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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.

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.”

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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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gasping

“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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“Faithfulness to the past can be a kind of death above ground.  Writing of the past is a resurrection; the past then lives in your words and you are free.”  ~ Jessamyn West 

I know exactly what Jessamyn means, though I’d never have been able to state it so succinctly.  And so resurrection occurs for me this Easter through writing.  When you write about something, your perspective gets to control it; when it has already happened you can shift it…place it under the microscope of your perception.  You can then craft it, shaping it, painting and whittling and building.  When something inside me has died, this is its resurrection.

Several things died inside me yesterday.  I am hoping the writing of them will resurrect.

My mother wanted to drive us down to see Boo for “our Easter” with him.  On the trip I would look over at her, worry over her; she drives the car a little jerkily these days, and she has lost so much weight.  She has not smoked in almost a month, and I told her I was proud of her.  I am.  But for her to quit smoking, she must have been very close to calling-911 sick, that unable to breathe.  She doesn’t let on to things and she does not go to the doctor.  Ever.

And so my mother and Andy and I repeat this process every Saturday, spinning the wheel of Jonah-Fortune, each time getting a different result.  This time my mother and I passed a truck on the way down; on its back was painted a Bible passage about hope and trust in the Lord.  This my mother took to be a good sign.  I took it too.  If  God wants to throw us a bone, I’m a grateful pup.

Anyway, Jonah’s school had an Easter Egg hunt that morning, and Jonah loved it, they told us.  I wish there were pictures, a video.  I wish I could be Big Brother watching.  No, not really.

I just want to watch my son smile and laugh.  He laughed on the way to the apartment.  We held hands and sang Guster songs and Zip-a-Dee-Doo-Dah.  We played Where is Thumbkin…

I took 3 pictures of us.   I’m a homely thing, but I’ll post one anyway.  Jonah must have gotten the cute from his dad’s side. 

When we first got to the apartment everything started as usual — Jonah almost immediately stripping down for a bath, my mother spreading out food on the table, Andy supervising the filling of the tub, me preparing to help where I’m needed.

Downhill it all went, quick as a bunny, you might say, and there isn’t going to be much of a blow-by-blow today because I don’t have it in me.  Jonah ramped up and ramped up, splashing water, then throwing his plate of food, then turning like lightning and going for my face.  I caught his wrists, he scratching the insides of my wrists.  On time-out in the bedroom Jonah decided to use poop as a weapon and started to push.

Andy quickly picked him up and put him on the toilet, where Jonah finished pooping – but not before he got some on the white knitted throw.  Andy did restrictive holds and scolded Jonah while my mom put the bedspread in the sink, scrubbing it, and I stood in silence.  There was fighting and yelling among us all.  It was chaotic and felt dangerous and wrong.  It made me want to scream that scream inside me, the scream that keeps getting bigger, tight and thick as a brick.    All this was supposed to be our little Easter celebration.  I didn’t eat more than a few bites.  I don’t know how long it will take for this to feel like another new normal.

I think it’s time we make an appointment with Jonah’s caseworker and we can all go and talk about Jonah, ask for guidance, find out what’s working for them and what isn’t, find out something.  Find out anything.

Eventually we did get a small amount of playground time with Jonah, and we walked over to the vending machines and bought him pink lemonade. “Pool? pool?” he even asked as we passed the gated, empty, cavernous rectangle .

Yes, bunny, pool is coming…just a few more months…

Then back to the playground, where he actually scampered up the slide and on other play equipment (as opposed to swinging to the exclusion of all else).  Abruptly he asked for “Birch House?” –which is where he lives, right next to the playground.  His bedroom window overlooks it, the play area…his favorite swing… the pool beyond it.  We followed him in to say goodbye.  I know now how to put my brain and heart on NEUTRAL or I couldn’t do this thing again and again and again.

A small scratch Jonah had made just under my right eye stung every time I cried yesterday.  My wrists look mysteriously pocked, almost pecked – The Birds style.

But mostly it’s exhausting emotionally for us all.  Sometimes I don’t think Andy is doing well, I know my mother isn’t doing well, and as for me, writing is my resurrection.    Still, there is doubt in everything I do — in every motive.  Am I too self-conscious or merely self-aware?  Am I hyper-sensitive or is everyone else desensitized?

And how the heck does the Easter Bunny get from house to house?  I do not believe this has ever been explained to me.

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There is something almost routine, now, about kissing my son goodbye after a visit or a doctor appointment.  But sometimes I step back unwittingly from that routine and kissing my son goodbye comes with a horror that feels like the day we said goodbye for that first awful time at the school. 

My mind is pretty good at erasing or dumping some memories and then it refuses to get rid of others;  I will never be able to escape the memory of kissing my son goodbye that day.  I don’t think I’ve ever held my breath for longer than when they led him away, out the door, down the hall.  Gone. 

When Andy and Jonah left today it felt like that.  I had a difficult time listening to what the doctor was saying and absorbing it all.  I gave her the direct number of Jonah’s nurse at school and I wrote down a lot of information before I left, though.  The conversation helped to snap me out of longing to run after Jonah and snatch him up into my arms.

For a while I have needed to go out in an empty field somewhere and scream my head off.  Really scream. 

It sits inside me, that scream.

World Autism Day.  Light it up Blue.  Good.  Make them aware.  Research, figure this out.  Please and thank you.

Today the doctor was a pediatric rheumatologist who is only in Albany two times a week.

Remember when we had to drive all the way to Boston Children’s Hospital?

There was a rumor that she had a practice in Red Hook, close to Boo, but no one could confirm this.   So E took matters into her own hands and found out this doctor lives in Rhinebeck (which also is near where Jonah lives).  E tracked her down and called her home phone to ask her does she have a practice in Red Hook or not?  

(E is badass.  I told you so.  She gets shit done).  But the doc’s got no practice in Red Hook.  

So today Jonah, in honor of World Autism Day, got his official diagnosis of JRA (Juvenile Rheumatoid Arthritis).   Now I am becoming acquainted with yet another disorder/disease.  There are several kinds of JRA, and Jonah’s is called Pauciarticular Onset JRA – the most common form of JRA.  Of the three JRA subtypes, (reads the brochure) children with pauciarticular have the highest risk for getting chronic eye inflammation called uveitis.   So it is piecing together, albeit slowly.  Next Tuesday we’re going back to Dr. Simmons again to see what now.  I’m researching Methotrexate, the drug they’re thinking of recommending.

As I typed this CNN e-mailed and asked me if I’d like to write some more, so I said yes of course, in honor of World Autism Month.  My favorite pressure, the pressure to write.  I guess because it doesn’t feel like pressure at all, the writing.  But as before I have no given theme or direction — they’re entrusting that to me — so I’ll kind of be winging it.  I am honored just to be asked.

Here are some pics of Jonah from the doctor’s office today – I love taking pics of Boo!

First he was happy.  “What color are the flowers, Boo?  Let’s count them!  1…2…3…4…”

Then he got antsy and needed to walk the hallways.  Black kitty he said, pointing. (I think it was actually an owl.)

Luckily we were at the end of a hallway with a big window.  He visited here quite a few times.  It makes you wish you had one of those passes you get if you take your kid w/autism to Disney.  They go first.  No waiting.  Seems like implementing this at the doctor’s would be a really good idea.

I have to say though, she was very cool, this doc.  We’ve been fortunate to have caring doctors for Boo.  A doctor even took the time to help me find where to go when I’d gotten lost.  Thank you, Dr. D.

“Grab a hold
Take these melodies with your hands
Write a song to sing
Isn’t such a bad, bad world

And I say these times are strange
I can feel it in the night
I’m standing in the dark
Holding up for the light

And here I’ll remain
‘Til the great sun shines
Standing in the dark
Waiting up for the light…”

~ Guster, Bad Bad World

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“Well on the way, head in a cloud,
the (boy) of a thousand voices talking perfectly loud
But nobody ever hears him or the sound he appears to make,
and he never seems to notice…but the fool on the hill sees the sun going down,
and the eyes in his head see the world spinning ’round.”

~Fool on the Hill;  The Beatles.  (I changed man to boy, for Boo).

Fool on the Hill is Andy’s mother’s favorite Beatles song.   I remember little details and forget big ones.

It was not a good weekend for Boo, or so I hear.  I didn’t get to see him.  This weekend was our annual Spring Convention at NYPA, where we represent nearly 800 community newspapers and gather them all for a weekend full of training, fun, and elegance, this past Friday and Saturday at the Gideon Putnam in Saratoga.  As it involves months of preparation and hard word, it is particularly difficult on some people in my office, and they pull it off, year after year, with smiling, professional aplomb.  I don’t have that kind of whatever-it-takes to do it.  I tried, years ago, and couldn’t pull it off.   “The weak get crushed like insects,” young David’s father told him in the fabulous move Shine.

So mostly I attended a lot of classes, all taught by awesome speakers giving great advice.  Our keynote speaker at Friday’s lunch was Alex Jones, and I thought he was awesome.  I even bought one of his books when I got home:  “Losing the News: The Future of the News that Feeds Democracy (Institutions of American Democracy).”

Friday night there was a Gala, and I wore a slinky blue dress, flowing and sparkling.  I loved it when I saw it and bought it without concern for whether or not I could pull it off.  “Keep your shoulders back,” co-worker L kindly reminded me, for I tend to hunch in on myself, as if in an attempt to disappear completely.  If you’re going to sport a dress like the one I wore, you have to have something I just don’t have.  I felt shockingly thin and overly self-conscious.  When will I learn to find a fashionista friend to shop with me and be my Simon Cowell?  I don’t drink, so I didn’t gain “liquid courage.”  (In fact, one of the reasons I don’t drink is that at one gala I did get tipsy, and overbearingly begged for one publisher’s reminiscence of the Grateful Dead for way too long.  I’m still embarrassed every time I see him; I think he’s really cool.  When I am drunk I am a train wreck.  Best to avoid that.

Dr. Phil (who is not my personal guru or anything, believe me) says “You wouldn’t be so worried about what people thought of you if you knew how little they did.”  In this case I know he’s right. In spite of my stupid self-absorption I  had a great time and met lots of incredibly awesome people.  ‘Twas a success, methinks.  A big one.  The whole thing was made all the richer by the presence of a new bunch of people representing ethnic papers.  They were gracious and cool to meet and talk to, learn from.

At the end of the conference I gave one publisher’s daughter, little J, my ID card lanyard.  She wore it proudly. 

But

I am sorry for my mom and for Andy most of all.  I guess on Saturday Andy drove Jonah up to visit my mom, and everything was okay for a while, until car ride.   They went to see train and caught a long one, but Jonah quickly became agitated afterward.  My mom said he took off his pants, grabbed handfuls of his poop and smeared it on the back window.

God knows what else he did that neither she nor Andy told me about.  The cleanup, the tantrums, the shit quite literally all over the place, the ride home.  Dropping Jonah off.   Thinking about it and trying not to try not to think about it.

I was spared from it by convention, thank God.  Were I there it would have almost certainly been worse for everyone and maybe me the most.  The weak get crushed like insects.  Thank you to my mother and to Andy.

Tomorrow Andy and I have to take Jonah to a semi-emergency appointment to see the pediatric rheumatologist.  (The earliest appointment she had was in June and she squeezed us in now because we have to be quick about all this).  So far we’ve gotten lucky with Jonah’s doctors but we’re due for a shitty one.  Either way, it looks like there is eye surgery of some kind in Jonah’s future.  His right eye, blessedly, is fine. The doc appointments just  kind of just go on and on, but I guess that’s just being a parent.  We will save the sight in his left eye; I’m going to do my damndest to see that we do.

Next Tuesday is another appointment with Dr. Simmonds again, the glaucoma doc, and E and J will be able to bring Jonah up to that one.  I love those guys.  I know I keep saying it, but I can’t help feeling so grateful for them.  By then the glaucoma doc and the juvenile arthritis doc will have conferred and will have a good recommendation for what we can do.

Your mama misses you, Boo, and loves you very, very much.  But I’m not going to lie to the people this weekend – I’m glad I wasn’t there when you flipped out this Saturday.  I’m glad – even if that exposes me as a selfish little girl.

I am so tired today, I don’t have it in me to do much of anything at all.

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