When finally the doctors sigh,
speaking masked amongst themselves,
and cut you
howling
out of me, I am but a writhing animal,
drugged and brazen-blind by dazzling alien lights.

Then there are pillows, and silence,
and you are sleeping on my chest

and suddenly I have a star, and the moon,
and everything else unceasingly celestial…
my view so clear I memorize the shape
of every constellation.

For an only child like me it’s a tough pill to swallow sometimes.  It isn’t at all about me.  And yet, can I be relieved of my role in all of this?  Of course not.  Jonah needs his mama.

Still I sometimes think:  I can’t live this life anymore

And:   What a nice hot day to park the car at the top of the Rhinebeck Bridge — so perfectly inviting for suicidals – no barriers to your leap, yet reminding you every few hundred feet or so that LIFE IS WORTH LIVING.  I know I have mentioned this bridge before.  I’ve always wanted to fly, and that view is so spectacular, and if I ever did come to that fine line and cross it, I think that would be my place to fly-bye

And:  I wonder if other people have places in their minds, like I do.   My place is like the cyanide pill they ostensibly give you when you go up in the space shuttle.  It is a choice you may never have to make but one that’s comfortingly there nonetheless

I still, though, think:  I have to do whatever it takes to ensure Jonah’s health, education, happiness, and nurturing.  I must ensure everything.  Some of that everything is making sure things can stay the way the are, and it looks like things are going to need my help for that to happen

And I berate myself:  You ain’t going nowhere, fool

And I can dance around things that were said this weekend, and all the millions of ways, as usual, in which I was spectacularly weak.  But I’ll post pictures too, for Jonah was mostly good, albeit scattered and frenetic.

It was a sunny day, almost too hot.  A beautiful Saturday, and a good portion of Jonah’s day and mood mirrored that.

Andy was kind enough to drive Jonah up to visit us at my mother’s house.

my mom’s next door neighbors kindly let jonah use their play-set and pool, once it’s opened. jonah asked for “Pool?” a dozen or so times.

At home way at the top, my climber-boo

hey mama!!! hey mama!!!

Eventually he wanted to go see train so we piled in the car, Jonah singing along to the Top-40 Andy’s got on the radio.   We were relieved to see the green light down the tracks meaning a train is coming, so we pulled into a parking lot to wait and watch for it, like we’ve done hundreds and hundreds of times before.

This time, though, he got scared of the train after a few seconds.

This was the last of the pictures for the day.

Out of nowhere he grabbed for my hair.  I know what to do when someone pulls your hair (grab their fist and pull it in toward your head) so it wasn’t a big deal.  Andy got out of the car to let me out of the car, and then Jonah burst into tears, sobbing and upset.  Within minutes, though, he was okay and we were able to say bye bye to the train (thank God it wasn’t a long one) and go back to Grandma’s for another shower.  His beloved train reminded him of how much he misses home?  No.  Don’t invent things inside Jonah’s head, I tell myself.  You’ve got enough troubles inside your own. 

Today M and I went on a long Sunday ride, just like in the olden days when it was deemed neither wrong nor unusual to do so.  When we got home I planted flowers in the God-awful hot for about 13 minutes until I felt I would die.  I thought about Andy, and how unless I am mistaken he is working for somebody today doing some mulching under this same heat, and how under that same sun too my boy probably asked for pool ad infinitum.

Tomorrow I have to go back to producing numbers; here I can produce words.  It’s a fine line, my tightrope.  Sundays are difficult.  And I only took 3rd place in a “query letter” contest I was hoping to win.   And I’m not schooled in query letters.  Looks like I have some work to do.  First place was the opportunity and $500 to self-publish.  

I don’t really want to self-publish anyway.  Isn’t that, after all, what I’m already doing?

Anyway.  Jonah has his daddy close-by.  Today, after all that hot work in the sun, Andy came and got Jonah and kept him for another part of the day.

“He was fine,” Andy told me on the phone. “He had a fun day.”

For me, for now, it is enough.  As usual it is still only early evening and I am bone tired.  I imagine Jonah settling in to sleep.  I miss watching him sleep but imagining it is sweet — I can use memories and visions and dreams.  It is good.

“So I would choose to be with you
That’s if the choice were mine to make
But you can make decisions too
And you can have this heart to break

And so it goes, and so it goes
And you’re the only one who knows…”

And So it Goes, Billy Joel

The phrase “and so it goes” appears 106 times in Kurt Vonnegut Jr’s book Slaughterhouse Five.   The story continually employs the refrain “so it goes” when death, dying, and mortality occur, as a narrative transition to another subject, and to explain the unexplained. (from wikipedia)

This morning was the first of 5 doctor visits for Boo up here in Albany…and each time he’ll be escorted by his peeps, E & J.  Today we saw Dr. S, the glaucoma doc who is borderline strange but quite efficient, matter of fact, businesslike,  and nonplussed * unaffected by Jonah’s colorful personality. 

The nurses and staff all know us by now and are very kind to Jonah.  When we go there we wait in the hallway outside so Jonah can pace around, and they come out to get us when doc is ready.  In the meantime Jonah frolics in the hallway, crouching and running and shouting happily.  He loves E & J.   I love them too.

J put gloves on Jonah, and they played high five and gimme the pound, bumping fists.  Jonah’s getting to be such a good boy at his doctor appointments.  He is brave and sweet and funny.  Even if I’m under some sort of mother-spell skewing my perception completely, it feels good to have seen him, all lovey and silly.  Precious Boo.

He’ll need another eye operation; they want to take the Reticert implant out.  It’s been there 2 1/2 years now and Dr. S wants it out soon, so Jonah will have another appointment with Dr. S, but first an appointment at the pediatric rheumatologist, a pre-op appointment at the eye surgeons, then the surgery itself, then follow up appointments, etc.  Can you imagine if I didn’t have E & J?  Andy or I would have to pick him up and drop him back off every time.  The transportation to and from doctor appointments, paired with two individuals like J & E, is an invaluable service and responsibility.  I have no idea how they do it.  Thank God they do.

You probably can’t tell, but he’s laughing his head off here, wearing his exam gloves and knocking on the door three times, shouting “knock knock knock!” each time.  Little peanut butter, E calls him. He wanted me to give him noogie and knock knock knock lightly on his noggin, silly with giggles and ready for mischief.  Wan go van? he’d ask J on occasion, and J would distract him with lists of delicious things to eat:  french fries!  pizza!  bleu cheese! circle pepperoni! 

When it was time to go I kissed Jonah soundly as he settled into his cushion-y nest they’d made for him in the back of the van.  I entrust him to others. 

I have to, but with E & J, I am actually glad to. 

* I believe that most people misuse the word “nonplussed” – including me.  I always thought it meant “unfazed.”  Turns out it means exactly the opposite.  

So it goes.

Jonah (read my mother) also got me a gift card to TGIFriday’s, and a yummy box of chocolates.  And Jonah (read M) got me a beautiful jewelry armoire, and Jonah (read my little “adopted daughter J”) sent me a dozen roses!

My dad sent me a simple, beautiful card that touched my heart.  Friends are texting me, e-mailing me:  Happy Mother’s Day!

Jonah sure is generous, through the hearts of so many who wanted to give him the voice to tell me he loves me, on this first Mother’s Day without him.  Thank you, little Boo and all who speak on your behalf.  I love you so.  I do not want to tell you how I cried bitterly into my pillow this morning, feeling sorry for myself because my only child is far away from me.  So I will tell you instead how grateful I am to have my beautiful boo, my sweet precious boy.  I will tell you it is not even noon and I have wiped my tears and planted seeds in my garden — morning glory seeds to climb and wrap themselves around things.  Soon I will go outside and play more in the earth and dirt, turning over soil and, without getting all weird about it, allow the sun and earth to mother me.

Yesterday was also a beautiful day for Boo to enjoy – we did all Jonah’s favorite things & haunted all his familiar spots:

Sipping on some strawberry milk…in the tub

Swinging high on his favorite swing. Luckily, no one else has ever been on it when we’ve gone to the park!  There’d be trouble…

Looking longingly at the Hudson River. He’d get naked, jump in, and swim around for a long while if we let him…it was 84 degrees, too…

More longing for the water…

He finally leaned so far off the dock that he could swish his hands in the water…

…but daddy was right there. I think if they fell in Jonah would be rescuing Andy!

…and of course among the pansies Valiant Valerie whispers “Happy Mother’s Day!” to me, her adopted mommy…and to my own mom – to all mothers and not-mothers everywhere…to those who wish they could be mothers, and to mothers who have lost children…to those who have chosen not to have children, and to those who have made adoption plans for children they could not care for….for all the mothers crying today, for all the mothers laughing today…for all the children and adults who have lost their own mothers…

Have a happy, blessed day anyway, everyone.

He requested “Noogie?” right away.  I guess that’s how you spell it – when you rub your fist into someone’s head.  He loves playing knock knock knock on his head too, and though it had fallen out of fashion, his new gimme-the-pound (where you bump your fists together) has brought back the memory of his sensory-input fiesta.

Speaking of Fiestas, it is Cinco de mayo.  “Say cinco de mayo,” I told Jonah.

“Cinco tomorrow,” he answered with his big grin, shaking the maracas I’d brought him.  The pictures tell the story, a good one today, thank God:

(Watchdog Wally’s holding the maraca)

He’s shaking the maracas so fast that the one is blurry…

My big Boo, watching his beloved water…

Yesterday when we sent to see Jonah he was a very good, happy boy – and we did the usual things but he was having so much fun, laughing and singing, giggling and lovey.  I took a few great pictures that capture his joy, and the feel of the day…

My mom drops me off after the visit and we look at one another:  my long, bony hand holds her long, bony hand — and we say, sometimes in tandem, “Thank God.”  I remind myself not to hope.  Wait, that’s not quite right.  Always there is hope inside me.

It’s more like the expectation of permanence I need to dissolve.  I am so grateful.  Now.  Now.  I am grateful now.  Stay in this place, Amy.  It’s the only place to be, really.  Anything else is an illusion, the voice inside tells me.

“You must live in the present, launch yourself on every wave, find your eternity in each moment. Fools stand on their island opportunities and look toward another land. There is no other land, there is no other life but this.”

~ Henry David Thoreau

As of April 20, he’s retired.  And not just retired, but moved to the (gasp) South. Ugh.

My father and I went to his last Mass, the Sunday after Easter.  I elbowed and excused my way into Father Noone’s communion line.  I’ll be damned (pardon the phrase) if I was going to take communion from some layperson Eucharistic Minister – this day, this last Mass, I wanted to take communion from him.  (I have no business taking communion at all, really, but I like it and I take it and I think God is okay with that).  And so I did.  There was a moment when Father and I locked eyes, and it was one of those rare real moments.  A grace-filled moment of understanding, with a little mourning, and pure Christian love.

Father Noone married Andy-and-me (inside joke to the one who’ll “get” that), and he baptized Boo; I remember Jonah pitching a fit and fidgeting through the whole baptism Mass – until Father Noone poured the holy water on his head.  Then he  was fine, for a while. 

Jonah’s first water fun! 

I was the one who cried.  I remember feeling incredibly moved…the baptism sacrament is so sacred and beautiful, and Father Noone made it special.  I’ve come to appreciate Mass again, though I became a Father-Noone-Catholic, if you know what I mean.  You’d have to find me another priest like him, and you’d have a big challenge ahead of you if you tried.

So the other thing is they went and changed parts of the Mass.  If you haven’t been to church in a while, all ye Christmas and Easter Catholics, be warned.  You don’t even get to say “and also with you” – which was one of my favorite parts.  I said “and also with you” anyway, even though they’d put the new follow-along words up on a screen for the changed parts.  So that was a little strange.

St. Francis de Sales isn’t St. Francis de Sales anymore, either – two parishes merged into the St. Francis de Sales building/church, and they renamed the church Christ Our Light.   Sounds more Protestant than Catholic, not that there’s anything wrong with that.   So Father met the challenge of merging two parishes with aplomb, and led his new flock well.  He’s the kind of a humble shepherd who never holds himself above you, and he’s got this great, slightly irreverent, sense of humor.  I’m going to miss him.

I’m avoiding writing of Jonah.  He has not made it through many days at all lately without behavioral managements (the take downs) where he becomes suddenly and out-of-the-blue aggressive, biting and kicking and scratching oh my.

This blog is a record on skip.  They can’t mess with his meds right yet because he’s  going to be starting a new med to treat his juvenile arthritis.  And then they need to watch to see if the meds help alleviate the pressure in his left eye from the glaucoma.  And then they’re going to want to remove the implant in the eye, the one they put in two and a half years ago.

So I feel awful when they call of course and for countless reasons.  There isn’t anything to say.  No questions, your honor.

We can’t find a pattern, though we’ve been trying since he was six or so.  Maybe before that.  I’ve got it typed out somewhere in the Wayback Machine.  I can’t help imagining Boo in pain.  Some kind of pain.  And then trying not to imagine it.  Or wanting to fix it, and not knowing how.  Lots and lots of theories and not much proven, or else we’d all be on board.  Right?  I have no idea.  I really don’t.   I remember Dr. Reider’s wise words:  “Correlation does not necessarily imply causation.”  I doubt, and look for evidence.   Do I sound over-proud? – look where it’s got me. 

I just want my kid to be at peace inside.

Peace be with Boo.  And also with you.

A pretty co-worker comes into the kitchen, skirts me silently,
retrieves something from the fridge, and walks away. Invisibility.

My mother has just dropped me off in beginning-of-the-rain grey
after together we’d ushered my suffering sweet Sugar into Sleep.

I return to my cubicle, place the coffee down I am holding my breath
and on the cell phone a red light blinking blinking his area code

I dial into the voice mail it takes me two times, I hear Jonah is okay,
I hear significant incident hear how they tried to redirect him, keep him walking.
He was violently aggressive he needed a two-person takedown;
he likely hurt someone. More than one someone. Surfacing to bite.

Born of me who hated hitting, shrank from violence, submitted every time,
weak and yet I grew a wild white whale inside my womb, Ahab be warned.

It is the area code, and they are calling me to relate an incident.  When we hang up I call Andy and tell myself to just go back to work.  There isn’t anything I can do.

For years, behaviorists and teachers, psychiatrists, Andy, me – everyone – has been searching for a pattern to Jonah’s aggressions, a cause.  A reason for all this.  It isn’t who he is, the violent kid trying to scratch your eyes out.  It isn’t who he is.  It is as frustrating as anything I’ve ever known.  I don’t want to think about it today.  I want to know my son without having to fear him as well.  Thank God the world is catching on and more & more is being done for people with autism.

They say Jonah loves the new temporary house.  He can see the river and the railroad tracks, and right there you’ve got two of his favorite things:  water and train.

Jonah, at the glaucoma appointment, wearing J's sunglasses, playing it cool

I’m taking a couple days to go offline and see Guster (again) for my last concert this tour.  If I’m lucky, the dreaded area code will not appear on my cell phone until I return.  Be well, Boo.  Your mama loves you.

We all expected him to be thrown off by his temporary move, just the night before, to a different house for 4 or 5 months while Birch House is renovated.  But the caregivers know how to prepare the kids.  Staff took the children to the new house lots and explained over and over again about the move.

But you never know what’ll set Jonah off, and this kind of change seemed likely to have made him angry.

To be honest I really didn’t want to drive down at all.  After losing Sugar and spending a couple days in an “off” place myself, I hesitated to risk another bad Saturday, another violent visit.   My mom would have gone anyway; nothing keeps her from seeing Jonah, but she’s more selfless than I.  In the end I went with her;  I missed Boo awful too.  Plus, it was such beautiful weather so I decided to spin the wheel and hope it landed on GOOD DAY.

It did.  Jonah was happy and excited.  He and I sat in the back of the car on the way to Andy’s apartment, and he sang with me, played with his hands, and looked up front at daddy and grandma.

But he didn’t ask for “daddy in backseat” like usual.  He was content with mama.

We played where is thumbkin and I taught him how to be The Fonz.

Aaaayyyy!

Jonah wanted to kiss me lots.

He’s got this little game he plays where he asks “kiss?  kiss?”  and we move our faces in slowly toward one another until, at the very last moment, he smiles and I end up kissing his teeth.

“Yuck!”  I say with an exaggerated icky-face, which sends Jonah into hysterical giggles.

“Kiss?  Kiss?”  he asks again.  “Oh—kay”, I say slowly, “but only if it’s a real kiss.”  So he arranges his face into mock-seriousness  as we prepare to move in for our kiss but he just can’t help it — the sides of his mouth twitch in suppressed laughter and he and I both start giggling.

Of course everybody gets his or her share of “huck?  huck?” and real kisses too.  Hugs and kisses, bath, park, turkey sandwiches, black soda, Hudson-River-by-the-train-station:

Then holding daddy’s hand and walking back down to see Grandma again…

In the car he wanted “more kisses?” and it made my heart fill up with something usually not present anymore.

“Kiss hand?” he asked, holding his arm out –so I took his little hand and kissed it.

“Kiss cheek?”  he wanted next, so I leaned over and soundly kissed his soft-child cheek.

“Kiss quiet?” he then said, holding out his pointer finger.  I took his finger to my lips and kissed it, tilting my head at him inquiringly. 

Kiss quiet?

He held the finger up to his lips:  “sshhhh.”

Oh!  “Yes, Boo,” I whispered, smiling, admiring the clever way his mind constructs language, the way he is a new kind of lexicographer.  “Kiss quiet.”