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Archive for the ‘grandma’ Category

the forgetting

Our visit with Jonah on Saturday was fine, for the most part.

Jonah, trying to blow up both red balloon and orange balloon

getting ready for bath

I took a little video too and caught a brief moment of a ninja-like, out-of-nowhere attempted aggression at Andy.  It happened in the car.  Jonah was sitting behind me and Andy was driving. In this video you can get a tiny taste of how lightning fast Jonah can move.

This time, thank God, he quickly settled back into Dr. Jonah from Mr. Hyde – my mom distracted him.  And Andy is responsible for the music in the background.  My mom was afraid Jonah would choke on a balloon.  Jonah demanded cranberry soda.  I just filmed.

Sometimes things start to feel surreal.

The thing that might be strangest of all is the forgetting.  The forgetting what it was like to parent a child.  I’m beginning to only fuzzily remember what it was like to get him dressed and ready, to put him on the bus, to tuck him in at night.  To change him and play with him.  Then, further back:  watching him play so joyfully in the ocean.  And still further back:  nursing him, our eyes meeting, loving mama and her baby boy.

There is a lot of freedom now.  There is deliverance.  It feels really good.  But I am also in a purgatory of sorts.  I am Jonah’s mother and will always be his mother.  But I am not his caregiver and I can’t protect him, and I think I will always hate that part.  People usually have other children at home.  Jonah’s my only boo.  Well, I certainly was never going to be the great earth mother, knitting blankets and baking pies – spouting wisdom, president of the PT fucking A.

You gotta roll with the punches.  And we really are all in the same leaky boat.

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Jonah’s a big fan of the salad bar bath.

warm water, crisp salad, & lemonade

We had a great visit with Jonah on Saturday, and I went back to eating solid food.  There isn’t much else to report, or rather I’m feeling numb and surreal today.  I’ve been afraid to do much of anything, lest the devil-ache come back.

Is it safe?

Here, as always, are photos to compensate for my word-loss.

swimming’s “closed” – so we waited for the train.     (it came)

Jonah means business when it’s time                           to go to the grocery store!

Ready to roll…

I will see Boo on Tuesday; after my early a.m. neurologist appointment, I should be right on time to meet him for his glaucoma specialist.  I think my mom wants to come to this one.  (His, not mine, of course).

I’m bone tired.   Truly.  Tired in my bones, all tight and hurt-y.

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I haven’t felt like blogging, which is unlike me, but lately it feels like I’m whining.  I feel envy and anger and grief, then I feel guilty for feeling envy and anger and grief.

In the midst of earthquakes and shootings, all I bitch about lately are first world problems:

I forgot to buy coffee creamer.

Jonah has a “management” at school (which is a euphemism for an aggression requiring a “takedown.”)

I have to write two articles for the Capital District Parent Pages this month instead of one, so I’ll have them done before I go to Mansfield, Missouri to see Laura Ingalls Wilder’s home & Pa’s fiddle on my birthday.

I haven’t been practicing/learning my Spanish enough.

That kind of crap.

So I went to my first organized party since I was in Four Winds.  It was my cousin’s son’s son’s 1st birthday.  (Boy, that sure dates me!)  I was afraid to go.  I’m always afraid to go to parties, especially when there are children and those children are regular ol’ kids running, playing, and making everyone smile.  I’m afraid my envy will burst through the fragile veneer of my smile – afraid I’ll cry and make everyone feel weird or uncomfortable.

Then someone says “you should have brought Jonah over,” and I’m afraid my anger will burst through the fragile veneer of my calm – afraid I’ll get snotty and say, “do you think I’d have placed my child in a residential facility if I thought I could bring him to a party?”  He’d attack the little ones and wreak havoc on the party-goers in general.  Of course it’s not as if the person who said that to me was being anything but kind and accepting, but still the anger rises.

None of this is fair.

But I kept the envy down and the anger away and simply enjoyed the people I haven’t seen for so long, all my relatives I love.  I did cry at one point, but it was only because my uncle M was talking to me and made me feel so embraced that my tears were ones of heartfelt emotion, pulled out of me by his loving-kindness.

Small steps.

On Saturday Andy drove Jonah up to my mother’s house.  It looked so threatening in the sky – about to rain, about to rain.  I begged God:  please hold off the rain until he gets a chance to swim (in my mother’s neighbor’s pool).  And then the rain did hold off so he could swim, and Jonah asked for train and we did see a train, and we ate sandwiches and chips and drank black soda.

On another note, I’ll buy a few Powerball tickets because it’s up to $305M.  Because that’s what people do…a dollar and a dream.  I never realized it before but there are all these websites where you can increase your chances of winning through statistical analysis.  I’m sure now I’ll definitely win Wednesday night, and turn my son’s school into a freaking paradise for kids with autism.

A few pictures from Saturday:

pimpin’ his Guster shirt

Jonah, in his element

My boo is still up and down, still attacking with no motivation.  Today when he aggressed, they were taking him to the pool, for God’s sake.

Nice goin’, Jonah.

I’m off to send pictures from the party to my aunt, and then squeeze in some Rosetta Stone.  Then sleep — beautiful, wonderful, awesome, comfortable sleep.

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* I’m not trying to call myself a blog star (did I coin a new phrase there?), but rather to give a small nod to the first video ever played on MTV.  Almost-twelve-year-old me was there to watch it all go down, and damn it was cool.  August 1, 1981 – we just passed MTV’s 31st birthday.  Video changed everything.

It still does.  I don’t know what it is about watching the video of Jonah in the last post, but I watch it & watch it & watch it again.   It’s as if the video allows (forces?) me to step outside myself, seeing Boo through a stranger’s eyes.  I can describe him until I’ve written a doctoral dissertation –but only the video can really show you his abilities, both excellent (swimming & his sense of humor) and not-so-excellent (lack of communication, and inappropriate noise levels).  Watching the video is different than the living of it.  Different scary.  Different real.  Or surreal.

How do I explain what I mean?

He’s ten years old.  He’s my baby.  Too soon to be an adult and, watching that video, I became afraid of all that means and how soon it is coming.  In fact it’s speeding up, as time does when we age somehow, and if I’m not careful I will worry in a million ways which will only waste time.

Operating under the assumption that I’m not involved, would I whip out my camera to film him aggressing and post it here?  I want to say yes – but I don’t know.

Anyhow, I found older snippet-videos, most of him swimming last year.  Here are two:

In this first video we see I am trying to take a photo of Jonah (who very accommodatingly smiled wide for the camera) and then realizing – duh – I have the setting on video.

In this second one you can hear him say “all ny-uh” – which used to be his way to say “all done.”   Now he just says “all done.”  He has come a long way at Anderson.  It happens so quickly, all of this everything.  Sometimes I feel as if I’m in slow motion, watching it speed past me.

For once this writer doesn’t know what to say or how to say it.

(Like that hard as hell Spanish course I’m doing on Rosetta Stone.  They make you say words when you don’t even know what they mean or how to use them.  I say the words over and over and over sometimes before they let me go on.  Never do you know the meaning of a word.  It’s all pictures, and repetition, letting you in on the secret of Spanish 0h so frustratingly slowly. 

Then you have to spell words correctly, accents and all with this keyboard tool they give you.  Then you have to hear the differences between ridiculously similar ways to pronounce two completely different words, like the words for baby and drink.   I have to admit, in English there are single words that mean different things.  Rose.  Lash.  Stream. 

Those are just off the top of my head.  Does Spanish also have this?  Am I even capable of learning it?  I forget all the words.  I don’t understand why it is “Tengo frio” (sorry, I don’t have my accents handy) and yet “Estoy hambre.”  If I’m even remembering that right.  One means I am cold and one means I am hungry, right?  Or no?  When do you use tengo and when do you use estoy?  And why?) 

End of rant about learning Spanish.  But if you know the answers feel free to chime in.  Por favor!

In exactly one month I will no longer be the answer to the universe.  (Unless I die before that, in which case I will always be the answer to the universe).

We’re coming up on the first anniversary of Jonah’s going to Anderson.

I miss him a lot tonight.

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It was a strange weekend, but I don’t much feel like writing.  I’m tired and worn, yet not unpleasantly – kind of like an old blanket on a laundry line in the sun.  But Jonah got to swim, and see grandma and the train, and the bite wound he incurred at school is healing very nicely.

I also had my first (and last) garage sale on Saturday.  Never again.  Good God.  I thought it would be fun and lucrative, even, perhaps.  It was none of that – just hot and never-ending.  I probably sold half the stuff in the two hours before the official opening of the sale, while I was setting up.  ‘Twas very stressful for someone with my Virgo-ian tendency to have everything just so.

I tried to stay enthusiastic and friendly throughout the day.  “Welcome to my highly negotiable garage sale!”  I shouted like the ringmaster at a circus.  “There’s free cold water in a cooler here,”  I gestured in tour-guide fashion, “and a cooling station along this wall.” (which was actually a sprinkler, set on low, that I looped over our energy meter).

The first two things I sold were the coat racks upon which I’d planned to neatly hang the nicest clothing.  The rest of the day pretty much went downhill from there, save for the surprising number of friends, relatives, and co-worker visitors who came to see me and, in some cases, even helped me.  If it weren’t for R’s brilliant product placement, for example, I’d never have sold those water-slip-slides.  Never underestimate the ignorance of someone who’s never held a garage sale, or the wisdom of someone like me, whispering in your ear:  don’t do it!

Here are pictures from Boo swimming at grandma’s neighbor’s house, God bless them for all time.  Jonah swam, went in to eat, back out to swim, over to see train, and back to grandma’s.  He was a joy and had a wonderful time.  I’m so glad Andy brought him up to see us on Sunday!  I needed to see my little boy.

Grandma and Jonah

Jonah gleefully falls off the float

Andy watches Jonah, about to jump

Waterchild

Watch out Michael Phelps

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“We must be willing to get rid of the life we’ve planned,
so as to have the life that is waiting for us.
The old skin has to be shed before the new one can come.”

~ Joseph Campbell

Me & Boo

Window

by Guster

A gaping wound tells the story of it all
A man lost only to find
What was left of his mind
With no hope of a scar at all
You say, “Go slow”
But something’s right behind me
I can run away for only so long
It will not stop
I will come down
Oh no
Let me find my way
I’ll take you to the edge
Go across that window
And I’ll carry you there
Oh when nothing goes right
Oh when days don’t come tonight
Oh when all I see is the error of my own enemy
A man alone and cut and torn for it
His whole life friend after friend
They’re all a flash in the pan
With no hope of rejoice at all
Let me find my way
(Don’t be scared of what you might be thinking)
I’ll take you to the edge
Go across that window
And I’ll carry you….

I love how you can see his reflection in the car window here

What a beautiful weekend this is.  What a happy boy was Boo yesterday.  He is the dawn after my darkest.   Jonah is such a joy…clever and curious…a mischievous boy with a sometimes silly, sometimes subtle, sense of humor.

And this time when we visited the river/train he really wanted to dip his feet in the water.    (The whole thing was my fault because I took off my sandals and dipped my feet in, and then he wanted to also, so we both did).

We splashed around together and giggled and got pretty wet – the kind of wet you don”t worry that much about because it’s sunny and warm enough to dry you pretty quickly.

Jonah, splashing around with Knockout Ned

Captain Jonah surveying the land

for Boo there’s nothing better than water

A patriotic Jonah sports a shirt from “Pa”

Jonah, watching them take a boat out of the water near the dock where he usually sits

After my mom and I left, Jonah stayed with his dad and they likely played some more, hit some of Jonah’s favorite hot-spots.   Again today Andy went to pick up Boo, bring him back to his apartment, give him lunch, a bath,  and spend time with him.

Maybe he will be able to take him overnight some day.  It is enough to have small steps.  It is enough.  Seeds, sprouting slowly, but sprouting nonetheless.

Jonah meditates under his daddy’s careful watch

Today I gardened and gardened and gardened.  I found all the little pots I could and filled them with soil and impatiens, and I dug in the earth and planted some.  Things are about as pretty as they’ve ever been in both my front and back yards.  I weeded as much as I could, and M mowed the front and back, and then we were hot and tired, so we came in and I decided to sit in front of my fan and blog.

My lovely flowers…the key to flowers is perennials, I think.  More perennials.  I am so not a gardener, but when I garden I feel joy.  I don’t use gloves…I need to feel the soil and let the earth move through my fingers.  (You get very, very under-the-fingernails dirty and usually a whole lot of scratches this way, but still it is the only way I can do it).

I’m going outside to take pictures of the friendly flowers and prickly plants and prickly flowers and friendly plants I played with today.

somehow the focus is on that bud off to the right…

I think Emily was correct:

“Hope is the thing with feathers, that perches in the soul, and sings the tune without words, and never stops at all.” ~ Emily Dickinson

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There is a fine line between telling my story “sans sugar” and telling too much, or, worse, lacing it with saccharine.  The truth is, the narrator is still not exactly sure where she belongs in this world, if she belongs in it at all – but also that this doesn’t matter.  It’s all about Jonah.

For an only child like me it’s a tough pill to swallow sometimes.  It isn’t at all about me.  And yet, can I be relieved of my role in all of this?  Of course not.  Jonah needs his mama.

Still I sometimes think:  I can’t live this life anymore

And:   What a nice hot day to park the car at the top of the Rhinebeck Bridge — so perfectly inviting for suicidals – no barriers to your leap, yet reminding you every few hundred feet or so that LIFE IS WORTH LIVING.  I know I have mentioned this bridge before.  I’ve always wanted to fly, and that view is so spectacular, and if I ever did come to that fine line and cross it, I think that would be my place to fly-bye

And:  I wonder if other people have places in their minds, like I do.   My place is like the cyanide pill they ostensibly give you when you go up in the space shuttle.  It is a choice you may never have to make but one that’s comfortingly there nonetheless

I still, though, think:  I have to do whatever it takes to ensure Jonah’s health, education, happiness, and nurturing.  I must ensure everything.  Some of that everything is making sure things can stay the way the are, and it looks like things are going to need my help for that to happen

And I berate myself:  You ain’t going nowhere, fool

And I can dance around things that were said this weekend, and all the millions of ways, as usual, in which I was spectacularly weak.  But I’ll post pictures too, for Jonah was mostly good, albeit scattered and frenetic.

It was a sunny day, almost too hot.  A beautiful Saturday, and a good portion of Jonah’s day and mood mirrored that.

Andy was kind enough to drive Jonah up to visit us at my mother’s house.

my mom’s next door neighbors kindly let jonah use their play-set and pool, once it’s opened. jonah asked for “Pool?” a dozen or so times.

At home way at the top, my climber-boo

hey mama!!! hey mama!!!

Eventually he wanted to go see train so we piled in the car, Jonah singing along to the Top-40 Andy’s got on the radio.   We were relieved to see the green light down the tracks meaning a train is coming, so we pulled into a parking lot to wait and watch for it, like we’ve done hundreds and hundreds of times before.

This time, though, he got scared of the train after a few seconds.

This was the last of the pictures for the day.

Out of nowhere he grabbed for my hair.  I know what to do when someone pulls your hair (grab their fist and pull it in toward your head) so it wasn’t a big deal.  Andy got out of the car to let me out of the car, and then Jonah burst into tears, sobbing and upset.  Within minutes, though, he was okay and we were able to say bye bye to the train (thank God it wasn’t a long one) and go back to Grandma’s for another shower.  His beloved train reminded him of how much he misses home?  No.  Don’t invent things inside Jonah’s head, I tell myself.  You’ve got enough troubles inside your own. 

Today M and I went on a long Sunday ride, just like in the olden days when it was deemed neither wrong nor unusual to do so.  When we got home I planted flowers in the God-awful hot for about 13 minutes until I felt I would die.  I thought about Andy, and how unless I am mistaken he is working for somebody today doing some mulching under this same heat, and how under that same sun too my boy probably asked for pool ad infinitum.

Tomorrow I have to go back to producing numbers; here I can produce words.  It’s a fine line, my tightrope.  Sundays are difficult.  And I only took 3rd place in a “query letter” contest I was hoping to win.   And I’m not schooled in query letters.  Looks like I have some work to do.  First place was the opportunity and $500 to self-publish.  

I don’t really want to self-publish anyway.  Isn’t that, after all, what I’m already doing?

Anyway.  Jonah has his daddy close-by.  Today, after all that hot work in the sun, Andy came and got Jonah and kept him for another part of the day.

“He was fine,” Andy told me on the phone. “He had a fun day.”

For me, for now, it is enough.  As usual it is still only early evening and I am bone tired.  I imagine Jonah settling in to sleep.  I miss watching him sleep but imagining it is sweet — I can use memories and visions and dreams.  It is good.

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

Yesterday when we sent to see Jonah he was a very good, happy boy – and we did the usual things but he was having so much fun, laughing and singing, giggling and lovey.  I took a few great pictures that capture his joy, and the feel of the day…

My mom drops me off after the visit and we look at one another:  my long, bony hand holds her long, bony hand — and we say, sometimes in tandem, “Thank God.”  I remind myself not to hope.  Wait, that’s not quite right.  Always there is hope inside me.

It’s more like the expectation of permanence I need to dissolve.  I am so grateful.  Now.  Now.  I am grateful now.  Stay in this place, Amy.  It’s the only place to be, really.  Anything else is an illusion, the voice inside tells me.

“You must live in the present, launch yourself on every wave, find your eternity in each moment. Fools stand on their island opportunities and look toward another land. There is no other land, there is no other life but this.”

~ Henry David Thoreau

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Yesterday’s visit with Jonah was awesome!

We all expected him to be thrown off by his temporary move, just the night before, to a different house for 4 or 5 months while Birch House is renovated.  But the caregivers know how to prepare the kids.  Staff took the children to the new house lots and explained over and over again about the move.

But you never know what’ll set Jonah off, and this kind of change seemed likely to have made him angry.

To be honest I really didn’t want to drive down at all.  After losing Sugar and spending a couple days in an “off” place myself, I hesitated to risk another bad Saturday, another violent visit.   My mom would have gone anyway; nothing keeps her from seeing Jonah, but she’s more selfless than I.  In the end I went with her;  I missed Boo awful too.  Plus, it was such beautiful weather so I decided to spin the wheel and hope it landed on GOOD DAY.

It did.  Jonah was happy and excited.  He and I sat in the back of the car on the way to Andy’s apartment, and he sang with me, played with his hands, and looked up front at daddy and grandma.

But he didn’t ask for “daddy in backseat” like usual.  He was content with mama.

We played where is thumbkin and I taught him how to be The Fonz.

Aaaayyyy!

Jonah wanted to kiss me lots.

He’s got this little game he plays where he asks “kiss?  kiss?”  and we move our faces in slowly toward one another until, at the very last moment, he smiles and I end up kissing his teeth.

“Yuck!”  I say with an exaggerated icky-face, which sends Jonah into hysterical giggles.

“Kiss?  Kiss?”  he asks again.  “Oh—kay”, I say slowly, “but only if it’s a real kiss.”  So he arranges his face into mock-seriousness  as we prepare to move in for our kiss but he just can’t help it — the sides of his mouth twitch in suppressed laughter and he and I both start giggling.

Of course everybody gets his or her share of “huck?  huck?” and real kisses too.  Hugs and kisses, bath, park, turkey sandwiches, black soda, Hudson-River-by-the-train-station:

Then holding daddy’s hand and walking back down to see Grandma again…

In the car he wanted “more kisses?” and it made my heart fill up with something usually not present anymore.

“Kiss hand?” he asked, holding his arm out –so I took his little hand and kissed it.

“Kiss cheek?”  he wanted next, so I leaned over and soundly kissed his soft-child cheek.

“Kiss quiet?” he then said, holding out his pointer finger.  I took his finger to my lips and kissed it, tilting my head at him inquiringly. 

Kiss quiet?

He held the finger up to his lips:  “sshhhh.”

Oh!  “Yes, Boo,” I whispered, smiling, admiring the clever way his mind constructs language, the way he is a new kind of lexicographer.  “Kiss quiet.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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