in residential care aren’t throwing their kid away, I assure you.  Because guess what?  Even if there were parents who wanted to “throw a child away,” the openings at these places are so valuable there wouldn’t be availability unless the child’s home school district deemed it absolutely necessary.  The school district pays for it (in New York State, anyway) and moneycoin is, of course, a huge determining factor.

I just wish I wasn’t so hypersensitive. Or maybe it’s not that.  Maybe I’ve slowly developed an invisible shield in order to move forward through life and when trolls knock, the shield is shaken, endangered, a hole poked through, the feelings rushing in, too many too much too painful too real.   All the feelings I usually suppress.  Ignore.  Internalize – until I am, as I’ve described before, bow-string tight with bones gone brittle, shoulders hitched up, breath after breath after breath held…suspended…each new breath a hesitant, unwilling step into more future.

For five years I have lived this bizarre life of mother-not-mothering.  For five years I’ve spent most of my energy running away from how it feels never to watch Jonah sleep…how it feels never to be there when he awakens….never to know what it is to raise him.  It’s the most helpless kind of helpless.  I suppose my mind has created its own protective pathway to enable me to live this way.  I imagine my heart’s new primary purpose is to forget all the days we spent together, and what it was to shape his Self, and how I fell in love with his role in my life as my Boo.

I don’t know anyone who is in my situation, with their only child living in a residential school for autism, except Andy.  But we don’t talk about it, and so that most helpless kind of helpless is a lonely kind as well.  From a singular perspective I attempt to tell our tale, and like as not I speak a language so foreign it’s lost, dismissed, or plain old misunderstood by some people.

And just like that I’m off to find the Animals song, link to it, and look up the lyrics.  Is it schizophrenic thinking to feel how those lyrics apply to me?  To type the words out in paragraph form because I identify?

I only know this diversion serves as vacation from all the other crap I’m always on about.

“Sometimes I feel a little mad.  But don’t you know that no one alive can always be an angel?  When things go wrong I seem to be bad, but I’m just a soul whose intentions are good.  Sometimes I’m so carefree, with a joy that’s hard to hide, and sometimes it seems that all I have to do is worry, then you’re bound to see my other side.  But I’m just a soul whose intentions are good; oh Lord, please don’t let me be misunderstood.”

Why care if I’m misunderstood?  Why react so viscerally to the critic or the cruel?

Either way, I’ve been hibernating and closed off.  My mental energy is always working to stave off thinking things I don’t want to think.  I sleep and I sleep.  One day this week I came home from work and took a nap, only waking to eat before going to bed for the night.  I’m making up for those sleepless nights with Boo, back when I was a mothering-mother.

Jonah’s school called me today to join a conference call and approve a proposed increase in his dosage of Clozaril, since the drug is helping lessen the frequency of his aggressions but it’s not taking them away.  We talked about how he’s refusing to go to school (though they always get him there by 10am or so) and then I asked if anyone there had seen Jonah today.  One person had, in the classroom, and she described how he was making a great racket of noise.  He also had a behavior management at his residence this morning.  They didn’t disclose the severity of the behavior and I didn’t ask.

It’s difficult to remember a time when I did not embrace ignorance.

I guess maybe, well, five years ago.

This is another one of those blog entries I nearly almost always type with fingers slamming-hammer-quick on the keys, stream of conscious unthinking – and then delete.  But I think I’ll publish this one.

If I go away for another while, however long, I wanted to tell why.

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Some of the people at the Anderson Center for Autism will email me every so often to check in and see if I have any questions or concerns.  More often than not, I’ll answer with just a brief note of appreciation, but sometimes I will ask a question or express a concern.

This past week was one of those times.  When one of Jonah’s behavior specialists emailed me, I directed the inquiring behavioral specialist to my broken post, explaining that I’d been depressed about Jonah’s seeming stagnation and asking for glimpses into Jonah’s life and happiness.  She emailed me back and asked if I wanted to talk.  We scheduled a time, and she called me.

I wonder if every parent she calls must force words past a throat tight from trying not to cry.  It seems I am always crying on the phone to the Anderson folk.  Hell, I don’t think they’ve ever heard my normal voice.  Anyway, we spoke, and she was kind, and said she saw a lot of hope for Jonah.  She told me he had, just that day, approached a new student in class who was sitting on a beanbag.  Jonah sat right down next to him, smiled, and was calm.

This behavior specialist knew I needed her to tell me something good.  And she kept on knowing it.  The next day, she sent me this email:

Hi,

I just wanted to send you a quick note.

Jonah went swimming with his classroom peers today!  He sat the edge splashing and playing for about 10 minutes before he walked to the deep end and finally jumped/dove in!  He swam to the stairs, got out, dove in, again and again!

He was laughing and enjoying himself!  Staff said the last few days at school have been really positive!

Best,

R

I felt the excitement of those exclamation marks.  Easily I pictured Jonah’s lithe form, diving effortlessly and gliding far under the surface of the water to pop up right at the ladder.  I sent R a thank you that could never hope to express how much the email meant to me.

Sometimes I feel envious of the people who get to witness Jonah’s joys firsthand.  I get so few glimpses of him that I over-record him when I see him and then watch the short videos over and over, as if to memorize his smiles and laughter.  It’s a strange thing to know that a whole group of other people have way, way, more interaction with my son than I do; a myriad of mundane activities are supervised and guided by his Anderson “family,”  for the past almost-five-years.  But all that time has trained my mind to accept this strange mother-not-mothering existence.

They’ve raised Boo’s dosage of Clozaril by a very little bit, and so maybe that’s the reason for his recent positive days.  For all I know, as I type this Jonah is mid-attack, biting and kicking and hitting.  But for now, today, I will read R’s email again and stay in that place and those moments, enjoying his time at the pool.  It’s a good place to stay; as transient and fleeting as it may be, it happened, and no one can force me to focus my gaze and thoughts elsewhere until I’m good and ready.  Even the email in my inbox (the one always from the same person, always to notify me of an incident of aggression) can sit there unopened for as long as I like.  I do not have to move on from Jonah’s swimming pool fun and nothing can make me move on from it.

Tomorrow I may be ready once again for the roller coaster.  Today I’m sitting on the bench and letting other people ride.

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elton jonah

“So where to now, St. Peter?  If it’s true, I’m in your hands
I may not be a Christian, but I’ve done all one man can
I understand I’m on the road where all that was is gone
So where to now, St. Peter? Show me which road I’m on.”

~ Where to Now St. Peter?  by Bernie Taupin/ Elton John

“Somehow, something always happens just before things get to the very worst. It is as if Magic did it.  If I could only just remember that always. The worst thing never quite comes.”

A Little Princess by Francis Hodgson Burnett (one of my top 5 favorite books of all time)

So I escape into movies a lot, and last night decided to watch Dog Day Afternoon.  I hadn’t seen it in years, and forgot about the opening song – Elton John’s Amoreena.  Damn, it sounded good.  So good I listened to it over and over, then spent the rest of the evening delving into Tumbleweed Connection.

And I remembered something really, really important – that music can and will save me, every time, if I let it.  From Elton John I moved on to Guster, as I nearly always do ever since I discovered them early in 2003, and then a whole bunch of other stuff.  I don’t have or watch television at all, so I fill in the spaces with movies and music.  But sometimes I forget to listen to the music.  Then I hear something, and it hits me, and I’m reminded of its power.

And I let something else get completely by me — the fact that when we are on the car rides with Jonah, he immediately says music on?  Music is the first thing he asks for, every time.

While bemoaning Boo’s loss of interests, I somehow forgot about music. He still requests certain CDs and recites preferred tracks.  He asks for radio and then, when he wants a new station, for other radio.  How many videos have I posted with him rocking and jamming to his music?

Maybe when I see him tomorrow, I should sing.

There’s one new go-to song/video I want to share – George Ezra’s Listen to the Man.  I heard the song before I saw the singer and couldn’t believe what a youngster he is – and the video, starring Ian McKellen, is really very cute. 

Some new snapshots of Boo.  If I’ve got to be broken, I can at least be broken with my music and my pictures and my peeps (thank you, commenters all from yesterday – my fellow disbelieving & discombobulated).  You guys rock.

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broken

The months’ events blend and pour together, watercolor spills on pages.  I want the resulting mix to form a picture or a tale to tell, but it’s really just a sloppy mess.

That medicine…the Clozaril…it seems to be working still.  Kind of.  But nothing has been able to exorcise the aggressions.  He might be attacking less often, but he’s still attacking.

Meanwhile, seemingly all his interestseverything that’s provided me with amusing anecdotes to write about for the past five years – have faded away.  There’s no more asking for “Oompa Oompa” and laughing hysterically at the indignant passion of Grandpa Joe.  No more begging to walk on the dock by the river and then jumping in to swim, all silly and happy.   No more wanna go park, always choosing the first swing, asking for more push, jumping off to head down the path and explore.  No more watching YouTube videos of trains, entranced by the rush of movement and sound.

Evidently it’s become too much to expect Jonah to enjoy doing anything at all, and that’s a hard truth to swallow.

Yesterday, Jonah’s new psychiatrist called me.  She was in a team meeting with Jonah’s nurse, case worker and a few others.  She told me they want to increase the dosage of Clozaril.  I asked questions I suspected she couldn’t answer, but I asked them anyway.  Can they make the aggressions go away?  Will enough Clozaril stop this?   Do we need to trade his entire personality for it to happen?

My questions are jokes with shitty punchlines.  I have learned not to hope anymore.  Hope gets smashed too many times and expectations are brought down so many notches that I find myself beneath the surface where it’s always cold and dark and still.

Andy and I had one baby.  We dreamt of all the things he could be and do…all those wonder-filled possibilities taken away, one by one.  We dealt with it.  Okay, so he isn’t going to converse.  And okay, so he isn’t going to make friends.  He isn’t going to play on softball teams and tell ghost stories at sleepovers and fall in love.

I could always see the bright side.  I’d say to myself:  At least I don’t have to deal with competitive, gossipy soccer moms.  I won’t have to find a way to comfort him when world events are frightening.  I don’t have to watch the inevitability of innocence slipping away from him as it does from all of us who grow and learn and mature in the land of normalcy.

But then the possibilities taken away began to outnumber those left over.  Because he became aggressive, he wasn’t allowed to attend the beautiful autism summer camp in Altamont with the giant pool anymore.  Because he attacked others, he could no longer go to the fun after school program at the Center for the Disabled.  He’d had to leave his wonderful local school.  His mama and daddy.  His home.  And now he is too aggressive to stay at the residential school which he was sent to for being aggressive.   He is there today only because there is nowhere else for him to go.

On Sunday mornings, My mother and I drive down and meet Andy at his apartment.  We drive to Jonah’s school and we call Jonah’s residence (I can never really call it his house, let alone his home) and someone walks him out to us.  We are usually able to get back to the apartment without incident and sometimes Jonah will get out of the car and come inside.  Usually my mother has brought him something yummy to eat.  Usually he eats it, making a mess, occasionally throwing some of it at one of us.  Always he asks for car ride or mama in the front.  My mother stays in the apartment.  Once the three of us are in the car, there is no stopping or getting out of the car.  Jonah requests music and the volume of said music.  We take “loops” – specific cyclic driving routes past quaint restaurants and a giant fairground and the famous home of a president’s mistress.

If we are lucky Jonah does not attack us.  If we are lucky we do not need to pull over — and if we do have to pull over, we are lucky if nobody calls 911 when they see us and we do not have to explain ourselves to the police.  If we are lucky we will return to the apartment and Jonah will go back inside for a short while.  If we are lucky my mother and I will drive home a few hours later without tears, without bloody bite marks or bruises or a burning scalp.  Andy’s arms are a permanent criss-cross of scratches and scars.

I do not write about it for attention, or to seek sympathy.  Those things are useless.  I do not write about this to complain.  Complaining implies that someone can do something, that there is a repair that can be made.  I write because I started something when I innocently typed out my first post in August of 2010, and people have told me they are interested and they care.  People are dealing with similar shit and need to know they are not alone.  I don’t think it’s fair to disappear.  Yet in the midst of what feels like limbo, sometimes there just isn’t a lot I want to say.

Ours is a purgatory from which deliverance is, finally, neither expected nor anticipated.

I am grateful that Jonah is safe, and well cared for, as happy as an autistic child, plagued by aggression and drugged into God-knows-where, can be.  I can’t speak for Andy but I do know he is grateful too, and also uncomplainingly resigned to his fate.  He is Jonah’s father before everything else, and he has chosen that life, and it has been tremendously difficult.  It would have destroyed most other people I know.  At least he has a girlfriend and they are in love.  He deserves the best in this life.

I think about Andy lately, wondering at the wreck I made of his life.  I think about how he was my husband and now he isn’t, and how if I could only go back I would honor the intended lifelong bond of that and stick with him no matter what.  A few weeks ago, I bought the kind of shampoo he used when we were married, to capture even just the scent of that lost life.  Am I romanticizing it?  Am I wasting my time with if only?  Yes.  Yes, of course I am.

For a long time I’ve grasped at ways to manage the emotional toll of both my own choices and of circumstances over which I’ve had no control.  For what seems like forever I’ve grasped.  And I know better than to grasp – hell, I’ve read plenty of Thich Nhat Hanh.  But I have so often not been healthy, or wise, or even rational.  Some of those grasping ways I shared here – attempts at relationships, vacations to new places, things to build on or look forward to.  Places and people from which I sought excitement and happiness and hope.

But sitting here now, today typing this, I feel like I’ve finally, conclusively broken.

Too many cracks have converged – in Jonah’s life, in my life outside of him.  In the whole world.  As I type this, the death toll is still rising from the latest almost daily violent tragedy – this one a terrorist mowing down dozens of people with a fucking tractor trailer.  My oldest friend is 91, and it’s gotten to the point where I envy her for being on the way out of this world.

Should I be at the end of my blog if these are the things I am typing now?  Who wants to read doom and gloom?  It’s what I’ve felt for a while, so I haven’t been posting.  I’ve been writing the posts, though — dozens of blog entries, all alike, all deleted.  Maybe I’ll actually publish this one.

Maybe it’s just today that I’ve run out of ways to spin it.

There was one miracle, though.  I saved it – the best – for last.  it’s Jonah’s school photo, taken by Life Touch, where he looks positively beatific.  See for yourself:

June

How they got him to sit still, let alone pose and smile, is the mystery of the millennium.  In my life and under our current circumstances, I call that a miracle.  I pull the photo out constantly and look at my beautiful boy.

I love him more than I am broken, even.

Maybe that’s the very thing that keeps me pushing on.

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