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Archive for the ‘hospital’ Category

I see Jonah in bits and pieces.  He is behind me on a car ride, he is requesting The Jungle Book, I’m starting the movie, I’m pouring him cranberry juice.  Sometimes I’m trying to get a photo.  In most of the photos he’s in the backseat of the car or sitting at the table or on the floor, eating something.  He almost always wants to nap but only wants mama about half the time.

     

Today when I asked if he wanted me to lie down with him for a nap, his answer was unambiguously no.  And when his answer is no, my visit is short.  Every other week my mom is with me.  I used to have people join me on my mom’s Sundays off, but not so often anymore.  Andy always manages to visit with Jonah several times a week, no matter how tired he is or how much he has worked that day.

The beginning of November was sunny and warmish, but lately the days are short, cold. Dreary.  Seemingly always raining, dark, drizzly…we even had snow already, which I prefer, if it’s going to be cold anyway – and most days I am tired, often depressed.  It’s hard to write about Jonah when there isn’t much going on where he’s concerned.  I guess Jonah’s ambivalence or indifference toward me is better than an attack – a thousand times better.  I should be grateful for it.  How quickly I forget how bad it can be.

Props to his teachers and caregivers.  Sophia, his head classroom teacher, sent me a great photo of she and Jonah in the classroom during their “Charlie Brown Thanksgiving” celebration.  Just like in the TV special, they feasted on toast, pretzels, jelly beans, and popcorn (which I’m sure the kids loved) and I guess Jonah had a blast.  Could we ask for a better, more energetic, patient, creative, and loving teacher?  Not in a million years.

I love seeing Boo happy. I wish I could stand behind a two-way mirror and watch him in class, or at the rec center, or hanging out at his residence.  Videos and photos are the next best thing.  One of his caregivers at the residence even texted me two little videos one day, of Jonah jumping around on a giant beanbag and laughing his head off.  I don’t know how to move the video from my phone to the computer, though.  Maybe I’ll ask the youngster at work.

I’m tired.  Maybe I’m not getting enough iron, or potassium, or protein.

Sometimes the days seem lengthy and meaningless, and there are days I go to sleep old-lady-early.  I forgot to take my meds a few different days recently, and paid for it dearly.

Thanksgiving was as successful as Thanksgiving gets, though, and believe me I’m grateful for it.  Jonah and Andy made it up to my mom’s house safely and without incident, and when we took our car ride, we saw a long train within minutes.  My mom made delicious dinner and packed it up for all of us just like she’s been doing for 5 years or so now.  Next year I want to try making Poppy’s dressing.  (My grandfather, who died in 1999).  His dressing was legendary and time-consuming to make…my mom doesn’t attempt it anymore and I miss it.  Funny, the things you remember, the details of life you long for once they’re gone.

Then, the Saturday after Thanksgiving, my awesome sister Barbara was taken to the ER and abruptly moved to ICU with bleeding ulcers, breathing problems, and ridiculous leg pain and bruising.  While they were figuring her situation out, my sweet Uncle Donny had a heart attack.  He had a stint put in and was somehow “fixed” and home two days before Barbara.  I spent as much time as I could with my sister, trying to advocate for her when it seemed they weren’t managing her care very well.  There was one day when I felt like screaming Shirley MacLaine-in-Terms-of-Endearment style:

My mental illness has been showing.

I’m having full-blown panic attacks out of nowhere.  It’s always a déjà vu feeling, usually triggered by something – a certain word or phrase sets everything into motion.  Sometimes it’s a snippet of a song or a line in a movie.  Then I’m caught on a memory-train tunnel; a piece of my brain unlocks and floods with terrifying thoughts – things I don’t want to see or hear, the confusion of not understanding what’s thundering through my head while at the same time remembering, recognizing, the recognition terrifying, and I am forgetting or unable to breathe, a burst of fire in my center, my heart thumping odd strong rhythms, and then I’m falling from my chair to the floor, falling away from my consciousness, saved at the last minute by breaking out in sweat, knowing how to breathe again.  Moments later I always try, almost unwittingly, to recall what I was thinking, what was so overwhelmingly scary – and even as I seek it I am frightened to find it.  I never do find what it was that started the tornado, nor what was swirling through my head.  It leaves me feeling insane, or at least like I am facing going insane.  I call it a panic attack because I don’t know what else to call it.  What does it matter what you call it?  I’d do anything not to have another.  They are the most horrifying moments of my life.

Two workdays last week I cried on and off all day, for no reason and for every reason.

Still I worked my jobs and ate food and went to sleep and kept moving forward.  I have friends and a cousin in various degrees of distress and depression, and I want to help them.  More often than not, though, I’m right there with them and can only empathize with their dismal forecasts and downtrodden spirits.  Some of my extended family are feuding, and people are hurting.  It seems we’re all slogging through the holidays; I’ll be glad when the year turns and there is the promise, at least, of the renewal of spring.

I am not like this every day.  I’m not.  I sing and I smile and I do my best to combat the hate in the world by trying to be a good person.  It’s just a struggle right now.  I chose to write this in the midst of it, but I am not trapped under it.  I promise. I’m a Weeble.

And, as all Gen Xers know…Weebles wobble, but they don’t fall down.

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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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Hi everyone

Jonah and I and Andy have been living at my mom’s house since Jonah’s operation on Tuesday.  She has no Internet access so I am running home to pick up clothes and hurry back; Jonah needs constant vigilant attention right now.  Although the operation went well and he is okay (thank God), he is uncomfortable, often unbearably demanding (wanna go see train?  want breakfast sandwich?   want cupcake? — over and over, ad infinitum, and sometimes at all hours of the night), and, at times, extremely aggressive.

He has a follow-up appointment on Monday, after which we are going to try to bring him back to his residence.  My mom and Andy and I are scratched, bitten, kicked, and hit on a daily basis, and since Jonah MUST NOT touch his eye it takes all three of us to handle him.

When I return to write more it will be to express far more gratitude than I am feeling right at this moment.  I will say, for now, thank God for my mother – for without her I don’t know where we would be or what we would do.

Thank you to everyone who has reached out with caring support.  It means much more to us than you know.

pre-op, Jonah holding his ScareMeNot, Deep Breath Dudley

Pre-op, Jonah holding his ScareMeNot, Deep Breath Dudley, with daddy

waking up right after the operation

waking up right after the operation

During a calm moment -he got to see his beloved train...

During a calm moment -he got to see his beloved train…

Back as soon as I can be….

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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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“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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Resentment: Def. A feeling of indignant displeasure or persistent ill will at something regarded as a wrong, insult, or injury – real or imagined.

Andy has brought Jonah to three post-op doctor appointments this week.  God knows what would happen if he did not live where he does and have the job(s) he does.  E and J have been unable to bring him to his last 4 appointments.  What does the school do if there is a child who needs an eye surgery and doesn’t have the transportation to get there?

The laser surgery was medically successful, at least initially, but I had to take the whole day off Monday because everything happened excruciatingly slowly.

This video shows Jonah, gowned up and ready to go, stuck in a room Does he like Dora? the nurse kindly asked and we said yes and we said sure and we said thank you when all we wanted was to get going. Andy is standing between Jonah and me as Jonah walked his circles in the small space of the room.

Five minutes after this Jonah had a major flip out, throwing himself on the floor in the hallway, kicking, screaming, pulling hair, biting.  Nobody came out to help us.

Eventually we got him back to the room and calm.

O

The operation itself was quick.  Jonah got sick afterwards and kept wanting to itch his eye.  so I used a tissue to gently press on the eye, and I kissed it soundly, over and over.  Kiss eye?  Kiss eye?  Yes, Boo.  Kiss eye.  Of course kiss eye.

O

It was more difficult than usual to send him back to school, an hour and a half away from me, where I see him so infrequently and have so little control over what happens to him.  I have to trust.  One of the check-in people on eye operation day noted that Jonah was at a residential facility.  She mentioned that her daughter was autistic and how she would never, ever trust anyone to take her precious baby away from her.  “I don’t trust nobody with my baby,” she declared.   It was as if she had slapped me in the face.  Who says that to someone whose kid is already in a residential facility?  What do you know about why we did it?  I wanted to yell.

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Jonah & Andy, walking the halls before the room where you gown up.

– – –

And so I crawl along, filled with dread, with grief and terror for this world, with my heart broken for those at Sandy Hook in CT.  I read all the intelligent arguments about mental illness, parenting, gun control, and violent games/TV, and I find no answer in my heart — and that, maybe, is what frightens me most.  My mental state becomes fragile when I am confronted by humanity at its worst.

Which did not help when very recently I was the target of verbal anger, delivered in front of others and with a ramped-up rage that left me in disbelief, filled with embarrassment, and completely stunned. Despite a nonverbal apology later for the “confusion,” (not the behavior), I think maybe too many people enjoy railroading over people like me, who don’t fight back.  One witness, upon seeing my face fall, told me coldly to “suck it up.”  Maybe I really don’t belong in society, such as it is, because that kind of behavior seems so foreign to me that I have no response but tears.  It will pass, it always does, I regain the strength and something restores my faith and I keep on going.

Yet there is a lot that’s wrong with all the people in this world.  With our priorities and with our ignorance and with our anger.  All of us.  There are a lot of things one can say about me but I will say this for myself:  I may be meek, but I am kind, and I don’t take advantage of people’s weaknesses or vulnerabilities, and I care about how other people feel, and I have never treated anyone the way I was treated today.  So perhaps people like me really shall inherit the earth, like the Bible says.  Watch out then, bullies, because things are gonna get a whole lot more mellow. (Quite rightly).

If I were a Buddhist all of this would play out in my head and heart quite differently.  I would be thankful to this person for their challenge to my ability to be compassionate and understanding.  I would consider them my teacher.  I would not only forgive instantly but also revere the perpetrator – very similar to Jesus’ “turn the other cheek.” That’s some serious shit to truly take on, though, which makes me admire earnestly practicing Buddhists and Christians all the more.  Perhaps I should just up and go to Plum Village for a while.  I need to pound the lessons into my head.

Of course this whole story – every little bit of it – is nothing compared to what has happened and continues to happen in Newtown, CT.  Burials, burials.  An entire community with post-traumatic stress disorder.  Pain-filled awakenings from nightmare hours of darkness.  God only knows the horror.  God help all the mourning people. I just can’t muster much joy in Christmas this year;  I have had the wind knocked out of me and am only a stranger, miles away.  But I can pretend, and the pretending will become real.  Smiling begets smiling.  Breathing allows for release.

Hope.

At least I am still able to crawl along.  To let go of the resentment.  Breathe, breathe.  Let it go… Feel gratitude.

I’m a Weeble, you see.  I wobble, but I don’t fall down.

Weebles just, well, rock on.

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“Rich man can ride and the hobo he can drown
But I thank the Lord for the people I have found;
I thank the Lord for the people I have found

While Mona Lisas and Mad Hatters
Sons of bankers, sons of lawyers
Turn around and say good morning to the night
For unless they see the sky…
But they can’t and that is why
They know not if it’s dark outside or light.”

~ Mona Lisas and Mad Hatters, Elton John

I have not felt like writing.
I’ve been playing online poker and sending out (mostly Christmas) cards,
playing with stickers & markers like a kid
listening to (new to me) old music from the early 70s
(Genesis and Elton John, their really old stuff…)
I’ve been staying up way later than I used to
and trying to unravel the sticky red tape of Medicaid
and trusting it shall be unraveled, soon & successfully.
I’ve been dreaming of the Pacific sun over the Big Island
and not thinking about Jonah’s (4th) eye operation on Monday.

Perhaps some pictures. I’m just so very tired.

O

He looks like a pissed off mini-Beatle in this photo.  And, more and more I think, in pictures you can tell his left eye looks so different from his right eye.  Evidently he has just had a haircut, and S, one of his direct care workers, says he is muy bonito.  (She speaks Spanish and if I had kept up with my Rosetta Stone, so would I).  I can’t wait to see him on Saturday.  I couldn’t go last week because I had the kind of migraine where you puke 8 or 10 times and lay there in the bed in between, twisting and pushing your face into the pillow to seek comfort, cushion, relief.  Anything, anything.  I was so desperate.  I’d never hold up under torture.

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Jonah is high-fiving E, one of the kick-ass caregivers; she keeps track of all his records and she advocates, smiles, hugs, and is generally awesome.  Plus she and J drive him to and from many doctor appointments.    Here they are at Jonah’s recent glaucoma doc.

I took this (nothing really happens) video sitting next to Jonah in the backseat of car ride.  You can see how all around his lips are chapped (we took care of that in a few days with some Burt’s Bees) and he is rhythmically rocking to some Top-40 song Andy has on the radio she said disdainfully.  I like when he gets all smiley and turns toward the window.  By the end he reminds me of Carl from Slingblade.

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Manzo likes to be inside boxes and bags.  The bag is appropriately from the World Wildlife Foundation. <– Just as I typed that M opened the door to let Jack out and Manzo scooted out as well, jumping the fence into our next door neighbor’s yard immediately.  I am trying not to panic because I know we can’t catch him if he doesn’t want to be caught, and it’s cold out so he should come back in.

Damn it though.

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