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Archive for January, 2013

I don’t know if this is a surprising fact or not, but I’ve never read my blog all the way through.  But sometimes I read old entries, especially when they show up on my “top posts” list – partly, I guess, because I wonder how or why certain entries ended up there.  And partly to see how often I say the same shit, or whether or not I’ve ever given a blog post the same title twice.  And partly to document events & things I will otherwise flush down the memory toilet.  And for a bunch of other reasons.

One thing I realized is I start stories and then don’t finish them.  Like the whole Humira saga, when I had to pay more than two thousand dollars out of pocket for Jonah’s medicine and then fought through miles of red tape for weeks to get reimbursed – and even then only with the help of a few incredibly kind, kick-ass professionals.  I never re-visited that story.  Maybe I just forget to re-visit things…0r even mention them in the first place.  So today for you I have a list of stuff I’m pretty sure I never talked much about.  Some are opinions.  Some are confessions.  Some are boring.  All are true.

1.  I got reimbursed in full for Jonah’s $2k Humira refill.

2.  In ten days, for ten days, I am going on vacation to Waikoloa, Hawaii.   (Yes, my house is being watched).

3. I have been living from Guster show to Guster show for a few years now; this truth became evident when I realized I immediately purchase tickets the moment they are available, each and every time I get a tour announcement e-mail from them.  Just bought tickets for yet another show; they’re playing near Boston with Dispatch.  Someday Jonah will come with us.  I hope so anyway.  (They’ll have a summer tour on top of this and I’ll buy tickets to at least one show on that tour, too, the moment they are made available to me).

Saturday June 8th
Mansfield, MA @ Comcast Center w/ Dispatch
$42 – All Ages – 6PM
Ticket Presale (January 28th @ 12PM, use code “CIRCLES”) | Info & Facebook RSVP

4.  More and more often I find myself wanting to find ways for Jonah to swim.  He is so happy in the water.  There is a hotel near my house that offers an indoor swim club, and there is always the Center for the Disability Services, though their pool is literally 90-something degrees and necessarily full of chlorine.  Maybe Andy can help me find a place down near where they live where we could bring him.

5.  I secretly (well, obviously not so secretly) love that Jonah sucks his thumb.  He does not flap or rock, but he does walk in circles, and he loves to suck his thumb.  I even love the way he sucks his thumb (watch the end of yesterday’s post‘s 19 second video).  Maybe it’s because I was a thumb-sucker too.

6.  Sometimes I feel happy that I have more freedom now that Jonah doesn’t live with me.

7.  Sometimes I feel guilty for feeling happy for feeling free.

So it goes.

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freude schöner götterfunken = joy, beautiful spark of the gods

Oh, the joy of an incredible day with my Boo.  And I learned a thing or two.  I’ll commence in telling you (says Dr. Seuss).

My mother can be exceptionally discerning.  She started to notice that Jonah, when we first pick him up, greets her by declaring what there is for lunch.  I’m not saying Jonah is psychic; it’s not like there are 100 items on the menu.  But it is interesting nonetheless because she makes tuna sandwiches one week and turkey the next, in a routine from which she does not vary.

Still, when she declared to me yesterday that Jonah tells her the right kind of sandwich on the right week, I doubted her.  “You watch,” she said.  “Today he’ll say tuna.”   And sure enough, when we picked him up yesterday, the first words out of his mouth were “tune-fish samwich?”

I realize how this may not seem like an accomplishment worth mentioning but I thought it was incredibly cool.  He remembers things very well.  He knows where he is in the world at all times, even when you think he’s not paying any attention. He’s no Rainman, but he does have a few strange, fascinating “splinter skills.”  (There are reports of individuals with an incongruous repertoire of abilities: apparently general cognitive impairment coupled with outstanding performance in specific areas, such as music, drawing, calculation, and memory).

Two or so years ago he started to utter the alphabet backwards, fast.   Who can do that?

And I’m not sure his swimming abilities are a splinter skill too but nature (God?) made him completely at home in (and under) the water, happily Pisces, a true fish who is unfortunately out of water most of the time.  If I had the money I’d buy us a private tropical place and hire a team of caregivers and teachers, and we’d swim every single day, with dolphins and manta ray, and he could run up and down the sands and jetties as fast as his long, lithe legs could carry him.  I have to get that child to the beach again.  I need to find a way.

Now I’m rambling, unfocused.

Yesterday.  On the ride from Anderson to Andy’s apartment, Jonah wanted me to kiss his hand.  He proffered said royal hand to me from the backseat.  Kiss hand?

The Godfather would like his hand kissed.

The Godfather would like his hand kissed.

Yes, Boo, of course kiss hand.  I kissed each finger and then pretended to suck his thumb, eliciting much joy from Boo.

I love the indescribable color of his beautiful, shaggy head of hair in the sunshine...

I love the indescribable color of his beautiful, shaggy head of hair in the sunshine…

He still has the chafing around his mouth.  I will call the nurse tomorrow.  We think it’s from the Methotrexate and the Humira, or both.  Side effects and more medicine to treat the side effects.  Sometimes I want to take him off every single med and see what happens.  Titrating him, slowly.  I don’t know if I am correct in this feeling.  It isn’t mother-instinct.  Just a question.
Look at all that hair on the top of his head.  The back is relatively short and the overall result is a ragamuffin look I really don’t mind.  It’s my mom who would like to dictate the length of his hair, not Andy and me. I think they should color it a deep blue.  He’d LOVE it.   Just no mullet, please.

I don’t know why I didn’t color my own hair a deep blue when I was younger.  I guess because I’ve always had a job, and since I graduated college in the early 90s they’ve frowned upon blue hair unless you work at a head shop.

If I ever don’t have a job I’m going to color my hair deep blue for a while.

I think he looks angelic here, with the sun all on & over him

I think he looks angelic here, with sun all over him

I really don’t care if he has splinter skills or not, of course.  I just think he is a fascinating manifestation of a boy, and on top of that I get to be his mother, albeit imperfectly and frightened as hell at every turn.  And yesterday:  more kiss?  more kiss?  At the apartment and on car ride to the transfer station.  More kiss?  More kiss?   Beautiful words.  Treasured words.  Joy.

Joy, beautiful spark of the Gods.  freude schöner götterfunken – from the Ode to Joy by Ludwig von Beethoven (Gina’s favorite composer).  They played the Ode to Joy as Andy and I exited the church with heartsmiles on our wedding day, August 19, 2000. — I’d sung the Ode to Joy in college with the Catskill Symphony Orchestra.  On that day – my wedding day – I felt joy so strong I almost couldn’t take it.  The day was a perfect sunny 70 degrees, as if the weather were celebrating with us.  There is still celebration in it, no matter how the subsequent years have unfolded.  You can’t take that kind of joy away, not ever.

I live for it.  Like an open window from which you can glimpse heaven itself.  It’s in the uncontrollable laughter, the uninhibited play, the favorite books, the embrace of a partner, the eyes of your child, the song that lifts you, the friend who shares, the pets who love unconditionally, the innocence that brings tears to your eyes, the purity of grace which cannot be denied.

My favorite love poem.

XVII (I do not love you…)
by Pablo Neruda

I do not love you as if you were salt-rose, or topaz,
or the arrow of carnations the fire shoots off.
I love you as certain dark things are to be loved,
in secret, between the shadow and the soul.

I love you as the plant that never blooms
but carries in itself the light of hidden flowers;
thanks to your love a certain solid fragrance,
risen from the earth, lives darkly in my body.

I love you without knowing how, or when, or from where.
I love you straightforwardly, without complexities or pride;
so I love you because I know no other way

than this: where I does not exist, nor you,
so close that your hand on my chest is my hand,
so close that your eyes close as I fall asleep.

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“The walls are painted in red ocher
and are marked by strange insignia,
some looking like a bulls-eye,
others of birds and boats.
Further down the corridor,
he can see some people; all kneeling.

The carpet crawlers heed their callers:
We’ve got to get in to get out
We’ve got to get in to get out
We’ve got to get in to get out.”

~ The Carpet Crawlers, Genesis

I dreamt of strange, vague, nightmarish, nondescript apocalypses, of dying people everywhere, irradiated, burning from the inside out.  Of Andy and I trying to get to Jonah.  It’s hard to breathe, see, or hear.  All food is gone, and the sun is obscured by black falling snow.  The car is on empty and finally stops, and a landslide of mud and logs is coming at us, certain death, and I’m trying to handle that but then suddenly we see Jonah in a huge pool.  A police woman tells me sternly to remove him from the pool.  “There are carpet crawlers on his raft,” she explains, and is gone.  Andy and I climb in the pool with Jonah, and Jonah reaches out to grasp one each of our hands, sliding off his raft.  He pulls us down to the bottom and we can breathe the water and see just fine and are no longer hungry — and the carpet crawlers are, after all, only on the surface.   Then, slowly, the water drains, and we drown gasping in the air.

This following the Guster show Friday night at the Capital Theater in Portchester, NY.  Maybe the significance is we had to sit next to four drunken assclowns who drank and drank and drank, laughing and talking through all the songs because dammit we were in the wayback (second to last row balcony) and they could get away with their obnoxious douchebaggery.  The girl with the Coach bag asked me to watch her coat in between drinks.  I wanted to say “You think there are coat thieves back here in the balcony of a Guster show?”  Her steroid-large leather jacket-clad Italian boyfriend, no matter how deep in conversation with his gf or his text during the songs, paused after every song to hoot and holler, laughing derisively.  Why are you HERE?  I wanted to ask them.   Sigh.  Maybe I’m just getting old.

But then the music took over and I forgot about wanting to punch the moron.

It was an awesome show.  I even got a few decent pictures from my far-distant visage:

Ryan and Luke

Ryan and Luke

April, Charlene, Adam, Ryan, Luke

April, Charlene, Adam, Ryan, Luke

Brian, under spotted light effects

Brian, under spotted light effects

Dwight Yoakam?  Isn't that the country singer who played Dole in Slingblade?

Dwight Yoakam?
Isn’t that the country singer who played Dole in Slingblade?

I dislike Westchester.  Lived there for a year.  But I had to get in to get out.  That night I had the carpet crawlers nightmare.

Next morning M dropped me off at Andy’s, where we met my mom and drove to pick up Boo.   Everything seemed in slow motion – even Jonah, who was more subdued than usual.  Even his lone aggression, aimed at Andy, fell short of notable.  I brought Guardian Gus the ScareMeNot for Jonah to hold, and all was right with the world.

O

Later Jonah took a bath and put his head right underwater.

Later Jonah took a bath and put his head right underwater.

It reminded me of that creepy dream, but we had a good day and Boo was, for the most part, a very good boy.  I hugged and kissed him soundly several times without suffering any consequences.

When I got home M and I took a long nap and then stayed up til almost 2am.  Today feels like it should be Monday (because we took Friday off) but then neither of us has Martin Luther King Jr. Day off.  It all balances out, but today I’m cooking homemade something and relaxing to episode after episode of All in the Family (speaking of Martin Luther King Jr. Day).

Watch my favorite part of my favorite episode.  I can watch it over and over.

‘Twas a good weekend.  I am appreciative.

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Andy called me this morning to remind me about Jonah’s glaucoma appointment with Dr. S.  

I’d totally forgotten about it so it’s a good thing he did call.  E and J brought Jonah up and I met them all at the office.  We always wait in the hallway because the waiting room is full of mostly 60-90 year olds, and Jonah could take every one of them down if we didn’t stop him.  Bruce Banner turned into the Hulk; Jonah turns into the Tasmanian Devil.

Wikipedia describes Taz as a dim-witted omnivore with a notoriously short temper and little patience. He will eat anything and everything, with an appetite that seems to know no bounds. He is best known for his speech consisting mostly of grunts, growls and rasps, and his ability to spin and bite through just about anything.

Yeah, that sounds a little like Boo.

He was all ramped up today when I first got there, and I’d already stashed my new glasses in the car, so I was literally going in blind.  Luckily he was lovey, and though he answered “no” when I asked if he wanted to sing a song, eventually he capitulated and took turns singing lines of Fa Fa and Keep it Together with me.

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He wanted to touch and knock at the pictures hanging on the wall.  Quiet hands, Jonah, we told him.

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He sat patiently, for the most part.  Then he’d get up, walk in a circle, and sit down again,

J is holding both of Jonah’s hands and rocking back and forth with him, telling Jonah silliness that Jonah loves to repeat…we had to wait for a little while and Jonah was getting impatient.

When the nurse tested his vision, he held up the little black plastic thingee that covers one eye and read what he could.  He’s fine when he can use his right eye, but his left seems much harder for him.  He gets frustrated and tries to cheat.  When redirected he becomes angry, maybe throwing the plastic thingee or hitting the nearest person.  But today he just gave a half-hearted swat into the air and allowed the doc to examine him.

“Okay, buddy, sit on your knees,” says the doctor.  Jonah just sits there.  J and E try to help explain it to Jonah, who then rises until he’s standing on the chair.  Finally J and E have to help Jonah into a kneeling sit so Jonah can scootch himself up and into the eye machine, miraculously cooperative of bright pins of light, strange machinery, a doctor telling you to look this-way-then-that-way, eye drops, and a gadget that touches your eyeball and take its pressure.

Amazing.

M & I took tomorrow off work to travel downstate and see another Guster show; we’re staying overnight, then M will drop me off at Andy’s on the way back.  After our visit with Boo I’ll hitch a ride back to Albany with my mom.

Sounds like a sweet plan.  I think the amount of times I’ve seen the Grateful Dead and the amount of times I’ve seen Guster must be about the same now.  Something like 18 each, maybe.  I wonder if I’m the only person who was first a Deadhead and then a Gusterrhoid.

The thing is, every show is different – every show a re-energizing.  I’m excited to see them.  And Boo.

(He’s kind of re-energizing too).

O

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so far so good

So far so good today.  I am home and took a pic to show you my progess. Much better today, no?

O

Perhaps tomorrow I will actually look presentable for work.

M is better too, and so is Jonah, so far.  Andy picked him up this morning for a visit.  I hope Jonah has fun and is non-aggressive.  I hope they can go for a walk somewhere in the warmish air.  I hope they are happy together and there are no problems gt all.  We’ll see.  I have to learn not to expect too much. 

Radical acceptance is really quite radical.

I’ll keep you posted.

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ataque del corazón y el chico

I felt like doing the title in my poor Spanish.  It’s supposed to say “attack of the heart and the boy.”  I like it better in Spanish, even if the Spanish is wrong.

I promised pictures.  

Here are birds sitting on the iron fence outside Albany Medical Center at 8am this morning, undisturbed by my close proximity. 

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I like to count birds on wires and fences, but I was too tired and too freaked to count them this time. 

M was woken up at 6:45am this morning with bad chest pains.  I urged him to go to the hospital and he only resisted briefly (he must, I suppose, as he is a man) before capitulating and letting me drive him to the ER.  He could walk but was a little short of breath and still in pain, like a hard push on his sternum, he said.  I sat with him as they gave him an EEG, which looked normal, and a blood test.  He wanted me to go see Jonah anyway and since he wasn’t in crisis, I left my car there for him and my mom picked me up to drive to Rhinebeck.  I had only had time to roll out of bed and pull on clothes, so I looked like hell and was tired and worried.  (They are discharging M as I type so he will be home soon).

So my mom drove her car down, and she waited in the car when Andy & I walked to Jonah’s cottage house.  He was happy and smiling when we arrived.  I waved to him through the window and he waved back.  He wanted my hand, my hugs.  It felt good.  We gathered his things.  Andy and I spoke briefly to a few of his careworkers and then walked out the door, Jonah grinning wide and holding my hand.  “Hug?” he asked sweetly.  I leaned down and hugged him, and the next second my face was on fire with pain. 

He’d let go of the hug and taken one hand, starfish-wide, and gone lightning-fast for my face..  He wasn’t letting go, either, and he’d managed to dig in tight.  When Andy got him off me, one nail raked a good scratch just below my eye.  I have no idea why I’m sharing this mugshot picture – I mean, I don’t know when I’ve ever looked this bad.  It actually looks like one of those “after” pictures when they show what crystal meth does to a human.  What a long, strange, stressful, hurt-y, crappy day I’d had by noon.

O

                 Mama’s Mugshot

It makes no sense.  Why do I need it to make sense?  I could understand if he was told to do something he didn’t want to do, or to go somewhere he didn’t want to go, but he wasn’t.  He was happy.  Lovey.  It just doesn’t make any sense.  Maybe when he saw me he got mad because he was simultaneously happy to see me and also thinking why the hell do you come get me once a week and then leave me here!?  I hope to God it’s not that.  Would he forgive us if he could understand what we did, and why? 

Eventually Jonah calmed down.  I still think he’s a little under the weather.  He wanted bath and had tune-fish sandwich and car ride to the transfer station and he got all of those things.  He was surprisingly uninterested in train or park or anything else especially fun.

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M is home now and his kids were supposed to come visit this weekend but now that’s out of the question.  They wanted him to stay overnight at the hospital and he wouldn’t do that.  They ran a bunch of tests and say he’s okay. 

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I’m tired and am going to take a nap.

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“Before you speak, ask yourself – Is it necessary?  Is it true?  Is it kind?  Will it hurt anyone?  Will it improve on the silence?”
~ Sri Sathya Sai Baba

How hurtful we can be without meaning to be.  You’d think I’d be used to being hurt, both physically and emotionally, but I’m just not.  And ’tis a horrifying thought to know I also have spoken quickly, without thinking, without asking myself these questions.  We all do it, I imagine.  This quote is so wise, whoever Sri Sathya Sai Baba is.  I learn lots by researching the person who uttered a quote I love. 

I saw Jonah on Wednesday at Albany Medical Center for his pediatric rheumatologist appointment.  E and J are back as the team who drives Jonah to and fro, but they do so much more than that, as I’ve mentioned.  I love these people and look forward to seeing them almost as much as I look forward to seeing Boo.  He did well at the appointment, mostly, but part of that was due to the caring doc’s speed and efficiency.  No waiting.  None.  We go straight to a room and as soon as she sees him, Dr. B is on her game and handling everything.  It’s refreshing.  I don’t know how she does it, but I’m more grateful for her than she will ever know.

I should have taken pictures but I keep forgetting my camera, or forgetting to charge my camera, so I’ll end the post with some more random pictures.  I like putting pictures in my blog post.  Tomorrow I’ll remember the camera when I go visit Boo, I promise.  I wish I had it at his doc appointment.  He was parroting in classic echolalia form.  “Jonah, sit on the table.”  Over and over.  He’d had enough at the exact moment she finished gently pulling and prodding his joints.

There are so many things I wonder about my boy.  I know the other kids like to cuddle with the caregivers on the couches and watch TV or play Wii, but Jonah doesn’t like it.  I know that much.  He wants to stay in his room a lot.  They coax him out when they can, it seems.   I hate thinking about him alone in his room.  If that’s what makes him happy, should I be more okay with it? 

I wish I knew more about what he likes to play with, and who he wants to be with, and things he says/does/sings.  They don’t tell you a whole lot beyond basic information but I want anecdotal stories.  I want to hear about it when he does good things, or funny things…not just whether or not he had “behaviors” that day, or how many, or what he had for dinner and whether or not he threw his plate.  I want to know more about my son. 

I know he is sick right now and I want to hold him close and let him lie on me and suck his thumb while we watch Barney or the Wiggles.  Of course I just described a fantasy.  Even if he were here in my home that scenario is highly unlikely, unless he were really, really sick.  He’d hit at me, pull my hair, scratch my face.  Is he angry at the world?  Is he angry at us all because we just don’t get it, whatever it is?

Some weeks it’s easier to have gratitude than others.  Sometimes I don’t sit down to add a blog post until I’m motivated by a hurt, worry, depression, shame, anger, or some other emotion that drives me to write.   I guess it means every blog post is skewed by its catalyst emotion.  I can’t do much about that, but today’s emotion, even though it’s Friday, is soul-tired.

I’m praying for a lot of people.  A lot.  They all have serious needs, problems, grief.  I don’t know what good the prayers do but I like to send them up anyway.  I’m a little unconventional with that, but I do pray from my heart and my heart always answers back you are not alone in your hurtYou are not alone.  And that’s the gift you get back when you pray for others; it’s all mirrored back at you, offering perspective and empathy and, if you dig deep enough, peace.

Blah blah blah.  Some pictures:

Me and an unidentified large bear, outside the Bass Pro Shop in Springfield, Missouri.

Me and an unidentified large bear, outside the Bass Pro Shop in Springfield, Missouri.

his mama's bony body and his daddy's tan

Mama’s lean body, daddy’s tan skin

old days, exploring in the forest near home

old days, exploring in the forest near home

the waterboy

Waterboy

daddy holds Jonah's hand and grandma walks beside them - away from his residence and across the campus to the car.

daddy holds Jonah’s hand and grandma walks beside them – away from his residence and across the campus to the car.

Mama will see you tomorrow, Boo.  Sleep tight.

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