Category Archives: NaBloPoMo

All was Right

It is the last “Monday” of the month, and I am joining Lori at Write Mind Open Heart to reflect and share on what is right, maybe even perfect in our world for a moment in time.

No………….it is NOT a typo, you read correctly, it is called Perfect Moment Monday.  Yes……………..I know it is TUESDAY butthought about my perfect moment on Monday………………..if that counts?  However, life got a little in the way on Monday and now, here I am, writing from my own personal time machine.  So, Dear Reader, please humor me and play along.  Please and thank you!

As has been said, “The best things in life aren’t things at all.”  They can’t be bought, wrapped and put under a tree.  At times they appear in what you believe to be the mundane of your life.  Not at all in those moments marketed to be perfect.

Case in point, the child, who shall remain nameless, that looks at disappointment at his gifts on Christmas Morning when he realizes you really meant he was getting that rated M for mature game.   I had already sent my own letter to Santa, was my reply.  Sad child, frustrated parent, not so perfect.

I did not have high expectations of Thanksgiving either.  When you have lost a family member, no matter the age, you struggle through the day to not be filled with grief and longing for your loved one.  This was especially tough since our Precious Madeline’s anniversary is in November and we were struggling so with this 2 year milestone.

However, for her Brothers, we knew we must pull something together and present the makings of a holiday.  Possibly complete with a new tradition.  Shake it up a bit and give all of us something to anticipate.  Something with potential for fun.  So that’s what we did.  With “four” boys in our home who love history, we headed to Gettysburg the day after Thanksgiving.  Excitement abounded……………for The Brothers, as we were going to stay in a hotel WITH a pool.  Not something we do much of so they were pretty happy.

Of course, hotel life and all looks good……………….. on paper.  Actually having The Brothers together in confining quarters is a different story.  Paper………………. not as pretty.  We did get a little front room with a pull out sleeper and t.v., etc.  Best idea Captain Daddy ever had.  Despite our suite,  after the car drive and some museum time, The Brothers weren’t really feeling “Brotherly Love.”  If my ears didn’t deceive me disparaging remarks were flying under their breaths.

Particularly difficult is managing some of Johnny’s autistic behaviors on the road.  Being away can stir up a great deal of anxiety.  And Brother being “good” brothers…………….they don’t always display much sympathy and there is a lot of OMG STOP IT, JUST STOP IT.  (By all concerned)

So where, you may be thinkingwas there any perfect moments in THIS SCENARIO.  Like I said before…………….it came out of nowhere, when I was expecting the fists to start flying I discovered this……………….

Things got quiet, so I walked into the suite (cracks me up to call it that) to see if they had left and what to my astonished eyes did I see?  The Big Brother and Johnny, the MOST unlikely pair, lying side by side on the bed, with their legs touching…..yes, touching………….. and then I noticed their hands.  Their hands were pressed together in that way of comparing and then it happened, their fingers locked together.  What an absolute perfect sight for my sad eyes.  My heart filled to see Big Brother and Johnny sharing this time, albeit brief, when they were at peace and all was right in our little life for that Perfect Moment.

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Gilded Tears

Gilded View

Fall.  Such a beautiful time of year.  I love the crispness in the air.  The breathtaking colors of the leaves.  The warm glow of the autumn sky.  For so long these images of fall took me straight back to high school and memories of shlepping along with the band and football games.

That memory has been replaced.  Now that crisp air and breathtaking colors conjure a much different memory.  One of fear, hope, hospitals and grief.

It was a beautiful November day when I first learned we were going to be blessed with our Fourth child.  Initially we were overwhelmed.    Four children and I hadn’t been in the baby business in 6 years. A surprise blessing you could say. 

Another beautiful November …………..one year later…………..our Beautiful Madeline was here.  Four months and four surgeries.  Finally she was home, we were beyond thrilled.  In the blink of an eye our thrill turned to fear.  With one turn of my back I heard her gasping for air and turned to see her sweet face struggling and blue.  In a blur, 911 was called.  She was rushed to the ER, then promptly to the OR.  Doctors took turns holding the tiniest of tubes to keep her airway from completely closing.  By nothing short of a miracle, a tracheostomy was successfully done, a mere 5 weeks after open heart surgery.  I was numb with fear ……hope and……………unconditional love.

For the remainder of that beautiful fall, I watched the leaves and sky turn golden from the side of a hospital crib.  I could not feel the warmth of the crisp air.  My senses were overwhelmed by the continous beeping of monitors.  My eyes not able to take in the beauty of the foliage for they were fixated on the numbers the monitors were screaming.  Fight songs playing through my head were replaced with pleading prayers for healing

From this hospital room, I  watched the tree grow bare and then droop with snow.  Finally………………. a December morning and with a staff of home nurses Madeline came home……………….we were again, beyond thrilled.  Again, our thrill turned to fear when two weeks later she began vomiting.  A routine follow up became a night in the ICU and more surgery.  Pleading prayers for healing turned to begging God for mercy and strength.

It was Baby Girls First Thanksgiving and Christmas and her stocking was to be hung on her hospital crib decorated with Red Velvet bows.   Madeline rang in the New Year in a Pediatric Rehabilitation Hospital.  Again……… we pleaded God for strength to bring her home.

God heard our prayers…………….our Little Irish Lass amazed us all and finally came home.

Winter turned to Spring and much to our  delight she was with us to done her Easter finery and stare in wonder at the brightly colored easter eggs.  We had gotten over the hump, we just knew it.

Spring to summer…………..many doctors appointment, several near misses………. but she was home.  Baby Girl was a fighter, one tough cookie!  Feisty, you could say.

Imagine our euphoric delight on July 4th.  We had made it!  One Year!!!  Red velvet cupcakes and sparklers all around.  We even got to go to the beach……………Baby Girl got to her dip her toes in the ocean and frolic in the sand.

Roller coaster.  Death defying roller coaster ride………………a concise description of the year of emotions.   But hey, we were taking that last smooth turn for all it was worth.

Summer turned to fall……………..and preparations began for diving into the beautiful fall, renewing our senses with that crisp air and golden sky and rejoicing in our life……………..away from hospitals.  October was pumpkin patches and Halloween costumes.  Our Madeline was a perfectly adorable Bumble Bee.  She stared in amazement at the festive activity and barrage of pictures.  Pinch me………………I was dreaming……………..bring on the Holiday fun.

beautiful November morning, Madeline lets out a scream……………….911 is called……………..here we go again.  Our joy now turns to horror…………….absolute horror.   Pinch me……………………I must be dreaming…………………. a NIGHTMARE!!!  Again………….we pray…………our pleading prayers………….turn to begging……… to hysteria.  Our tears flow and  wrap our body in a pain so raw you can’t believe this is real.  On this November morning, with a  clear blue sky, Our Sweet Madeline took her last breath.  Again I prayed……………….Please God, this can’t be real…………….it was.  It must be a nightmare………………..no……………. it’s your new life.

A week later on a beautiful November morning, with golden leaves and clear blue sky…………….Our Sweet Madeline was laid to rest.  My new fall memory…………………her brothers, wearing blue blazers and white gloves, carrying her tiny casket up to her burial site.  She was laid to rest under a tree, ripe with fall foliage, under a warm autumn sky.

Two years have now passed……………………slow and full of pain.  A golden, warm fall day.  Beautiful and painful.  Trees heavy with golden leaves in a gilded sky.  I  pray for strength………for me……….to find a new way and for healing…………..for our broken hearts.  I still plead and pray……….Dear God, keep my Baby Girl in your care, safe in your heavenly arms…………….until she can be in mine…….on a beautiful November morning, in a warm gilded sky.

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Doing Time

I have a guilty pleasure.  Don’t we all……………..right?  A select few know of mine………… but now I guess I have selected for you, Dear Reader, to be in the know.  In moments, days and hours of sadness,  feelings of hopelessness and in the trenches of grief, I grab my beverage of choice, curl up in my bed, pray for the world to pass me by and turn on the obvious mood lifter……………………..PRISON SHOWS.

I can watch these shows for hours.  I have seen so many that, sadly, some are re-runs to me.  Why???……………….weeelllll, I have NO IDEA.  While I am viewing I consider why am I watching the devil incarnate, on my television, telling, sometimes with pride, their horrendous crimes.  Often accompanied by the hard luck story.

Do I relate to these men and women……………NO!  I barely walk against the don’t walk sign.  Cautionary tales, perhaps?…………. No.  Did I miss my calling as a Prison Warden…………could be.  Am I crazy?  Yet to be determined.  

Anywhoooo…………..my point?  Well, the last two years, without our Madeline, have been unbearable.  There are days  you do not know how you got through the last hour, let alone how you will get through your day.  Grief, at times, can confine you.  Your confinement is the equivalent of doing hard time.  On bad days you won’t even go out on the yard.   Just the day-to-day activities can be a ball and chain.  Grief has you trapped and you see no way out!

You scream on the inside………….WRONGLY CONVICTED!!!!  What did I do to deserve this sentence?  I followed the rules.  I’m a “good” person.

Sadly when you receive this sentence there is no “Appeal Process,  no bail, no parole, no credit for good behavior………………….. not even a work release program.  All you have is time.  And you have no choice but “to do” your time.  Time that must be “done” while serving your maximum sentence…………………….life without your precious child.  No time off for good behavior……………….

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A Matter of Taste

Johnny sensed that possibly I was getting a little too comfortable being his Mom.  He must miss those early days of meeting all those nice security guards and other complete, random strangers.  Those were the days when autism kicked me in the pants on a daily basis.

Back in the day after meeting all these nice security type people and other helpful citizens, I would feel the need to explain to my new acquatinces how it is that my child escaped from the secure children’s play area in the mall,  rode the escalator to target, and was now sitting contently playing in the toy aisle.  Better yet, why it was that he was licking the swingset on the playground and drinking water out of the bathroom sink (yes, disgusting, I know) at the ballfield.

Not wanting to give the wrong impression, I would stare into their horror-sticken faces and go into great detail how my little boy had autism, that is why……………that is why,  it brought me to tears……… the comments……………the looks.  Because when your child is the one taste-testing the playground equipment and facilities, it is always helpful to have a well-meaning citizen inform me that I “really shouldn’t let him do that.”  REALLY??  Thanks for the tip!  I felt the need to let them know because I couldn’t, after all,  have these complete strangers thinking I was a bad parent.

After several years of that routine, I was plum wore out.  One from chasing Johnny all over these parks and ballfields (cause that boy is quick) and two, weellll…………….all that explaining to strangers was flat out EXHAUSTING.  I was never going to see those people again……………….I’m smarter than that………………..I would just switch parks.  That………..and I developed a new motto.  Upon releasing Johnny from his snack bar, aka, the swingset, I would gather The Brothers, announce our work here was done and simply………leave.  Head held high, dignity……………weelllll, as intact as possible.  He was licking the swingset afterall.

My point……….I thought those days were behind us, but apparently NOT!  Alas, just last week, at The Brother’s School, Johnny must have thought that the wooden block, used as a doorstop, looked pretty tasty, because there he was…………yes…………………licking it.

And this time no tears, (I have much more to cry about)…………….I looked at my friend, who clearly saw him snacking, smiled, shrugged my shoulders and said, “Wow, what progress, I don’t even feel like crying.”

So, thank you, Johnny, for being you.  For not letting me get too comfortable, for your daily insights, and for keeping me open to the many possibilities of life………………..like maybe if you do stand in front of two fans with your Batman Cape, you can fly………….and maybe, just maybe…………a doorstop does taste pretty good after a long, hard dayno explanation required………………

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That’s the Facts

“There’s a time you got to go and show 
You’re growin’ now you know about 
The Facts of Life, the Facts of Life. 

When the world never seems 
to be livin up to your dreams 
And suddenly you’re finding out 
the Facts of Life are all about you, you. “

source: http://www.lyricsondemand.com/

I feel the need to follow-up on what I will now refer to as “The pants incident.”  Dear reader,  if you are lost please refer to my previous post, entitled, most appropriately, “Keep your pants on……literally.”

So………………this morning I send Johnny off to school feeling pretty confident that all pants will remain in their proper position.  One, because The Captain and I gave extensive speeches last night on keeping your privates, well, private.  I thought we did some pretty darn good parenting.  However, I have to humbly admit that what Johnny probably heard was much like Charlie Brown  when he was lectured.  So……let’s just say what his primary motivation for proper pants placement…………..you guessed it……………the stop in your tracks fear of spending the rest of the school year sentenced to the daily wearing of church pants.  Yep, I believe that little behavior modification was the supreme motivator.  Mom and Dad can go away for the school day………church pants………not so much.

Johnny kept this information fresh in his mind.  Yeeeeaaaaah, Mom…………………only one glitch……………I seem to have missed a very important notice that came home from school.  The one informing me that beginning TODAY, Johnny’s class would begin discussing………….say it isn’t so……………….. THE FACTS OF LIFE!!! (que music).

Yes, he is at that age……..much to my chagrin,  and as much as I prefer to……………I know I must keep my head out of the sand and Mom up.  Oh……….and pay better attention to the papers coming home.

I got to school to pick him up…………….he was standing at the door with his teacher…………not a good sign……ever!  Guess the “Facts of Life” was about as big a hit as algebra.  My Johnny is a literal man.  You do not tell him one day to keep it all private and then the next expect him to remain calm when what he is to keep covered is now PLASTERED ALL OVER A POWER POINT.  From all reports not a pretty scene.  Can you blame him?  Guess it’s hard for all to focus when Johnny is bellowing what all the other boys are  thinking, “GET ME OUT OF HERE, I DON’T LIKE THIS, I’M UNCOMFORTABLE.”  

Teacher’s suggestion……………..modified Facts of Life………….wonder what that leaves out.

Walking to the car…………..Johnny trailing behind pleading, “I can’t take that class, I can’t talk about puberty, I’M NOT EVEN A TEENAGER!!!  Good point, Johnny, Good point…………………now, let’s go find some sand………….. I feel the need to bury my head.

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Keep your pants on…LITERALLY

Mommy’s Brave Face

Today I will be writing under the heading, “Never a dull moment” or better………… perhaps…………….., “The Once Again Futile Attempt to fly under the proverbial radar.”  Yeeeepppp……………………..I think that sums it up.  But Blessed are the Brief, so I will sum it up like this………………DRINK PLEASE!!

I get it, I know…………..Life is not easy and No One ever said it was, Life is not fair either and yeah, yeah………..I know…………..Sweet Darlin, no one ever promised you a rose garden.  I think roses aren’t actually necessary,  and at this point I would settle for some garden variety marigolds or even some of those pretty little white “flowers” we used to make “necklaces” out of when we were little.  But I digress…………………..

Anywhooo………………… with all of this knowledge of  ease and fairness, I ask you Dear Reader…………………can’t some things be easy, even a given……….like getting your kids to do the basics…………………you know, homework, brush their teeth, KEEP THEIR PANTS ON AT SCHOOL!!!!!!!

As I have said before, Johnny has been in school for a LOOOONNNNG time.  About 8 years now.  I like to think we got this down.  We know the ropes, when I tell him, “have a good day”, I suppose I should not have neglected to mention……………….AND KEEP YOUR PANTS PROPERLY FASTENED AROUND YOUR WAIST!!!!!!!!!!!  If you have a child that instinctively does this……………..GOD BLESS YOU, cause if you, like me, can’t always take the basics for granted, you are either laughing at me or crying with me, cause you know of the fun I speak.  I have said it before, I say it again………….Autism is the gift that keeps giving………one surprise after another.  It is not for the faint of heart, that is for sure, no matter your place on the spectrum.

What behavior modification technique did I utilize to reinforce the desired behavior.  Weeellllll, I dug deep into my vast wealth of behavior modification and came up with the following pearls of behavior wisdom……………………”JOHNNY! if you do that again in school you will have to wear church clothes with buttons, hooks and belts EVERY DAY!!!”

Yep, I did it, I went with scare tactics.  Sometimes operating on fear gets sold short.

Johnny’s response – Got it.

Me – Good.  And like I never met Johnny before……………… I just had to do it, ask that one question that I know better than asking………………..why Johnny?

Johnny – Cause my brain sometimes tells me to do dumb things……….(he looks at my glaring face, recalls the closet full of khaki pants and belts and re-considers)………….but I think now my mind just told my brain that we have learned our lesson.  Good Team Work, Johnny, Good Team Work.

Now Johnny, do Mommy a favor………………have your mind tell your brain to give your Mommy a break…………. or a drink…………all under the radar, of course.

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Gate of Faith

Home

There is no good or easy way to tell your child about death, especially the death of their Baby Sister.  Much time is put into teaching them to pray, not preparing for death.  “Pray for our Sweet Madeline and for her Doctors and Nurses to take good care of her, so she can come home soon.”  We recited a version of this simple yet pleading prayer for 16 months.

Left with no words when our prayers were not answered in a way we can possibly ever fully grasp,  we simply said, “God called Madeline home.”  “She is an Angel now with God, her cousins and Grandma and Grandpa’s.”  

As I have not found even this knowledge to be adequately comforting, I often wondered what The Brothers were thinking.  Big Brother is pretty firm in his faith for a little/big guy.  He told me with awe, “Mom, she’s like a Saint now!”  Johnny, so literal, simply said through tears, “she was so beautiful and now she is gone.”

The Little Brother, maybe was the most like me…………… he simply didn’t seem able to take it.  Once all the “doing” was over for her funeral and he was sent back to his “normal” day-to-day routine, you could say the bottom fell out.  He to did not know what to do with this knowledge.  Knowledge that his Baby Sister he and everyone prayed so hard for, was gone……………..she was now in this place called Heaven and it was supposed to bring peace and comfort.  Yet, all around him was great sadness.  His response to his great sadness………………..retreat………..retreat under the desk, in the closet, under the Christmas tree and in the bathroom.  And we didn’t know what he was thinking because he refused to discuss.  However, as they say, actions can speak louder than words so we concluded he was simply as broken and confused as anyone.

Thank to selfless, dedicated teachers going way beyond the scope of their job descriptions, Little Brother began to retreat a little less, and less.  He began to talk just a little but just enough.  One day, his teacher told me to check his folder.  He had written a poem.  I was a little nervous as to what he might write.  I was thinking his favorite (potty humor) or something angry.  I thought…………wrong.  The Little Brother had possibly been sold short.  He hadn’t been shut down as much as possibly he was giving this place Heaven a great deal of thought.  And while under those desks he had been painting this comforting picture………………..

GATE OF FAITH

Just at the gate

Is where you’ll find your fate.

As you see in the bright night

Just coming through

Just follow me and the moon rises

Just come with me

I’ll do as you wish

By the river full of fish

As I lead the way

To the gate of your faith,

Just as we pass trees in peace,

As long as you stay with me

You’ll never be lost,

As the owl flies up in the night sky

You’ll always have your way with me

Just follow me

The gate of your faith

It’s just so hard

To resist the feeling.

(The Little Brother, 2nd grade)

So…………..I wonder, is this what Baby Girl  heard when God Called Her Home?

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Fuzzy Math

Fuzzy Math…………. yeah that’s what it is

Thirty days have September, April, June and November.  Or something like that.  My confidence in my basics has been shaken.  I feel like going back to the doors of ol Cookson Elementary and demanding to speak to whoever deemed me proficient and punched my exit ticket.  Thus leading to about ten additional years of academia delusions.

You know…………the years when I would boast of all my success.  I was all like listen to me…………….I can add……………1+1 is 3, 2+2 is 5.  After that, I would really pull out the stops……………….Oh yeah, I can count………wait………….I can count to.  And when it came time to find x, I didn’t leave a stone unturned.  I knocked on every door to find that little bugger.  Turns out, x was off with y somewhere looking for an angle or something.  I never got the chance to shock the masses with these academic gifts.   Being so in awe of my math facts they left, possibly to go home and ponder the wonder of my abilities.

Weeeellllllllllll, at least that is what I am beginning to think happened…….

Dear reader, this, in fact, is what I must confess……….I failed to do “the math.”   Here I was tooting my horn, waving my blogging flag.  Believing this could be my moment, my month.   The month I amass “potentially” thousands of new readers.  You know how?  Well, like I have been saying all month………….”I am participating in NaBloPoMo, an event on Blogher in which I write THIRTY Posts in THIRTY DAYS!!!!”  Great idea, I’m in, what an AMAZING opportunity………………am I right?

I wasn’t too worried about this committment…………cause weekend were for FREE WRITING.  You know, I thought, I could really use those two days off to re-fresh my brain, renew my creativity, work on other projects……………….laundry perhaps.

So, off I go, writing like Hemingway.  Conquering the world of blogging, amassing readers by the day.  Then I notice something kind of funny……………the fine print.  Turns out it wasn’t weekends WRITING FREE……..DUUHHHHHHHHHH……………….FREE WRITING……………pick my topic (not my nose) that kind of thing.

I did think it was kind of funny.  Posting Day 20 with only a few days left in October.  But…………hey……………..I’ll just chalk it up to fuzzy math.  That’s my story and I’m sticking to it.

And now, for my public plea……………….might be in need of a math tutor…………for The Brothers, of course.

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Boo to you!

Ahhhhhh……………….two days off from school for The Brothers.  Yiipppeeeee, no alarm clocks, packing lunches or homework drills.  Peaceful and relaxing?  UUUUHHHHH………………NO!  Why?  Hurricane Central.

Despite the weather, today I am contemplating if “I like to be scared?”  Not particularly………..NO!!!  After facing every parents WORST FEAR, I am not able to find the fun in being frightened.  Party, pooper………….perhaps.  Maybe not forever…………but for now.

I believe question is referring to HALLOWEEN fright night kind of scared but my focus has been shifted.

Halloween or Hurricane.  High winds, high diving boards, roller coasters, rolling tides………………..OH MY!!!  Not a fan.  I don’t know if it is so much FEAR rather FEARS partner in crime………………….ANXIETY.  I doubt I have had the chance to decide what my fears might be……….weeelllll………………..cause the thought of my fear makes me so anxious I become a wreck in the form of humming-bird on edge or cat on a hot tin roof.

My specialty seems to be things I have absolutely little to no control over.  Today I don’t think my anxiety has as much to do with a Hurricane as being trapped in a house with The Brothers during a Hurricane.  “When’s it coming, Mommy, are we still having Halloween………can I play on the computer? Can I have a snack?  What’s for dinner? Can we go to the costume store? When can I get a toy?  and so on………..and so on………….get the point?  Just reading this I’m feeling jumpy.

My relief………………running shoes.  Pounding the pavement to get the blood pumping, clear the mind, regulate my self-perpetuated craziness, organize my worries, and give my anxiety a MINI-holiday, if you will.  A win, win for all concerned.   Except, of course, today.  BECAUSE ……………..as my Johnny pointed out, “uuuhhh, Mommy, it is not a good idea to go running in a Hurricane.”  Smart Boy, that Johnny.

Sooooooooooo………….not wanting to ruin my new Nikes, nor strut my stuff in a wet suit, my hand has been forced.  I have been left no choice……………………………….weakness or weathering the storm?  YOU be the judge………..

Take that NIKE!!!

Brownies and elastic…………………..please and thank you!

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Trick or Treat?

Trick or treat………..smell my feet?  Question of the day………………..better question………………..carve a pumpkin OR build an ark?  What on earth am I pondering today?  “What is the best Halloween trick you have ever pulled?”

Weellll, my answer is somewhat pathetic.  Perhaps a little goody two shoes….buutttt, I can honestly say, with some remorse, that I don’t recall ever pulling one.  Dear Ol Dad didn’t go for that stuff, and being the rule follower I am, I didn’t like to go against, what he didn’t go for.  Plus, I wasn’t allowed out to randomly roam at night.

Possibly the only trick I have pulled at Halloween is to eat my Boys candy (hey………don’t judge……….you know you would do it to).  Or send it in to work with The Captain and tell them they must’ve eaten more than they remember.  I think these aren’t really tricks as much as a parenting right of passage.

Anywhoooo…………….my point………………I’m innocent.  How am I to be rewarded?  HURRICANE SANDY!!   Yes, I just did the higher math and realized the DC area is about to get hit right about the time, my Little Goblin, Johnny has planned to don his much anticipated Optimus Prime (3D) costume and hit the neighborhood.  For a boy that does not eat candy, he begins planning for this night about November.

Johnny was just appalled when he saw Santa Claus decorations.  He informed me the Grim Reaper isn’t going to like Santa.  In his literal world you do not mess with routine.   You don’t NOT have pancakes on Saturday, you don’t go to church on Saturday, you NEVER sleep past 6 a.m. and you MOST DEFINITLY do not rain out HALLOWEEN!

So……………….you think Hurricane Sandy is going to be ugly……………..weeelllll, just wait till SHE meets HURRICANE JOHNNY.  Take THAT Sandy…………………oh yeah and………………..Trick or Treat!

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