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Posts Tagged ‘Guster’

And so it came to pass that for 6 nights and 7 days following his eye operation, Jonah and his mother and father moved into Grandma’s house.

The story is too long to tell and, by now, amalgamated into one long, blurry, mess of exhaustion, irritation, frustration, worry, and a million rational & irrational emotions spanning the gamut of the human condition.   But I can provide some idea of the experience, sans hyperbole.

Each day Jonah attempted to remove his eye shield at least five times and usually 10 or more – and since it was vitally important for him NOT to touch his eye, each attempt required sudden and swift action, whether during day or night, in the car or the bathroom, while he was eating or running about or watching his favorite parts of  Willy Wonka and the Chocolate Factory.

And each swift action provoked Jonah, usually sending him into a rage whereby injury was inevitable and often severe.  These injuries occurred most often to Andy, since he was the only one with the strength to hold Jonah down while I cleaned the eye shield and re-taped it all across his face, attempting to close off any possible entry points for Boo to slide his finger beneath the tape and itch his eye.  Not to mention there were two different eye drops we had to give him, one twice a day and one four times a day.  Andy had borne a hole in the middle of the shield so that we could sometimes manage to insert the drops without having to undo all the tape and re-apply it again.

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We quickly discerned that any of us was unsafe sitting in the backseat of the car with Jonah, after he bit my mother’s arm 3 or 4 times, drawing blood, and, on a separate occasion, attempted (partially successfully) to rip out two handfuls of my hair while somehow simultaneously shoving his foot in my face.  Why not give up the car rides altogether, you ask?  Because the car rides were among the only time-eaters, one of the only ways to give Jonah any semblance of peace.  A thousand times a day, at least, he begged for car ride?  car ride? car ride?  wanna go see train?  train?  car ride?  wanna see train? car ride?  wanna go car ride?  wanna see train?  car ride?

I promised no hyperbole: a thousand times a day.  By Friday I decided to count, and got up to 87 in the first 15 minutes of the day (our days began whenever Jonah awoke, usually around 6:15am) before giving up.  It was maddening, the requests.  At times we temporarily lost the ability to feel any sympathy at all for Jonah in the midst of his incredible ability to spew forth repetitive phrases ad infinitum.  Oompa oompa?  he’d ask if he wanted Willie Wonka, which was our favorite request, for it meant we could sit or lie down with him while he watched.  He has no interest in the movie whatsoever until Augustus Gloop falls into the river of chocolate, but he adores the Oompa Loompas and most especially the end of the movie, where Willie Wonka yells at Grandpa Joe:  “You STOLE fizzy lifting drinks!  You BUMPED into the ceiling, which now has to be WASHED and STERILIZED, so you get NOTHING!  You LOSE!”

Unfortunately it was also his least requested thing.  In a vague order of repetitiveness, I’d say his requests were most often:  car ride?  wanna go see train?  breakfast san-wich?  take band aid off?  black donut?  lemm-a-made?  grandma?  all done?  (when he was being held for aggressing), and a variety of other things, usually uttered in rapid-fire desperation, for what he really wanted, I am sure, is to have that damned eye shield gone and his routine re-established.

On each car ride Andy played FLY 92.3 on the radio, which Jonah loves. Music?  he asked if it was not on, or loud enough.  This meant we were treated to the same 15 songs or so played over and over and over- YAY!  More mindless repetition.  I got a particular kick out of Taylor Swift’s song about the nostalgia of feeling 22.  I mean, isn’t that how old she is now?  Once I slipped Guster’s Easy Wonderful in the CD player – but within 4 songs Jonah was asking for radio.  I’ve lost the ability to guide my child’s taste in music – but then, what parent doesn’t?

We were at the train tracks in Voorheesville so often that we met all manner of railfanners.

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These individuals come from all walks of life and sometimes far away locales to watch (and often tape) the trains passing by.  They explained to us the pattern of the four lights, two on each side of the tracks, and what they meant.  Four reds was bad business and usually meant no train was coming.  We learned quickly not to say “four red lights” or anything even close to it within earshot of Jonah.  He often began begging for green light the moment we got in the car for a ride to the train.

that way?  he would ask, pointing in the direction he thought the train would be coming from

that way? he would ask, pointing in the direction he thought the train would be coming from

One day I snapped a picture of him actually smiling a little after we were lucky enough to see two trains!

note the ridiculous amount of tape all over his face in our attempt to keep him from touching his eye

Note the ridiculous amount of tape all over his face in our attempt to keep him from touching his eye

God forbid we had to detour from the exact route Jonah was used to while driving to the train.  One time the local convenience store (Handy Andy’s) was in the process of burning down, smoke reaching with fat, grey, angry fingers at the sky.  We had to go the wrong way, and there was hell to pay.  That way!  That way!  Jonah screamed, oblivious to the burning building and emergency vehicles everywhere.  To him it mattered not that flames were literally blocking our path; the only thing of consequence was that his route had been inexplicably disturbed.

One day he “eloped” (ran away), bursting out my mother’s front door, sprinting halfway down the street before Andy could even get out the door after him.  Andy had to drive his car halfway down the street and jump out in order to catch Boo, track-star of the year.  During the initial drive home from the surgery we had to pull over to replace the eye shield for the first time, and some passerby must have called 911 because soon a cop arrived to ask what the situation was.  Hmmmmmm…where to begin?

Sleep was elusive and usually impossible, especially for the first two nights.  My mother, bless her, slept on a blow up mattress downstairs so that Andy and I could sleep in her bed, each of us on either side of Boo, taking turns watching over him – parent-hawks protecting him from hemorrhaging, from the complete loss of the eye itself.  When there was sleep it came in quick REM lucid dream time, frightening images and nonsensical mazes which were difficult to shake off once awoken.

Lest I get any further caught up in the excruciating minutiae of every incident (and believe me I could write on and on), suffice it to say that by Monday (the day of Jonah’s follow up doctor appointment), there were four individuals on the edge of something frighteningly close to insanity and nearly at one another’s throats.

One final, comedic coincidence occurred just before we left to drive Jonah to the doctor; my right eye was bothering me all morning and when I looked into the mirror, its pupil was fully dilated while my left eye’s pupil was dilated normally.  So after Jonah’s check up, the doc took a quick look at my eye as well and, after an appointment with my own eye doc later in the day, it was determined that I’d gotten some of Jonah’s drops into my eye, causing the uneven dilation.  I’ve had quite enough of eye problems, thank you very much.

I’m bleary eyed (no pun intended) and ended up telling far more of the story than I thought I’d even remember.

The best part of the whole week was snuggling in bed next to my sweet sleeping son, watching him breathe deep, stroking his hair, his warmth and innocence — enjoying the mama moments I no longer can have.  That alone was nearly worth all the exasperation of the week.

When next I write it will be to tell a far different tale – a vastly better tale of redemption, miracles, and dreams come true.  For, as Guster promises us, “there’s a twilight, a night-time and a dawn” — and my own dawn has finally come.

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Never deprive someone of hope; it might be all they have.
~ H. Jackson Brown, Jr.

Early tomorrow morning Andy is driving Jonah up to Albany for an operation to remove the Retisert implant from his left eye.  (Turns out I’ve been spelling it wrong for a while).  I know that the chance of Jonah’s eyesight improving in that eye is slim, and we hate putting him through yet another eye operation, but still I have hope that it will help him to have the implant gone.  It is at best a foreign object doing nothing, and at worst something which causes his eye pressure to rise – and maybe even causes him pain.

Tomorrow and the next day will be a time of special vigilance over Jonah, to care for him when he (almost always) gets sick after awakening from the anesthesia, to ensure he doesn’t get any of his little fingers under the eye shield, and to keep him pain-free, occupied, and as calm as possible.  Andy and I and Jonah will all stay overnight at my mom’s, so we can take turns watching him and caring for him.  At the very least Jonah’s constant cries for “Grandma’s house?” shall be fulfilled.

On Saturday when my mom and I drove down to visit Boo, our spirits were somewhat lifted because he’d had a good week, for the most part. Again the pendulum swings without reason; after his eye heals, I would like to contact Jonah’s psych doc and titrate him off his meds, then start over with one med at a time.

Saturday Andy was very tired (he struggles with insomnia).  I tried to step up and help out more than usual so he could lie down.  I gave Boo his bath and offered him small sips of his beloved black soda.  I played straws with him on the floor, which basically means I make little house-like structures with colored straws and he gleefully knocks them over…or, in another variation, he dumps them all over the place and we sing “clean up, clean up” while he picks up two or three straws and I pick up the other 22.  Sometimes he’ll help me sort them by color, but he wasn’t having any of that this day.

We went outside to blow bubbles –  I hold it?  — Jonah asked after I blew a stream of bubbles into the air.   I put bubble solution on the mini-wand and handed it to him, and he blew way too hard and spazzed the solution all over himself.  He didn’t seem to mind; he simply handed the wand back to me and watched some more of the rainbow orbs fly past him into the air.

Then I got on Andy’s computer and showed Jonah the video of him swimming in a Cape Cod hotel pool when he was seven.  Interestingly enough, Jonah is at his heaviest in the video (and has moon-face from steroids given to him to combat the the very beginnings of all these problems with his left eye).  At any rate, it had been a while since I showed him this video and he shrieked with delight, watching himself swim.  I asked him if he wanted to watch the video of him singing Guster, but he kept asking for the swimming video, so we watched it 8 or 9 times, each time Jonah screaming in excitement.

Finally, I entered “train” into the search box and, thanks to all the rail fanners, there was a plethora of videos of trains approaching and chugging along.  We found one of a nice, long train….the approach, the gate lowering, the lights flashing, the rhythmic noise growing louder and louder, and the cars passing by, providing Jonah with a visual ecstasy I don’t quite understand but can certainly appreciate.  Instead of shrieking, this time he stood mesmerized, his eyes following each car, never growing bored even though this particular train was at least 100 cars long.  A few of these videos kept Boo occupied for quite some time – all in all, enough for Andy to have a quasi-nap (if all the screaming and shrieking didn’t wake him).

And so Saturday served, also, as an early Mother’s Day for me and my boy.  I was a little disappointed that his teacher at school didn’t have the kids make something for their moms, but at least I got to spend some fun time with him.  And tomorrow and Wednesday I’ll be spending all my time with him, gladly, even though it will likely be exhausting and scary.

I hope the operation goes well.  I hope Jonah doesn’t get too sick.  I hope we can keep him pain-free.  I hope his left eye’s vision is somewhat restored, or at least not damaged further.

I hope.

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If your head tells you one thing and your heart another,
before you do anything, you should first decide
whether you have a better head or a better heart.

~ Marilyn vos Savant

Undoubtedly my heart is better than my head, but I’m not sure if that’s saying all that much.  Oftentimes I extinguish the embers attempting to flare into emotions simply because I don’t want to feel those emotions.  And other times the embers are fed by a circumstance or song, and they flicker and come aflame unbidden…causing anything from tight-jawed pain to tremendous joy.

Yesterday Jonah was a happy kid.  My mom waited in the car while Andy and I went to the residence, and Boo was standing excitedly by the front door.  I had brought his “octopus” with me, but a small red-headed boy hugged me and held out his hand for the toy, so I dropped it in his palm, smiling as he ran off happily to play with it.  Jonah didn’t mind, and I can always buy him another.  Jonah’s more concerned with where grandma is, and whether or not there will be delicious things to eat.  We went into his room to gather a windbreaker, and another kid came running in to jump & land on Jonah’s bed.  Another kid was in Jonah’s window because he loves to look out at the playground. Party in Boo’s room.  Jonah tolerated it nicely as we apologized for the handfuls of hair incident from the other day, and asked about his morning (which, they told us, was good).

The caregivers who had endured Jonah’s attack were kind, smiling and telling us Jonah is good far more often and causes smiles more than frowns.  My heart swelled so that tears came into my eyes.  Also he has been doing something new; whereas he used to take his shower and go straight into his room to lie down, now he is coming out into the main living room area to walk circles or sit on the couches with the other kids.  I am glad he seems to be moving toward some sort of socialization, even if the kids can’t really talk to one another (Jonah is one of the most verbal) and don’t actually play with one another in a traditional sense.

He can easily outrun me to the car (Andy could probably catch him, but I just started walking and running, and I tire easily).  There he found his precious grandma, but wanted mama in backseat?  After I’d gotten in the car and Andy had gotten in the driver’s seat,  Jonah turned to me and said “need help?”  I asked him what help he needed and he pointed to his shoulder.  I noticed Andy had forgotten to secure Boo’s harness to the clips on the back of the seat and I secured each clip, in awe of Jonah noticing this mistake and actually asking to be strapped in more securely.  I gave him a ScareMeNot and he stared out the window, watching for deer and the ducks in the pond as we drove off the property and to Andy’s apartment.

I'd brought Valiant Valerie along (a ScareMeNot) and Jonah held her close as he looked out the window...

I’d brought Valiant Valerie along (a ScareMeNot) and Jonah held her close as he looked out the window…

(This was supposed to be a photo of Jonah kissing Valiant Valerie, but the camera was still set on video, so it’s a one-second video instead).

After lunch and a bath, Jonah asked for grandma stay here? and Andy and I brought Jonah to transfer station. I’d queued up Guster’s Easy Wonderful CD but Andy asked him if he wanted Gunther or radio.  Jonah chose radio, which slightly annoyed me because I know Jonah loves Guster and would have been fine with it if we’d just put it in.  Andy calls Guster Gunther because E (who comes with J to bring Jonah to most of his doctor appointments) always calls them Gunther by mistake.  Music on the Top 40 radio stations all sounds the same to me.  I guess I’m a music snob.

Were I in charge of the music my boy is exposed to I’d play all kinds of different stuff, including Guster: all the Beatles CDs, some traditional children’s songs, Marlo Thomas’ Free to Be You and Me, Elton John, Kula Shaker, Crosby Stills Nash & Young, Billy Joel’s Glass Houses, songs from Sesame Street, Mozart & Tchaikovsky, 80′s pop music, They Might Be Giants, Simon & Garfunkel, the Grateful Dead, the Hilltop Hoods….all kinds of different things.  And I’d never, ever, ever, ever, ever, ever, ever play that dumb Taylor Swift song.

I suppose it doesn’t really matter, so long as he’s not listening to Gangsta rap or death metal.

Jonah’s like me in that his hair grows fast, and already he needs another haircut.  We’d like them to give him a buzz cut at this point, for it is getting to be warm, and that way it’s out of his face and will grow back in soon enough.

I’m anxious to take Boo on walks in the woods, push him on the swings, watch him dive into the pool, smile at his widened eyes when train comes toward us and passes by.  I want to take him to a Guster show and not have to leave.  I want to be with him on the beach, watch him cavort in the ocean and run barefoot along the jetties.

Yesterday M’s daughter J was here; we held hands and ran together to the park, where we kicked and bounced a beach ball around, and went on the slide together, and chased one another, laughing.  M and Jack-dog followed behind while J and I goofed around on the playground.  Later we walked, just J and me, to Stewart’s, where I let her pick out ice cream and a surprise snack for her daddy.  I looked around me and realized people figured I was her mother.  For a moment I knew what it was to be in public as “the mother” of a “normal” kid.

It felt, well….normal.  Which in my world is pretty damn strange.

I have two blooming multicolored tulips in my yard now, and I’ve re-stacked my stone cairns.  Time to oil my Buddha tucked into the bushes out front.  Time to make nature pictures in the woods.  Time to rejoice in the springtime.  May 1st is coming – my favorite day of the year, because it slams the door on winter with the satisfying sound of finality, and who doesn’t love that?

“Ha ha ha ha
People are laughing
Children are singing
Come join the dance

And the walls around us
Which we kept at such a cost
When we turned around
Came tumbling down

Ha ha ha ha
She can’t stop laughing
He can’t stop singing
First day of may!”

First Day of May by James Taylor

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Warning:  this post goes all over the place Please keep hands and feet inside the vehicle.

What a wonderful, sweet boy my Boo was yesterday.

Andy had picked him up the night before so when my mom and I arrived, Jonah was already there. Andy told us Jonah asked for both of us about 10,000 times that morning.  When I walked in, Boo immediately sought out the goodies I carried (one bag with natural potato chips and another full of birthday presents from my friend K). After capitulating warmly to hugs and kisses from my mom and me, he tore into the goodies..tune-fish sandwich…bath with new toys….more kiss?

His perch while eating is atop a white garbage container which sits next to Andy’s kitchen counter. It is Jonah’s dry bar  – and the garbage can, his bar stool. He tucks his legs under him, mama-style, and chows down to his content. Good thing Andy is very clean, but then again, no reason to be a germaphobe when your kid takes 5 baths a day.

only my kid

This is so Jonah

Nearly immediately thereafter (and sometimes during) his meal, Jonah decides it is time for bath. On this day, I help (usually Andy does), and we had fun splashing around in the bubbles with his new, courtesy-of-K, colored straws.

Colored straws!

Colored straws!

Here I must pause to reassert I am a lucky parent in several ways; for instance, it’s exceedingly inexpensive to bring him joy in the form of play. He is 11 and other children his age have lots and lots of expensive things. I don’t even know what. A gaming station, for certain. Hell, even I had one of those by age 12 or 13. (Mine was called Telstar Colortron and played pong). Anyway, I get off cheap. My mom used to buy him all kinds of electronic games and learning gadgets but he just didn’t really like anything unless it played music. Now he just bops along like a playah, listening to hip hop in the back of dad’s car.

cool as a cucumber

cool as a cucumber, pimpin’ the Gs

Then we played blowing raspberries (I have been watching All in the Family a lot).  Boo thought this was great – and, as usual, ended this very slobbery game by sucking his thumb.

He’s got a couple of new teeth (molars?) coming in, too, so he decided to use grandma’s hand to try them out:

he thinks grandma's hand is a teether

he thinks grandma’s hand is a teether

Jonah was happy to have grandma along in the backseat, something he has not tolerated lately. Grandma stay here? he usually says, and my mom stays at Andy’s apartment watching Fox News. But this day he was tolerant, even sweet and lovey. I love taking these pictures of Jonah with his adoring grandma.

o smiley boo

o smiley boo

Oh, it was a good day. A day of grace. A gift to all of us.

At that doctor appointment…the one I didn’t want to talk about anymore last post…Jonah was so very very good, I’d said. So good that the retina specialist could see both his Reticert implant and his optic nerve very well. So well that she turned away from Jonah and spoke to me in a low, controlled, serious voice: I’m very concerned. Jonah and J left the room while E and I stayed to talk to the doc.

The pressure in his left eye is at least 30, and she suspects higher. The optic nerve has thinned considerably, drastically more so than when she saw him a few months ago.  With his left eye, he could barely read the giant E on the chart.

little boo is better at the eye doctor than most adults are, including me

little boo is better at the eye doctor than most adults are, including me

From what I could understand, we are out of options but for one: do what Dr. S (the glaucoma doctor) has wanted to do all along – take the Reticert implant out. It isn’t as if Dr. F (the retina doc) has come to agree with him – it’s that she doesn’t know what else to try.  If we opt not to operate to take the damn thing out, his sight will eventually disappear altogether in that eye. If we opt to operate, the Reticert comes out but it might not do any good at all.  It’s a shot, though doc’s confidence is not high.

I keep remembering how much pain he experienced after they put the Reticert in his eye 3 years ago. It was the first time in his life, at age 8, that he verbally expressed pain. Eye hurt? he cried, hanging his head in despair-like desperation, cradling his forehead with one hand, pain pulling the words out of him.

Since the Reticert isn’t supposed to be dispensing meds anymore, it could just be left there, according to Dr. F.  But now she wants to try taking it out. E asked questions. I asked questions. Of course I forgot to ask a lot of questions. I scheduled the operation for May 14th, figuring there was plenty of time to change our minds, to research, to ask other people.  To think.  Absorb.

There is a doctor who comes from Boston to see patients at Dr. F’s office. I want her to get him over here to see Jonah before we do all this. I need a second opinion, a different perspective. It isn’t that I don’t really love and respect Dr. F.  I do think she maybe has difficulty dumbing things down for we lay-folk.  I didn’t understand well, for instance, that the eye pressure would in turn put pressure on the optic nerve, which is why it’s thinning out.

When I left her office with E, I was in a daze. I think E was, too. Poor peanut butter, she said, her loving nature holding all these children’s hearts to her bosom; her sharp mind keeping track of them, protecting them, listening, keeping on top of appointments, trusting her instincts. She and J are amazing. I have said it before and I’ll likely say it again.

When I got to the van, I was almost openly weeping, fearing the worst — total blindness — ready to curse God pre-emptively for a nightmare scenario which hasn’t yet occurred. Keeping it together for a moment, I kissed Boo soundly and turned away. Then E hugged me and J as well, and I got in my car and cried, allowing a fog to descend on everything. I can’t fight the aggression and the blindness and the 6% proposed fucking budget cut to the Office of People with Developmental Disabilities all at once.

And so I called Andy, my dad, my mom. Told M and a few close friends. A few people at work. People with autism are usually visual learners. The irony would be funny if it weren’t so maddening.  I called Dr. F’s office and asked for her e-mail address. I am not an orator and if I speak with her on the phone, I will forget half of what I want to ask her and most of she tells me.  If I can e-mail her, I can take my time to gather my thoughts and formulate my questions.

When my mother arrived yesterday, we hugged one another and I held on to her tighter and longer than usual. She loves Boo more than anything on this planet, I believe, and that is why she can know my feelings perhaps better than anyone except Andy. We only talked about it a little. We both said we would give him an eye if we could, and then we had an “argument” about which of us should hypothetically give him an eye, and she declared it should be her eye – which sees very well, she’ll have me know. Besides, I need my eye for work, she asserted. It was a ridiculous conversation but it kept the focus (pun intended) away from the fear.

And then the beautiful scent-of-spring Rhinebeck cold and a wonderful day of grace.

If you know me at all you will probably be surprised to hear me say this but I would love to take Jonah to see Pope Francis.  How cool if he were even to be blessed by this man who wants us all to be humble, to protect the weak, the environment, the poor.  I love Francis’ humility and his gentle spirit.  I smile when I read about what he says and does.

I would maybe take Jonah to Lourdes, or a faith healer I believe in (is there any such human?)  I am buying him essential oils. I’m becoming more willing to try anything innocuous as long as it is not downright ridiculous. And fewer and fewer things are sounding ridiculous. You can’t understand how desperate you can get until you walk a mile in the moccasins.

This is why I love working with prospective adoptive parents. I understand their emotions, if not their exact situations. I get it. I know what is like to want something so badly, to have all this love and all kinds of questions like when is this going to happen and is this going to happen and my God who can I trust who really cares who has a heart? I understand what it is like to be part of a vulnerable population.  Plus I am adopted and it gives me a special connection to them all.

Divinity is prodding at me. My faith is so weak. A fucking mustard seed. I am the atheist in the foxhole (though I never was an atheist) in the sense that I find it easier to reach out to God when knocked to my knees, even to a God I don’t understand or can wrap my mind around. It makes sense that there would be a Jesus son of God in order for we humans to wrap our minds around it all.  A human you can relate to – even one who tells puzzling stories and heals people left and right. Why do I struggle so with the concept of God and accepting Jesus into my heart?  Is it all the truths I see in other religions?  Can’t I love and pray to Jesus and still believe others will go to heaven too?

Do I have to believe in what I can’t help seeing as a “special club” mentality of I’m going to heaven and you’re not?

I would rather follow Jesus through actions, evangelize through deeds. I would rather listen and act upon the wisdom of Buddha as well. I would rather believe there is a chance for us all to experience an afterlife, a rebirth, something other than nothing.

At any rate now I am praying. And in my old Catholic way. Praying to the Mother, to Mary, to help us, to intercede on our behalf. The Protestants don’t understand why we pray to some saint to intercede when you can just go straight to God, and I’m not sure I’ve got an answer for them, but I know St. Anthony comes through for me when I lose something important, and I feel Mary listening, empathizing as a mother who raised a difficult son of her own. Sometimes when I pray to Jesus it is more like Guster’s song Empire State:

“I’ve been talkin’ to Jesus, but he’s not talkin’ to me…”

It is difficult to “give it to God,” and it is a fine line. Do you throw up your hands? Are you supposed to step completely out of the way?

Please feel free to chime in.  These are not hypothetical questions, and I am seeking…

He conquers who endures. ~Persius

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“There is love, there is peace in this world.
So take it back; say it’s not what you thought

Grab a hold, take these melodies
with your hands, write a song to sing…
Isn’t such a bad, bad world!”

~ Guster, Bad Bad World

What a wonderful visit with Boo today.  Lately he doesn’t want grandma to come with us to transfer station (our weekly recycling destination) so my mom stays at Andy’s apartment and watches Fox News.  But just like last time, just like she said, he knew exactly what was for lunch.  You could have given me a year and I would have never figured out there was a pattern, even one as simple as every other week.  My mom even brought Jonah a surprise – potato chips and dip. 

He was in heaven.

chips n dips

“chips n dips?”

He wanted mama to help him at bath time, and it was fun to watch him splashing around all goofy and happy.  Kiss hand? was again an oft-repeated request, and we sang his new favorite song, which is actually an old favorite song my mom taught him years ago.  We sing it to the tune of “London Bridge:”

Jooooo—na Russ is Grandma’s boy, grandma’s boy, grandma’s boy!
Jooooo—na Russ is Grandma’s boy, yes oh yes he i—is…

The care workers at his house know the song, as Jonah has taught it to them.

shaggy hair kidwith his lovey grandma

shaggy hair kid
with his lovey grandma

My mother really wants them to cut his hair.  It think it’s cute all bushy and long on top, so I don’t push them to cut it. 

Sorry, ma.

Jonah, leaning into grandma

Jonah, leaning into grandma

And so it must be confessed that Jonah is a grandma’s boy.  She’ll get to see him on her birthday, which I imagine will be her favorite present.

I feel a lot of love in my life right now.  Thank you all for every time you express it toward me, or Boo, or Andy, or any of us.  I’m putting it out there, too, consciously, engaging only in emotions which carry me forward along the river running through the world, which isn’t such a bad, bad world after all.  I’m in a card-and-care package-sending-mood, and I’ve been doing things like writing letters to the people (and the bosses of the people) I encounter in the world who are awesome, who have gone above and beyond, whether they have helped me negotiate Jonah’s Medicaid system or just been really kind and friendly to me at the grocery store.  I know I’d like it if someone wrote a letter of praise to my boss about me.  I hope they all get raises.  Perchance to dream…

When the terrible things happen, like the standoff in Alabama with that 5-year-old boy in the bunker with the Vietnam vet, I try to combat the awfulness with goodness, however I can foster it.  If I don’t, I lose faith in humanity too easily, too frequently.  I become hypnotized by all the anger…by the illusion that any of us is an other to be bullied, manipulated, hated, dismissed, captured, or even killed.

Boo restores my faith in humanity.  It happens every Saturday when I walk into his house and he runs into my arms.  It happens every time he re-directs himself without an intervention…every time he asks for hug from daddy and I see the beauty in the way they embrace…every time he laughs with his silly, uninhibited, pure joy.

I got some good video of his laughter today toward the end of this 40 second video – and a lot of his turning in circles:

I love how the video starts out with my mother admonishing him for something:  That’s not funny… and then at the end how he comes right at me: more hug?

“Laughing brains are more absorbent.”
~ Alton Brown

I like to think Jonah’s brain is a laughing brain.

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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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“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.

OLYMPUS DIGITAL CAMERA

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

OLYMPUS DIGITAL CAMERA

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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“You are always saying something
You swear you’d never say again…”

~ Fa Fa by Guster

Awareness is everything.  I too often play the ostrich, burying my head in the sand.  Not a good plan if you intend to see, or move, or live.  I have turned a corner, maybe, pushed gently but firmly into the light by my amazing friend R.  In part, he wrote to me:

You know damned well it’s the Key to the Garden 
To say, “yes”
To be silent to it, 
And by ‘it’ I mean everything. 
To witness preconceived…
To be the recipient of true mercy,
 
To repent to the beautiful,
 
To witness your own suffering from God’s embrace, 
Rather than punishing that very suffering, 
Locking it in the closet like some kind of monster.
And:
So too do we tend the garden of ourselves, 
We become the fountain
from which beauty becomes.
Open your mouth and pour forth.
The graying thorns push forth new roses.
So seemingly impossible it seems 
To disentangle from their clutch,
Without losing of the flesh, 
When it is merely a step backward,
A patient disentangling,
 
But Jesus H Christ it hurts.
And:
I could write inspiring and encouraging words, a pep talk Chicken Soup For The Soul, 
but I already fell into that trap.
 
I don’t have a fucking clue what it feels like to be you. 
 
Not a clue.
 
What the fuck do you know, R? 
You don’t know shit. 
That is so, that IS so.
 
I DO know that walking towards life is at once the brave path, 
And yet the only one that brings relief.
 
I do know that fucking much.
That much I do know. 

And so I answered “yes,” and something inside me woke up, and I am walking toward life, toward embracing life – all of it, even the suffering and pain – the helplessness and disorder.  At Four Winds they call it “radical acceptance.”
Because one of the things I never say here is how close I have been at any given moment to turning away from life completely.  How my bones feel like bars of a cage… how often I want to crawl out of my skin… how I feel utterly uncomfortable inside my body.  How close I come to running away in a literal sense – to driving until the gas is on empty and then curling up in a ball in a forest somewhere.

Yes, I know how ridiculous I sound.

I can change all of these things.  What you focus on expands.
It shall be an amazing, healthy, happy 2013.

And as if to drive this all home, Jonah was wonderful yesterday.  My mom and I risked the snow we knew was coming and drove down to Rhinebeck, luckily before any weather had started at all.
Jonah wanted grandma in the backseat and he proceeded to steal her gloves and wear them quite happily (which is funny because he won’t wear his own. Maybe we’ll get him a similar pair as these, which he loved and laughed about having “stolen” from grandma):
The satisfaction of a heist well executied:  pulling them on...

The satisfaction of a heist well executed: pulling them on..

Looking over to see her reaction...

Then glancing over to see grandma’s reaction…

I love how he looks like a little guru here, or as if in prayer...

I love how he looks like a little guru here, or as if in prayer…

Jonah sang and laughed and ate tune-fish-sandwich and chips and cranbewwy soda.  He took his bath and we went for car ride to transfer station (where you recycle).

My mother and I breathed a collective sigh of relief when we started home in the snow…we thanked God, almost in tears, for another good day, for a happy boy.

And later, having arrived safely home, I took a few pictures of the beautiful snow falling on my house and lawn.  I put Knockout Ned out there for the ScareMeNot Facebook page, so you’ll see him hanging from our lamp post:

???????????????????????????????

“And what you wished for could come true;
You aren’t surprised, love, are you?”

~What you Wish For, Guster 

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Usually I know how to calm him at first, to get him used to being with me.   Singing softly.  Today I try Guster and The Beatles but he gives me a no to both of those.  I’ve Been Working on the Railroad it is.  We take turns with the lyrics, me singing a line or two, then pointing to him, he picking up tune & rhythm without breaking tempo.

It’s a complicated song as children’s sings go, but he prefers complicated songs with distinct bridges into all-new musical directions, and back again.  Keep it Together by Guster, for example.  I should turn him on to Bohemian Rhapsody or A Day in the Life.

He asks me for hug and so I slide over to him, and he wants kisses on his head, and I wrap my arms around him gladly, taking advantage of this somewhat rare physical closeness I get with my son.  More kisses? he pleads, giggling.  I kiss him all over the top of his sweet little head and then lean back to face him for a kiss on the lips.

SLAP his hand flashes out and catches my upper cheek and eye.  SMACK comes the other hand, fingers now curled to grab and pull at me, though my glasses are off and I’ve tucked my hair under a hood, so contact is minimal.

I caught his wrists after that, and we got him to the apartment okay.

I forgot my camera; this picture is from another week.

When I got home, I did laundry and dishes and raked my whole front lawn, stripping off layers of sweaters and zip-up fleeces until I was wearing just a t-shirt.  I moved in hard sweeping lifts, leaves clinging to the rake, my clothes, my gloves.  The sun and the cool and the wind-less day made for ideal raking conditions.  I felt strong: alive and focused.  I shoved the leaves down inside the bags with one leg, my foot stomping hard, compacting – my nose filled with the almost-decayed smell of fallen leaves.

I’m just a hair shy of the kind of OCD that would have me picking up stray leaves one by one from the lawn.

It felt so good to work fast and hard, to know what to do to complete a task, to literally bag it all up, and to have a different result than when I started.  Anything I can do that brings with it a logical beginning, middle, and end is good.  These blog entries are vital.  Making a difference somewhere, somehow, any way I can.  Even if it’s just clearing a scattered gathering of autumn leaves.  The leaves aren’t going to pretend to go willingly into the bag and then suddenly stage a coup and escape, attacking me with their sharp pointy stems and edges.

Work is important. Tasks are vital.

Otherwise I would go mad.  Mad madder maddest. 

Keep it together;
Can we keep it together?
We’re singing a new song now…
and everything starts today.”

~ Guster

My friend D send me a coloring book in the mail, and I’m about to go have brunch with two other wonderful friends, after which I will take a walk in the sunshine to the park. Maybe make some nature art with what’s left of the colorful leaves.  Or break out the crayons and play in my new coloring book.  Play UNO with M’s kids.  Play with my dog, pet my cat, send out some cards, maybe a package.  Perhaps I’ll even call someone I haven’t talked to in a while.

Just to pass the time away.

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