Happy New Year (from George, Christopher, Gracie and Jake)

Happy New Year, everyone!!!!

2010 bit our butts big time.

(Was reminded of just how much when I combed through the year for my 2010 "best of" wrap-up post)

(Would everybody please just stop dying, already?)

Here's to a terrific 2011 for one and all!

(Raising my virtual glass of champagne to clink with you all.)

(And as long as it's virtual? Make it Pol Roget Cuvée Sir Winston Churchill, please.)

(In actuality, we had Martinelli Sparkling Cider.)

(And it was just me and the husband playing Monopoly with a very hyper, over-tired Ethan at the stroke of midnight.  Jake had fallen dead asleep on the rocking chair at 10 PM, and I'd been able to sleep-walk him to bed.)

(Ethan was winning, of course.)

(And all sugared up.)

(It was so very fun to put him to bed at 12:30.)

(The words "please, darling, just shut up and go to sleep" might have crossed my lips at about 12:55)

(But I would never say that, so it must have been more like: "If you don't stop giggling and calling me George, you will lose all screen time for the rest of the weekend.  I love you, now go to sleep.")

(I might have told him if he continued to call me "George" and his father "Christopher" I was going to start calling him "Gracie."  This might have been unwise, as it provoked yet another giggling fit, even though the reference was lost on him.)

(Ethan is going through a bit of a "class clown" phase.  Please let it just be a phase.)

(Ethan, balancing on the knife edge of funny/annoying ALWAYS pushes it too far and tips into pure annoyance.)

(He finally fell asleep.)

(If Jacob wakes him up early - as he inevitably does - Ethan is going to be just so much *fun* in the morning.)

(Sigh)

Say Goodnight, Gracie.

Goodnight.

And Happy New Year, my friends, Happy New Year to you all.


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The Squashed Best of 2010

It's the end of the year, a traditional time to both reflect back and look forward.  I noticed a theme making the rounds among some other blogs: a year end re-cap.

Specifically, Scary Mommy wrote  "2010 in Pictures & Posts" and then invited others to participate in her Year in Review linky.  Then Theta Mom picked it up and ran with it, and that's where I took notice.  (And now, thanks to my friend Cheryl of Little bit Quirky, I am also connecting to Jenny Matlock's Alphabe-Thursday New Year link-up, too.)

Me?  I am never too proud to steal borrow and then pay homage to good ideas from others.  So here it is, the FIRST annual Year in Blog wrap-up for The Squashed Bologna, my best of 2010.

If you're new here? Warning: it's been a pretty intense year with two important deaths and a lot of pain around my son's autism.  So if you want light and funny?  May I suggest November's post.

Here are some of my favorite Squashed Mom posts from 2010:

January: {This one is easy - I wasn't blogging in January - so nothing!}

February: Imagine that {My first official "Ruminating Ramble" about age and memory and looking ahead and...}

March: Nearly Finished Business {My thoughts on lovingly letting go of my father, preparing for his impending death}

April: From Birth To Death (and the messy stuff in the middle) {The post I took my tag line from; reflections about my sons, sparked by their differing reactions to my father's recent death}

May: From Autist to Artist {This is my "big one" about autism, the one that put my little blog on the map}

June: A Little Respect {My love letter to Jacob's new special needs school that sent their acceptance letter to HIM}

July: Mourning in the Morning  {Feeling sad about how my sons are just not getting along any more}

August: Flowers of Late Summer {Reflecting on the bittersweetness at summer's end and looking ahead toward my mother-in-law's passing}

September: Sitting Here in Limbo {What it feels like in the hospital, waiting for my mother-in-law to die}

October: Sometimes it's the little things {Finding and cherishing the little bits of happiness among the sad, the pearls amidst the turds}

November: The Conversationalist {Reporting a hysterical conversation with my son Ethan}

December: The Beauty of Each, Our Every Child {Another "big" post about autism: thinking what might have happened to my son Jacob, were he born in another time and/or place}

and on to 2011 we go....

Now, me being me, I couldn't possibly do this without talking about the process by which I made my selections. 

For some of these months the choice was a no-brainer, like May, which held my "famous " post about autism.  For others it wasn't easy.  Especially for March the month my father died, there were a number of very meaningful posts there.

And then there was that notion of "favorite."  Some months had posts which had been specifically linked to by others.  While I may have liked these posts, was I being influenced to chose them myself because they had the added shine of having been acknowledged by outside others as being "good"? (And does that matter?)

And then there were months like September... how do I chose between poignant posts about my dead father, about my dying mother-in-law, or a sweet funny one about my autistic son?

In the end, of course the list is somewhat arbitrary, based on how I felt about my posts at the moment I sat down to my computer to write this list.  On another day, the list would have a somewhat different configuration, and that's OK, no need to be definitively definitive.

Finally, I would like to thank each and every member of the many intersecting communities who read my blog and whose lives my writing touches.

Many of you are writers yourselves, and this year, my first year of blogging, has been an incredible expansion of my life as I have connected with you.  Others of you are my friends in real life, and I so appreciate your support here as well as out there in "the real world."

There are no words to properly say "Thank You" from the depths to which I mean that.

My life has been transformed this year.  I lost my father, but found my voice.  And life will never be the same.

Here's to another year of community building!

Happy New Year to one and all!
 

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Something Wonderful

At the pediatrician's office with my son this morning, I was reminded of something to be thankful for.  We hadn't been there in five months, not since my sons' annual physicals this summer.  And before that?  Last spring... maybe?

This morning at 8 AM when I went to call the doctor's office, I had needed to look up the number.

And then the particular pediatrician my son saw was the same one he had seen first at a week old, on his first doctor's visit ever.   She'd had another child herself in the intervening years, had a few more gray hairs mixed in with the chestnut brown.  She was happy to report that my son had a simple cold with his croup, and write that very dear prescription for prednisone, which will (hopefully) keep Jake from having another night like last, tonight.

And then we spent a moment acknowledging that we had barely seen each other in years.  "Yes," I'd said, "we are no longer frequent fliers here.  Remember those first years when I had your practice's number on speed dial?  I think you were on call some of those nights when I had to phone in with a sick child at 2 AM." 

And truly, it was like looking back to another lifetime ago, remembering those early years, because things are so different now.  My sons are eight, nearly eight and a half, poised on the brink of big-boy-ness, but still seeking Mom's lap for cuddles.  And Jacob, with autism in the picture, will clearly be little-boy-like longer still.  But also?  Getting big, fast.

Today it was hard to move myself out of my whiny, complaining space into finding my gratefulness.  But I wanted to, needed to.

As I look back over this year there has been so much shitty, shitty crap, but also, amidst the crap, the gems are there, too.  And today I was actively treasure hunting, trying to focus on the positive as the year winds down to its last few days.

Four more 24 hour periods, and then, onto the next.  Thank goodness.

And yes I know how arbitrary a marker a year is, that calendars are an invention, a human creation, like longitude and latitude marks on a globe, imaginary lines that hold significance only because we all agree on them.

And being Jewish makes this even clearer since we get to have two "New Years" every year.  Ethan asked recently which one was the "real" one, which lead to a whole discussion of the above, how they are both real and also both artificial.

I guess the truest year markers are the natural ones, things like the solstices and equinoxes, that have observable dimensions; the winter solstice being the clearly measurable shortest day, longest night (with the summer one the opposite).  The vernal and autumnal equinoxes have those perfectly equal day and night ratios, twice a year precisely.  At least here, far north (or there, down south) of the equator, they do.

At the actual equator where day and night are always exactly the same, each 24 hours offering alternating 12 hour periods of light and dark?  All this stuff is hooey.

Is this one reason why tropical cultures have often embraced a more "live for today" attitude while those evolving in the nether regions where one must hunker down to pass through a long cold dark winter holding the promise of warmth and sunshine solely in your mind for months have frequently taken on a more "work hard and suffer now, enjoy later" philosophy?  Possibly.

All I know is that right now I need to mark the passing of time, to find a way to put this dreadful year behind me.  And also?  To acknowledge the lovely things that have happened this year, too, the gems among the crap:

I began this blog, and found a whole world, a community I did not know existed, which has blossomed into something wonderful beyond my wildest dreams.

We found a new school for Jacob, which has been all we hoped and dared to dream it would be: the right school for him.  He is growing and blossoming there something wonderful, beyond our wildest dreams.

Ethan has the perfect teacher for him in this so important third grade year.  She is lovely, a living Ms. Frizzle.  He no longer thinks history is boring.  He spent an hour the other day quizzing me about the Kennedy family.  He wants to know who my favorite president was.  We are googling interesting facts about WWI together.   It's something wonderful beyond my wildest dreams.

And as to 2011?

Here's to hoping it is something wonderful, beyond our wildest dreams.

For me and my family, and for you and yours.

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Croup! Crap!

Yeah that's the best title I can come up with after being up all night with poor Jakey.  Sorry. 

I should have known it was coming when he sounded so froggy this afternoon, as laryngitis is related to croup.  But it had been so many years since he'd had it that I was hoping he'd outgrown his tendency toward it.  Apparently not.

There is a nasty cold making the rounds in our family and now it's his turn, apparently.  On vacation week. Of course.

The thing is he hasn't been sick in so long, I'd kind of forgotten the drill.  Yeah, I know how strange that sounds.  He goes to school, he goes to therapy groups, goes to Ethan's school to pick him up; he rides a school bus, city buses and at least once a week he takes the subway with me.

Jake is exposed to a thousand germs every week. But he has gotten sick about once, maybe twice a year for the past 4 years or so.  Go figure.

I am guessing that the thousand vitamins and supplements we give him to strengthen and balance his immune system have something to do with this. Or maybe he's just naturally resilient.

When he was 2 and 3 years old he had the requisite 7 or 8 yearly colds/bugs/flus that they say are necessary to teach the immune system how to recognize and fight invasions properly, priming the pump, as it were, to function well.

And when he did get sick, well, at 13 months he had his first case of croup. On vacation, of course, the first summer vacation we ever took with the boys.  And it was a doozy.  I was flat out panicked, it being our first experience with the boys ever being that dreadfully ill.

There is that awful barking cough, that if you've ever heard it?  Sounds like nothing else on earth.  It sends icicle shards of fear down every nerve fiber of a mother's being when you hear it.  It sounds BAD.  Because your kid, when you hear it?  Is struggling to breathe.

And then tonight poor Jake was really panicking himself.  Fearing that he can't breathe, sobbing and barking and making it all so worse.  Because the panic also constricts the airways.  Add in autism and his language processing disorder and calming him down is a tough, tough task.  Crap!

And at 80 pounds, it's not so easy anymore to sit on the closed toilet and hold him on my lap while the steam does its magic in the bathroom.  That was followed by holding him in my bed with the windows wide open in my bedroom (steam followed by cold air being the best way to open up the passages) chilled down to a nice 55 degrees or so with arctic blasts coming in from the river.   Whatever it takes.

Tomorrow we will go to the doctor, get Jake some prednisone so that tomorrow night we can both truly sleep. (And why, oh, why is it always the worst at night?)

But for now, I have crept away from my child-tossed, fever-sweat-soaked bed to steal a few minutes to myself, knowing that this is all I will have.

For tomorrow will also bring Jacob wanting all mommy all the time, as every ill child wants and needs to have; the full on glow of his mother's attention and tender ministrations being the comfort thing.

That and lollipops and ginger ale and (gluten-free) pretzels.  And lots of TV.

Not what I was picturing for "How I spent my winter vacation."  But somehow, for this crap year?  I shouldn't have been so surprised.

So I spend tomorrow snuggling my Jacob, curled up on the sofa watching WALL-E for the hundredth time, with non-stop Jakey commentary.  It could be worse.  Ethan could have it, too (spitting over left shoulder as I type this).

Because my lap?  While ample?  No longer big enough for two.


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The Beauty of Each, Our Every Child

There is a documentary that's gotten a lot of buzz lately called “Where's Molly?”  A recent CBS news feature on it has been making the rounds on the internet.  I am assuming that many readers who are part of the Special Needs parenting community are familiar with it.  If you're not, you can see it here.

It's the story of a man’s search for his autistic sister, who disappeared from his family when she was 2 and he was 5.  She was vanished into thin air; "sent away" never to be heard from or spoken of again.  And then, some 47 years later he began to look for her.  And he found her.

I saw that video the other day and couldn't stop crying; rivers of tears just poured down my face.  And knowing that there are so many other stories like this one?  So many children that were just thrown away like yesterday’s rubbish?  Is beyond heartbreaking.

Last month we had our first parent-teacher conference for our son Jacob (who is on the Autism Spectrum) at his wonderful new school.  It went so well, and was lovely to see how fully his teachers and support team saw Jacob's strengths as well as his deficits.

But just before the meeting, when my husband and I were having a quick coffee together, he looked up at me and asked "If Jake had been born in our time, they would have called him 'retarded' wouldn't they?" 

And I had to say "yes."  No one would have looked under the language deficit, beyond the sensory seeking behaviors and seen his intelligence and humor.

If he had been my brother instead of my son?  He might have been sent away.  How sad that makes me can't even begin to be touched.

And then, tucked away in the back of the December 5th Sunday New York Times Style Magazine, there was yet another article, an excerpt from a book written by Allen Shawn about his autistic twin sister, sent away to "camp" when they were 8 years old (my sons' age) never to return. 

Unlike Molly, she didn’t completely disappear. Her family visited, kept contact.  But still, they lived apart, in separate worlds, her home lost.

And then I have been having even darker thoughts.   Because Jake's twin brother Ethan has been doing a school unit on immigration, he had to do a lengthy report on his family history.  He was interviewing me and I told the tale of my mother's parents both coming over on boats from Eastern Europe, through Ellis Island (the classic New York Jewish immigrant story). 

My mother's father's family right off the boat.  Literally.  On Ellis Island, 1920.

As part of this, I had to answer questions about who came over and who was left behind.  And while my grandfather's whole family came over, my grandmother's whole family stayed behind; they had a business they didn’t want to leave.  She was the only one who crossed to America.  And she lived.  And they all disappeared. 

Telling this tale opened up the story of the Holocaust to Ethan, who, at 8 is starting to be able to handle some harsh truths like this.  As I was finding gentle ways to talk to him about this, I wanted to make sure he knew this was not just about the Jews - our personal part of the story, the 6 million lost - but also to include the other 5 million, the long list of those considered "other," "lesser," "unworthy to live." 

And I listed Jehovah's Witnesses, homosexuals, and Gypsies, talked about the absurdity of using skin color as a measurement of value.  And then, racking my brain to remember who else was on the list I hit the disabled including "Mental Defectives."  I was remembering they were among the first to go, near the top of Hitler's "undesirables" list.  How he had "gas vans" drive around cities picking up the mentally unfit and disposing of them immediately. 

And I nearly lost it because I realized that meant Jacob.

That would have been Jacob, had we lived there, then.

Or if that were to suddenly be replicated here, now.

(Don't be complacent and think that couldn't happen.  The German Jews thought they were essentially regular German citizens, completely assimilated into society.  All it takes is a charismatic leader with really bad ideas, good spin doctors, and a strong military to back him / her up.)

And so I struggled not to let anything show on my face as I felt the full on horror of that scenario playing out in my mind while I blithely went on, deflecting Ethan from this too soon knowledge.

Stumbling over my words: “There are others on the list, I don’t remember exactly who, but that's not important. What’s important to remember is how wrong it is to judge whole categories of people by what they are instead of by who they are, as individuals.”  

The assigning of differential values to human beings because they belong to one category or another is fundamentally wrong in my book, and I work hard to convey those values to my sons.  It was ever this way with me, but has become even more so now, as I look at Jacob through the eyes of others and see how easy it is to dismiss him, to place him in a category of "lesser."

I, like so many other Autism Moms was particularly struck by one moment in the wonderful Temple Grandin bio pic on HBO this year.  When her mother says, fiercely "Different, not less.”  

And that has become, I think, for many of us our rousing battle cry as we seek for our children all that they deserve: dignity and respect; to be included in all that they want to be included in; to be educated BEYOND the lowest rung of “appropriate” - to be educated creatively and caringly to the fullest possible extent, so that they can achieve their highest possible potential.

And to never stop searching for what that potential might be.  Even when it is hidden inside an infirm, floppy body, or tied up in knotty language that tangles with every turn inside the brain. 

As more and more of these stories of hidden away, lost children come out, as I think of the many other times and places where children like Jacob would have been thrown away, I am so thankful for the time and place he managed to be born into.

We are nowhere near where we need to be, to truly be an open-minded society that sees value in every individual.  But still, it’s the best time yet that has ever been for being born different.

The gas vans are not coming for my son.

Not today.

And I find comfort in the knowledge that all of us folks in the Special Needs parenting community around the world are striving to make a brighter future real; to help everyone, everywhere see our children as different, but not less. 

To discover and to truly value the wonders that lie within; the beauty of each, our every child.

Note: This was originally posted at Hopeful Parents, on my regular monthly day there, the 10th of December, as "Value-Able."  But I had posted it very late in the day (you can read why, here) and I have strong feelings about this post.  It's another "big one,"  full of things I'd been mulling over for a long time before they coalesced into a post.  

I almost held it back, to keep it on my own blog, but I had nothing else to put up over at Hopeful Parents.  I take my commitment to that blog and community seriously, did not want to miss my appointed time, so up it went.  But now I realize, I also want it here, back "at home" with me.  So I am re-posting it here, with a few additions and tweaks.  And choosing today, Christmas Day, to put it up? A timely reminder to value EVERY child born.



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With Heavy Heart

As I talk with my friends about their winter vacation plans and travel about the blogosphere reading people's holiday posts, it is with a heavy heart.  I am looking down the barrel of these next ten days with dread, not the warmth and anticipated snuggly joy that abounds elsewhere.

Life with Ethan and Jacob is not easy these days.  They have no relationship with each other, we do not function as a cohesive family unit much.  A moment here, a moment there, is all.  Otherwise everyone is in their own individual bubble with me running back and forth between everyone like a crazy person trying to mold some cohesion where none naturally flows.  And then the fighting, the constant fighting.

Two eight year-old boys, both lonely, under one roof together.  One unable and one unwilling to play together.  And me weeping because of this.

So these long days need to be planned and filled and turned into something other than easy and relaxed, which is what I so need right now as my body continues to twinge and whinge at me and I wait anxiously for my immanent surgery.

I need to farm Ethan out to any of his friend's families who will have him, so he can have time with friends and away from his autistic brother.  And Jacob?  Needs to be played with, entertained, challenged, have as much structure as possible imposed on these odd, structureless days.

And my heart so isn't into it.  I love my son Jacob to pieces, but it is very hard to be his mother right now.  All he wants is all my attention all the time.  And an hour playing with him leaves me drained, limp, spent and turning on the TV with deep guilt.  I know it is bad for his brain, but it makes him so happy and I need the break.

Autism is really hard on the holidays.  On vacations.  Any time that families normally come together with any sort of flow and ease, anticipating relaxed unstructured time, is, instead a time of struggle for us.  I am tense and unhappy, feel put upon and resentful.  And then I have to purge all this and put on the happy face, because my kids deserve my kinder, better self.

Every happy family I glimpse out in the world or on my computer, laughing, playing, just being together drives home to me how much we are not that family.

And this year especially, it weighs so heavily on me.  This first year without my father, my husband's mother.

And with all my gall bladder troubles and the attendant days spent in medical mishegas these past two weeks, I have had neither time nor energy to properly plan this break.  And we cannot go away, I can't risk another attack far from home.

We are set through Sunday, and then?  I will be scrambling to keep my boys anywhere near happy and entertained.

Ethan needs play-dates, Jacob needs someone to engage with him and structure to his days.  My husband needs to finish the sad task of clearing out his mother's apartment, the one she had lived in for his entire life.

And me?  I need some time for me, to rest and to build up my reserves to be ready for my coming surgery.  I also need some happy, relaxing family time.  And I will be getting neither.

There will be a moment here.  A moment there.

And that will have to do.  It will do.


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Wordless Wednesday (now with more words)

I was going to skip Wordless Wednesday today because I feel like talking, but I've got a few readers that would disappoint (and I'd hate to do that).  So this post is going to be a double header.

First: a few cute pictures of my family.  And then?  Some chatter because my brain is all a-clatter.  And me?  I like to share the noise.

It's the second day of winter.  Let's take a walk down memory lane today to winters past...

Here's one from 2004:

Jakey and Me, February 2004 (when my hair was still blonde-ish)

Snowy day, December 2005: 

Time to get 3 year-old twins into bundled into snowsuits?  Half hour.

Maximum time 3 year-olds will spend out sledding?  15 minutes.

How about these from New Year's Eve, 2008?   We had been up in Great Barrington and were supposed to return to the city that day, but got socked in by a blizzard.  So we played in the snow for hours.  Yipeee!

That was a lot of snow!

What could be better than a toboggan pulled by Dad?

Snowy Jacob

Snowy Ethan

Looking at these pictures is making me long for snow.  So far this winter: bitter cold aplenty, but no snow.  Sigh.

And now, for part 2 -- those pesky words:

I'm actually feeling human today.  Today, for the first time in nearly two weeks I woke up without feeling like I was something scraped off the bottom of a shoe.

I forgot how reductive pain is, how it strips the layers of the self away.   I have been hunkered down in survival mode for so long, I was shocked by clarity and lightness.

It made me see how I have been not thinking for days.  When you are deep in the brain fog you can't see it, it just feels like atmosphere.  It's only when it lifts that I understand how limited of vision, short-sighted as well as short-tempered I have been of late.  I know I've been less than 100% present, but how much less was not clear until today; today when I am at least somewhat myself.

My beast-brain had been at the forefront, large and in charge; now somewhat quelled.  My executive functioning is up and running (as much as it ever is in this ADD brain of mine, that is) my frontal lobes asserting themselves once more.

I felt like throwing myself a welcome home party.  I've missed me, truly.  But I so didn't have time for that.  I had so much that needed to get done, that I had not just left un-done but hadn't even realized was sliding off the plate.  Especially: arrangements for my post-surgery recovery, which surely involve other people tending to my children for a few days.

Yesterday I slept all day.  Really... ALL. DAY.

I made it to Ethan's class publishing party at his school, got the car re-parked (NYC alternate parking, it was on the wrong side) then came home and collapsed.   Set the alarm for 3:55... five minutes before Jake's bus wait-time begins and thanked the gods that someone else was picking up Ethan to take him to Hebrew School.  Then?  Sleep.

My husband and I have a running joke...  I say: "I'm so tired I could sleep for a week."

He says: "Honey, that's called a coma."

I pretend to consider the consequences, then conclude: "That's OK, I'll take it."

Only yesterday?  It wasn't so funny.  I really did feel that I was nanometers away from not being able to wake.

If you could call the zombie-like state in which I have been carrying out my minimalist functioning  "awake."  It's a miracle that I have been able to execute the bare minimum required of competent parenting (kids are taken to school and picked up, fed, clean, homework done and in bed before midnight - CHECK!)

So you can imagine how happy I was today to be able to think, to function like a normal human being (well, my usual crude imitation of one, anyway).

And all this makes me think of Jake, and wondering how his level of internal distraction and discomfort is contributing to his sometime foggy state.   When he's so busy trying to get enough input to make sense of his senses, there's no room in his brain for the other good stuff.

He clearly has attention issues, but they're not of the ADD variety.  We've tried ADD meds; they do nothing for him, just make him highly cranky and even more distracted (if that's possible) and who needs that?  His attention issues are puzzling and seeing how distracted and completely unable to think I've been these past two weeks gets my brain a-humming (now that it's finally awake).

Anyway, I don't have any answers to this, no conclusions drawn.  Just musings and questions, lines of inquiry worth chasing down a bit, sometime.  When I have some spare time.  (Don't all fall off your chairs laughing now.)

And now my energy is flagging, and the sofa so inviting.  My spurt of productivity of has sputtered out; time for rest and renewal.  If I am going to retain my human form tomorrow?  I must now put down the mouse, step away from the keyboard.

Goodnight, my friends, goodnight. 

I’m linking up to Wordless Wednesday at Angry Julie Monday.

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