Archive for April, 2012

To the best of my knowledge Jonah has been a very good, happy boy for the past 5 days or so.  Why?  Nice spring days again.  Playing outside, swinging high in the sunshine.  The right dosage of meds finally.  Divine intervention.  Right now I don’t care.

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

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and also with you

When I was 25 I applied for a job as parish secretary at St. Francis de Sales Church.  The pastor was Father David E. Noone, and the staff hired me while he was away in China.  He came back to the church, and to a new secretary.  We clicked and hit it off right away, and my years there were so valuable.  Father is a wonderful person in too many ways to get into here, but suffice it to say I’ve always looked up to and admired him.

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.

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When the principal himself at the residential school for autism
where you bathe live learn eat play please God are loved
calls my cell, I happen to be away from it. He speaks in an even tone.
I am upstairs pouring coffee comfort ritual routine into a blue mug.

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.

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I’m at work and my cell phone rings.  (If it’s the area code where Jonah lives now, my heart goes into my throat, even though they’re usually “only” calling to notify me, as they must, that Jonah was involved in an incident.  That means he probably scratched, bit, kicked, and pulled God knows how many people’s hair.  It means they had to physically restrain him to prevent him from hurting himself or others).

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.

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Yesterday’s visit with Jonah was awesome!

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.


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.”

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and she slept

In the Spring of 1999, Andy and I lived on the 3rd floor of a downtown Albany brownstone apartment building – before marriage, before Jonah, before either of us had turned 30.  One warm day, we opened the window and heard loud howling-meows in the alley below.   When we investigated we found a half-starved alley cat, ribs standing out from her fur, crying a desperate, determined call.  To this day I think she was calling me – the queen sucker for strays.   She ran over to rub herself on and around my legs.    Of course we took her in, Andy and I, and for a week or so she mostly just sat in the middle of our woven living room rug, still and silent, as if in shock.

Soon, she grew to like living with us – having food and care, warmth and safety.  She rounded out into a small but well-fed cat, and seemed so grateful – she never missed an opportunity to show us.    We took her to an awesome vet who guess-timated her to be 2 or 3 years old.  She wasn’t a pretty cat, but oh how she loved.  She was the sweetest thing, climbing in my lap and rubbing her furry face against mine.  Leaning into me, sleeping in Andy’s hair (really), purring at our touch.  We named her Sugar — not for her coloring but for her super-sweet disposition.

I’ve had my share of cat companions in my day, but Sugar’s been the sweetest, paws down.

When Jonah was born, Sugar took to sleeping in his crib.  By the time Jonah actually slept in the crib, he was 5 months old, and Sugar wanted to stay.  So together they slept.  We watched and, at first, worried, but they were just fine.  Jonah could roll over onto Sugar or pull her tail and Sugar stayed calm or got away.

What Sugar wanted more than anything in this world was attention.  She gladly sat in my lap for hours to be brushed or petted, purring loud and occasionally lifting her tiny face to mine for a kiss.   Her ideal companion, really, would have been an 80-year-old woman who’d gladly overindulge a needy cat in exchange for the kind of devotion Sugar loved to give.  I love you I love you Feed Me I love you was Sugar’s purr-mantra.  (She puked more often than we liked, but we  overlooked that stubbornly unfixable flaw).  Jonah and Sugar mostly peacefully co-existed.

But once Jonah started to get behaviorally aggressive, we knew Sugar needed a safer place to live, so my mother took her in, kindly giving her love and care.  Whenever I visited my mother I paid a special visit to Sugar too, holding the cat close in my arms and setting her down gently to pet her and listen to her rolling purr.  She came running at my voice, which I always thought was cool.  She knows her mama.

A month or so ago, though,  Sugar got sores on her belly.  We found out she needed surgery and I gladly paid for it.   After all, my mom and I thought, Sugar still ate well, jumped up on the bed, walked fine, and all her body functions were working.   Neither mom nor I could bring ourselves NOT to do the surgery.  After the operation, Sugar seemed to be doing well and healing okay, but these past few days she grew weaker.  She started limping and then she just sat in the litter box.  My mom tried to hand-feed her but she would only eat a tiny bit.  This morning, when she lifted Sugar into her arms, Sugar peed all over her.

So my mother decided Sugar had been through enough.  I called Andy to tell him, and he said he understood and was sorry.  My mother picked me up at work and I held my 4-pound cat in a blanket on my lap as we drove in silence to the vet.  I closed my eyes and ran my fingertips through her fur, along her sharp spine, my tears falling freely on her tiny head, like a baptism in reverse.  An anointing of the sick.

Sugar purred softly in my arms as we took her to that same compassionate doctor who first examined her 13 years ago.

I pet her as she was laid on a soft blanket and given first an injection to make her groggy.  The doc left the room for a minute as we said goodbye.   I love you, Sugarpuss, I whispered in her ear, kissing her one last time.  I silently asked Gina to come get her, please, and God strike me down if I’m lying just then a Paul Simon song from our favorite album came on the very-low-volume piped-in music in the room, and I knew it was her way of telling me she’d be there to show my cat around heaven.

When the doc came back, she gently asked if we wanted to stay in the room.  I knew my mom didn’t want to, but I did, so mom bravely stood by me; softly we spoke in whispers to our old, sweet, tiny runt of a calico cat.   “It’s okay, baby,” I  told her.  “It’s okay to go.”   The doc took her time to carefully search and find a good vein.  She inserted a needle and slowly injected Sugar with whatever drug will euthanize a cat.

“God’s finger touched her, and she slept.”  ~ Alfred, Lord Tennyson

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“The truly creative mind in any field is no more than this: A human creature born abnormally, inhumanely sensitive. To them… a touch is a blow, a sound is a noise, a misfortune is a tragedy, a joy is an ecstasy, a friend is a lover, a lover is a god, and failure is death.  Add to this cruelly delicate organism the overpowering necessity to create, create, create — so that without the creating of music or poetry or books or buildings or something of meaning, their very breath is cut off.

They must create, must pour out creation. By some strange, unknown, inward urgency they are not really alive unless they are creating.”

~   Pearl S. Buck (1892 – 1973)

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