Tag Archives: writing

Friday Fun – That’s Entertainment

Not to date myself, but what is that Loverboy use to sing about?  Everybody’s Working for the Weekend?  Yeah, that’s the one.  Get everybody all pumped and ready to rock.  Uuuhhh, I DO NOT talk like this, EVER, but seems like the right attitude for some much-needed Friday Fun!  Plus it makes me sound kind of “hip”.  Alas, I know that not to be true as my Dear Niece was kind enough to point out…the quickest way to know you ARE NOT “hip” is to, in fact, use the word, “hip.”  And since all of the “Adults” I keep company with also spend their days with 5 to 13 year olds, taking groups of 30 parochial school children to Stations of the Cross, we might be working at a “hipster” deficit.  Plus a few such friends were last seen wearing Dr. Seuss hats in honor of the Beloved Author’s birthday, so we  got that going for us…

But the week got off to a Rockin start.  There I was, my head soaring in the clouds, still not down from the excitement of being cast in the 2013 DC – Listen to Your Mother show.  Thinking, THIS IS IT!!  Things are coming around, I can’t believe my luck.  Gonna start a whole new lifestyle, you know red carpets, paparrazi…restaurants that take reservations.  I got so full of this idea I even had a photographer take my picture.  Well, actually, I had to send one in for the “show”and when you are a Mom, you don’t ever really have a picture of yourself.  At least one that won’t scare the general population.

But my point, I actually had somewhat of a photo session.  Yep, fancy lighting, flashing the pearly whites, striking a pose.  Definitely, a new beginning…

AND THEN…IT HAPPENED…REALITY…CRASHING DOWN.

Because just as soon as I finished striking a pose, I had to hurry, put on my practical corduroy’s, and hull myself over to “the school” to do some emergency substitute “teaching” in Kindergarten.  Nothing brings you down to reality faster than getting 30 five-year olds to the bathroom, hands washed, divided into 2 groups, art bags in hand, to go to “art” and “computer.”  Followed by teaching the “horrors” of not taking care on one’s teeth.  Really, it’s a priceless experience.  Especially when you are privy to such tidbits as “Little Billy” telling me he had just had his “privates x-rayed” at the Doctor, and “everything was OK, good job!”  The only thing better was hearing him repeat this to every other adult in the school.  That, Dear Readers is entertainment you can’t get just anywhere.  So, I best not disclose the location, or you will all be beatin down the door, trying to steal my job.  You know you want to.

That fun is only followed by the “how many kids can you fit in an Expedition” game.  At least I had all the “right” kids this time…take note…make sure you have the “right” kids in your car…don’t ask, just trust me on that. “How did a nail get in the tire?” of said Expedition, not such a fun game,   Would have filled you in earlier in the week but had  received a series of e-mails from “The Teacher” that the “The Little Brother” was melting down like a block of ice on a hot summer day at school.  Last seen sobbing his way into  Spanish.  Wonder if Kelly Rippa has days like this?

But it gets more real…the real low light..BANNED… from a 7th grade school function.  Yep, you read correctly, The Big Brother did not want the honor of my presence at the Science Fair.  Turns out I make him nervous.  I respected his wishes and slid in the back door.  Hey, I’m not missing this, I laid low…the Nikon hanging around my neck wasn’t too obvious.  And I never yelled, THAT’S MY BABY BOY…not once.  So, yay me!

To round out my week, I spent Dr. Seuss’s birthday in 3rd grade.  No birthday cake,  to be had, bummer.  But I learned a couple of lessons.  First, NEVER let the last kid in line close the door before you check the lock, cause it is zero fun to be locked out of a room with 30 kids.  And Second, never question why Little Bobby was chasing Little Suzie across the room while throwing her folder…cause you just might start to follow the logic…and that would be frightening.  So carry on, Little Bobby…I saw nothin.

In the meantime, while Little Bobby and Suzie are going about their business, let’s get to the point.  Friday Fun  with Hilary at Feeling Beachie.  Thanks for hosting, Hilary.  I’ll make sure Bobby and Suzy don’t throw things at this here party!

Here is what the party people are wanting to know!

This week’s statements:
1. Sometimes I ___ I am ___
2. When I wear ___ I feel ____
3. When in doubt, _____________
4. The easiest way to ______________ is to ___________.

My answers to the party people:

1.  Sometimes I am shocked to look up and find that I am NOT being followed by candid camera. (yeah, that dates me!)

2.  When I wear practical corduroy I feel sure that modeling contract is pretty much NEVER going to happen.

3.  When in doubt, wear corduroy.

4.  The easiest way to get your head out of the clouds is to have reality hit you on top of it.

Besides, who needs Red Carpets when you got Substitute Teaching…Now THAT’S Entertainment, right there!  Happy Friday…Have a drink on me and may your corduroy be snappy and shoes not too sensible.

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Perfect Moment – No whiners or quitters

Perfect Moment Monday with Lori at LavenderLuz.  A time to reflect on the crazy, chaotic and possibly disappointing times of the past month and realize the one moment when all was right in your world.

I started blogging not quite two years ago.  The result of not so gentle nudging by dear friends who insisted, after hearing the tales of my daily chaos, that I needed to start a blog.  A what?  I didn’t know much about blogs let alone writing my own.

Trust me, they said, this is good stuff.  You have funny kids and a compelling story.  If you write, they will read.  “You think so?”  “Yes, I know so,” was her response.  And with that I jumped into the deep end, with no life jacket and began to doggy paddle upstream through the blogosphere.

On a not particular schedule I began blogging away about Johnny, his brothers, and our Madeline.  Much to my surprise, it began to take on a little life of its own.  “Hey!” this blogging thing is kind of fun, I thought.  So, I blogged on.

I was holding up my end of the bargain by writing but the readers must have lost the memo on their end, because, well, the readers, they were playing hard to get.  That term “viral”, yeah, you know the one…has not happened.  No one has died of the funny and had to tell millions of their “friends” about what is happening with Johnnypsmom at Life According to John.

Offers to publish Johnny’s wit and wisdom, have not been rolling in.  But that’s okay because he has his own little cult following that he doesn’t even know or care about for that matter.

For the most part I have just continued to entertain myself, if no one else.  And if I questioned my own motives or direction I could hear my Dad’s voice in my head echoing the words I heard for 40 plus years, “I did not raise a whiner, quitter or complainer, so on I blogged.

 Then I got braver and hooked up with a few blog hops and even made blogger friends.  “What’s the secret?”  I would ask.  “There is no secret, just keep writing.”  Don’t give up, just keep writing.  Eventually opportunities will come your way.  For me?  I really began to question this line of thinking as I dove further over my head into the blogosphere.

Then one day I got really, really Brave and BOLD, and with additional cheerleading from Kathy  at  Bereaved and Blessed and others, I took a piece I wrote, made 4 copies and took myself over to parts unknown, Virginia to audition for the 2013 Listen to Your Mother-DC  show.  With a deer in the headlights look about me and fueled by anxiety,  I proceeded to read for a coveted part in the 12 person cast.

After a nerve-wracking twelve days of waiting , I had my perfect moment, one of a lifetime: 

Announcing the 2013 LTYM DC Cast!  And there was my name, on the list!  I am honored and thrilled to be a part of this show.  To have my voice be heard.

I guess my friend was right, after all, write it and the readers will read.  And, of course, Dad was right..”Don’t quit, Ames.”  “Nothing will happen if you quit.”

So, here I am, a non-quitter who wrote.   Dear readers I hope to see all 10 of you on April 28, 2013, to hear my voice and all 12 voices as we give a shout out to Motherhood!  Never know, could end up being your perfect moment to.

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We all Scream for Ice Cream

When Johnny was about three or four I took he and Little Brother to a high school production of a musical featuring Disney songs and characters.  All the greats were there, Mickey, Minnie, Ariel, Nemo, Simba.  I was prepared for a morning of dancing in our seats and little boys with big smiley faces.

THAT is not what happened.

I believe it ended up being my first lesson in “be prepared” for ANYTHING… all the time.   Because there was only one smiling face that morning, Little Brother.  Johnny, well, it was hard to get a good look at his face due to his screams of terror, his thrashing in his seat and his attempts to escape.  So, I chased him up and down much to the audience’s delight and tried to engage him in the show.  NOTHING DOING!  This was HELL and he wanted out, NOW!

That morning ended with me pacing the first of many lobbies to contain Johnny.  Little Brother watched the show in another Mom’s lap.  It might have been the first, but it was certainly not the last time this scenario played out.

Johnny was already in a Special Education pre-school class for “developmental delays” but this added to my ever-growing concern that there was more to the story.  Outings of any kind were a crap shoot.  You never knew which environment he would enjoy and which would cause him to scream bloody murder in a panic like state.

What was going on?  Too much!  That’s what was going on.  Too many people, too dark, too loud, too bright, too much music, too much clapping, too much surround sound.

The scary part, when put in these situations, he would just run, out the door, with no concern of knowing where he was or anyone around him.  He just wanted out.  So he would run and then find a place to hide.  If it was a “familiar” place, I would at least have a peace of mind to know his “go to” places.  But unfamiliar places were a nightmare.  One minute he was there, the next minute…gone.  One time we were at a tailgate party and finally found him hiding in a port a potty.  THAT’S  how much he hated crowds and noise. Those drinkers waiting in line looovvved him.  That’s okay, they weren’t the first or last to give me the you suck as a parent stare.

It seems only logical that knowing this about him, we would keep him away from any and all crowds.  Problem is, that’s extremely isolating and I thought would only eventually worsen the problem.  But the biggest reason is I wanted so badly for us to be able to do “normal” things as a family, altogether.   But ever so slowly I began to accept that this would not be the case.  Our reality was different.  One parent went on the “outing” and one stayed with Johnny or took him to a “safe” place for him.  Which, at the time, involved any place with a train.

As he has gotten older, with different behavior therapy and some better coping skills (for everyone) most outings have gotten easier.  He can also be convinced to “tolerate” a place with the promise of a “treat”.  For him, this involves pizza or ice cream.  He will do most anything for  ice cream with chocolate syrup.

But lately I have wondered who it is for.  Me or him?  And is it “fair” to him to push him into these anxiety fueled situations?  Is it helping?  Is he really learning to cope any better.  Or am I possibly causing him greater anxiety?  And is that anxiety almost fear, like “no way out, I have no way out.”

Don’t get me wrong, we do not, on a daily basis, put him in situations we know cause such stress and anxiety.  But at times, it is unavoidable.  And at times one of us quietly excuses ourselves and remove Johnny from the “too much” of whatever is stressing him out.

I have been thinking about this in relation to things or activities that I greatly dislike and cause some stress and anxiety.  For example, last week we were going as a family to watch Big Brother play basketball.  On the car ride The Captain was listening to a CD of  heavy metal music.  I HATE heavy metal music!  I thought I was going to come out of my skin!  When finally it was turned off I actually said, “Thank God!”  I hate that stuff.

And this is only an occasional occurrence for me.  Unlike Johnny, whose whole world seems to be stress inducing.

This caused me to reflect on the expectations we put on him.  In the interest of what?  And for what… Ice cream?  Because I got to thinking, I would not EVER take a ride in a car with blaring heavy metal music by choice.  And certainly not for the promise of a stinking ice cream.  

In the end we do it for him, I believe.  For his future, to help him learn to cope with a world that  seems to have an unfair advantage over Autism.   Maybe the world and autism could meet in the middle…maybe, someday, for Johnny’s sake, and not just for ice cream.

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Friday Fun – Let the Good Times Roll

Hilary at Feeling Beachie says it is time for some Friday Fun!  I’m in.  I’m all about the good time.   After you read, I’m sure you will agree.

Just today I had more fun than one individual should be allowed by law.  In fact, when word of my day spreads, I’m sure there will be an investigation.  You can’t go willy-nilly  living your life in such a wildin your face manner without expecting to pay the piper.  I mean, what would become of society.  We’re already in a world of hurt, state of utter mayhem, so please, after you read, keep it under wraps…please?  And thank you.

Okay, okay, I’ll stop baiting you and just get on with it.  I’m sorry I cannot give out my personal information such as address and phone numbers so you could come cavorting but like I said, we don’t need any authorities involved.  Okay, enough teasing…here goes.  Hold on to your hat!

Well, TWICE, yes I said TWICE this week I was the substitute librarian at the school.  I got to use the cool checker inner thingy.  LOVE that thing!  And I got to read to little people.  I even got a round of applause.  Yay me!  Not too bad, if I do say so myself.  They loved my dramatic interpretation of “Arthur’s Big Valentine”.    Eat your heart out, Shakespeare!

So today, with Johnny in tow, I make my grand entrance into the school.  All ready to use the checker inner thingy, sip some coffee, practice the Dewey Decimal System,  then make a dash and get Johnny to his school.  Like I said, too much fun, is just that…too much.  And just as I expected the authorities got all involved.  Yep, that’s right…The Vice Principal.  Not the total Big Guns, but big enough to know the party was over.  Cause she was waiting to inform me, that NO, I was not going to sip coffee and recite the Dewey Decimal System.  And forget about the checker inner thingy.

She told me to pack it up, cause, I was going to… say it isn’t so… to TEACH MIDDLE SCHOOL GRAMMAR.  Like I was tolding you say it ain’t so!  Just like that, without warning, I was sacrificed to the Middle School Wing where all I could see for miles (well, maybe feet) were a whole lot of kids a whole lot taller than ME!

That’s okay, though, I walk small but carry a mean stick.

And after a short time it was pretty clear that not much has changed in the Middle School classroom since I was on the other side of the desk, a few too many years ago to mention.  Yep, the game, pull one over on the sub is still alive and well.

Problem for them, I KNOW ALL THEIR NAMES.  My kid is in their class and  I know their parents phone numbers!  So, WHY, would they think I would not notice if they all sat in a different seat.  I’m not the sharpest tool in the shed but I can read a seating chart!  Geesh, some credit please!  Or like I told them…and I thought you were smart kids.

Oh yeah, and kids, if what you claimed were the teachers rules, NOBODY would hate Middle School…EVER!  Despite the social torture… with that kind of resort classroom environment, everyone would be so darn happy, having so much fun, there wouldn’t be time to mentally torture your peers!

Heck, maybe I would have even liked Middle School and even my Dear ol Dad said he never wanted me back in Middle School.  Guess I was just that delightful.  But I digress…

And another piece of exciting news…again…don’t tell the fun police…IT’S OFFICIAL… After today, I have officially subbed in every grade in the school.  From pre-school to 8th grade.  Now that’s a solid resume, right there.  But, alas, you know what they say, Jack of all trades, master of none.  Guess the party’s over.

But not until I get to the Four Friday Fill In…

This week’s statements:
1. Sometimes I _____ that is why______
2. All I ___________ for ______________ is ____________.
3. I _____________ therefore ____________.
4. McDonalds’ is _______________ and ______________.

What I have to say about all of this fun

1.  Sometimes I can’t get enough of a good time that is why I substitute teach.

2.  All I ever wanted for myself is to enjoy what I do all day.

3.  I am a twisted individual therefore I have a twisted idea of what is an enjoyable day.

4.  McDonalds’ is a perfect example of a horrible meal and I am in their drive thru on a regular basis.  Not proud, it’s just the facts.  And remember, I said I’m all about a good time.

So, with that in mind…HAVE A DRINK ON ME and LET THE GOOD TIME’S ROLL!  McDonald’s diet cokes for everyone!!!!

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Matters of the Heart

It’s that time, well, actually, past that time but I guess when it comes to doing the Time Warp, time is relative, right?  My friend Kathy at Bereaved and Blessed hosts this blog hop once a month.  She explains,  “The gist of Time Warp Tuesday is to revisit and share some of our favorite blog entries from our archives and reflect on our journeys since we wrote them.”

(To read more: http://bereavedandblessed.com/2013/02/time-warp-tuesday-heart/#ixzz2KoF8xqFH)

Appropriately, the theme for February is  heart.  With Valentines Day upon us the matters of the heart are all around us.  Everywhere you look is your big chance to show your affections by showering your sweetheart with Valentine sentiments.  To show them what is in your heart.  Thanks to good marketing the possibilities are endless.  Your choices  span from heart shaped pizza to donuts to chocolate, to cookies, to tasty truffles…and if you are really lucky…big gluey, sticky construction paper hearts with rough edges and cryptic messages written with the best crayon left in the school supply box.

I wish matters of the heart were always this clear.  But they are not.  The heart is delicate and can be broken.  Once broken, not easily healed.  But being a complex organ it is capable of loving beyond measure despite being cracked.

And how would it be if matters of the heart were always so clear as to be eloquently stated on a heart shaped piece of paper?

When I began my blog in May of 2010, my heart was newly shattered.  There was no “healing” taking place.  I was too numb to even consider that “h” word.

In fact, when I first began writing, the subject of such grief and pain was only mentioned as an after-thought.  You see, I was seeking only to entertain.  My intention was to write the humerous antecdotes surrounding Johnny’s adventures.  When I went back and read through a few posts I found I skipped around any matters of the heart and stuck to the topic of my Johnny and his brothers.  This then  became a sort of escape.  Then my life could appear only funny, and not sad.  Tears of a clown, isn’t that what they say.

With my heart not in it, blogging was more of a chore.  Even though I really, really love a good story, followed by a big ol belly laugh, while ignoring the contents of my heart it was becoming too difficult.

Around the 16 month anniversary of Madeline’s death I was overwhelmed with fresh grief and sadness.  The thought that she had been gone from this earth as long as she had graced and blessed us brought a wave of emotion.  This mixed with the memories of her last moments haunting my days.   I felt a certain anxiety pushing me to try to assign words to these feelings.   Instead of thinking what readers wanted to read, I listened to my heart.

So I chose this post I wrote in March, 2011, at the 16 month anniversary of Madeline’s death.  I have since been told on many occasions that I write from my heart.  But that has not always been true, I can pinpoint when my writing shifted.  This, I believe,  was my first product of listening to the calm place in my heart and not all the noise in my head.  And in that calm place I dumped the contents of my shattered heart into this post and the words seemed to flow.  Fluid but raw.

It is entitled, “Sweet 16, Baby Girl”.

Almost a year has passed and my heart has moved from the sharp pain of shattered fragments to an ache of longing and emptiness.  I feel that I no longer remember  who I was before Madeline was born let alone the person I was before she died.

Pouring my heart out in this space has helped put a few pieces back together.    As you know by now, that post was just the beginning and I continue to write about Madeline, her life, and my life after loss.  At times it is very raw and other times my heart simply overflows with love and my sweet memories

I still struggle with many “if-only’s” and “what-if’s.”  Unloading some of this has brought unexpected rewards.  Instead of people running away in droves I have actually developed relationships with others, some struggling with a similar loss, some who just have a better understanding of my world and strong shoulders.

It is difficult to quiet all of the noise.  To make any sense of how and why this is now my life.  I don’t know if this is something my mind can answer because in matters of the heart, there is a voice from the broken pieces, trying to be heard, if only one will  listen.

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Cause I’m YOUR Mom…

...AND I SAID SO!

…AND I SAID SO!

Monday, Monday, Monday…What have you done for me lately? Except for that familiar feeling of screws being tightened really, really tight on either side of my head, I would have to say…NOTHING! But in all fairness, I don’t know who can claim the clamp on the screws, Monday or The Brothers.   They all are excellent handymen!  Very adept with the ol’ screwdriver, that’s for sure!

Depends on the Monday and which Brother, I suppose. Since everything is supposed to be all equal and no one EVER feeling left out I BLAME ALL OF THEM!!!! Cause that’s the kind of stand up Mom I am.

The screw began to turn slightly last night when Little Brother, wouldn’t stop his Irish jig and dropped my Kindle Fire HD on the ceramic tile…not a good combo;

Big Brother took his turn on the screws with the Science Fair project that won’t go away and Oh by the way, apparently points are deducted if you do ANYTHING other than the day before. Guess he’ll have an A Plus.

We’ll have plenty of time to discuss as he burns the midnight oil studying for a test he discovered at 9:00 p.m.  Guess penalties also apply for any early test preparation.  He’s really adding up some extra credit in the last minute, fly by the seat of my pants, make my mother scream category…I think that should be added to the grade card…then my boy can be creme de la creme.  Oh and Big Brother, thanks for that, that one screw was getting a little lose, so the tighter the better, I say.

And then there’s my Johnny, what would we do without my Johnny..I might just have to say he gave those screws on final, really tight go. Because we just can’t stay away…there we were… RELIGION Class!!!

I guess Johnny got wind of today’s events at the Vatican, because he tried to jump on the Pope’s Bandwagon to announce…”I want out of this program…I don’t think it’s my thing.”

Yeah, well, I DO…cause I didn’t schlepp you and your brothers to Mass every Sunday for nothing.  And I don’t really care what the Pope’s Mommy let him do, but as for me,  I still got some sacraments coming my way. So guess, what, Johnny? The Pope… he may be getting out, but YOU?…YOU’RE NOT!!!!

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Timeless

I’m a little late but nonetheless I jumped on the bandwagon.  I’m not usually one to follow a television series, especially a drama.  But a few weeks ago every where I looked I was reading about the highly anticpated return of season three of Downton Abby.  I generally love any stories set in that time so it felt like a win-win.

After watching episode 1 of season 3 I was in.  I then pooled my resources, got my hands on seasons 1 and 2 and proceeded to watch as if it was my full-time job.  Turns out you can get a lot of laundry folded with the right show to keep you on the sofa.  Downton Abbey was just the ticket.  My family has never looked so fresh, clean and neatly pressed.  Turns out the clothes don’t look so bad if not left a wadded mess in a basket.

Plus after watching all those housemaids work themselves silly, pulling my clothes out of my large capacity dryer seems the least I can do.  Still, I can’t say I was motivated to scrub my floors but Rome wasn’t built in a day.

I am fascinated by this show.  The life of the English Lord and Lady.  A life where you seem to spend a great deal of time changing your clothes, eating and drinking wine.  And the best, they don’t even dress themselves or do anything for themselves for that matter.  Needless to say I have spent the last couple of weeks completely entertained by all who dwell in Downton.

Fast forward, with dedication and hard work I managed to complete seasons 1 and 2.  After flipping through my DVR, I am officially caught up.  Which leads me to Season 3, episode 4.

Spoiler alert if you have not been watching, but I must share this.

After watching the first 2 seasons I was prepared to be mindlessly entertained.  And then things got real.  I believe it is episode 3 that I thought my place at Downton might be lost.  As I watched Sybil labor so painfully and all the talk of preeclampsia, I knew things weren’t going to end well.  What I was  not prepared for was watching Sybil die.  And Sybil’s Mom watching Sybil die.  And everyone standing there, and NO ONE doing anything because there was NOTHING they could do.  And Sybil’s Mom yelling at everyone to “PLEASE DO SOMETHING, THAT’S MY BABY!”  Her calling out for Sybil to “come back” to “just breathe.”  Watching her baby struggle for air and turn one horrific shade of purple, then another.  And still Lady Grantham continues to beg her baby to come back, don’t go.

I am aware this is fiction.  That Lady Grantham and I are more than worlds apart.  But there are some things that history and time cannot change.  My body felt numb and cold watching this, as I have lived a very similar scene.  I was watching my real-life nightmare being played out on my television.  The begging, the pleading.  The utter despair as you watch everybody around you accept what you refuse to.  Reason would have said, SHUT THE DAMN THING OFF!  But not always reasonable, I didn’t.

As I watched her talk and say “good-bye” to her “baby” tears streamed down my face.  Such a touching scene.  But if you have lived a much to similar experience it is almost too much.  The way she just stroked her skin, taking her in, to commit to memory every detail of her child.  Because, truth is stranger than fiction and you are afraid.  Afraid you won’t remember, how they feel, the lines of their face, their sweet lips.

Touching and heart wrenching last night’s episode really hit home.  Someone mentioned to “Lady Grantham”, “now that that’s over.”  Her reply resonated with me, “when one loses ones child, is it really  ever over.”  The look of terror on everyone’s face when they realize their new normal that they cannot “fix” this problem.  Even the Dowager still tries to at apply  a bandage by forcing the doctor to tell the parents she would’ve had no chance of living.

I still have a few unanswered questions about the morning that Madeline died.  Some what-if’s and if-only’s.  If they were ever able to be answered would I find some relief or would wounds that have soothed somewhat be scraped raw again?

I don’t know why I couldn’t pull myself away once my “escape” became a mirror of reality.  But in a way, I think it was a little affirming.  Watching so many of my feelings and emotions acted out for me.  I wanted to scream, YES, THAT’S IT, THAT EXACTLY HOW I FEEL/FELT.

Truth is stranger than fiction.  Always we crave answers that aren’t there and an ending to our pain that might never come.  Quite possibly a feeling, experience that the neither the passing of time nor generations can change.

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Subtle Ways

My Dad has been gone for almost 7 years.  I think a great deal about him  and have moments when I wish I could call and tell him something, especially about the boys.  They were 7, 5 and 3 when he died.  The Big Brother is really the only one who has a memory of him. Funny what he remembers.  “I remember Grandpa Ron was pretty cool, he ate my peas once so I didn’t have to when you weren’t looking.”  Grandpa, the “Hero”.  What makes this funny,  is that Grandpa Ron was the kind of guy who ate anything and didn’t have what you might call, discerning taste buds.  Also, proof that being a Grandparent changes a guy, this was a man who probably started The Clean Plate Club.  I’m pretty sure me not finishing my peas would not have been an option.

I do love to hear these little tidbits.  I remember him visiting and helping Big Brother finish getting ready for school.  My Dad was not that comfortable making small talk with small children but there were certain things that broke the ice.  A big one was that Grandpa Ron attended Catholic school back in the Scary Nun with Ruler days.  So, helping with belts, tucked shirt, combed hair, shined shoes.  That was his area.

I do wish he could know The Big Brother now as a “young man.”  Because although the Big Brother is a carbon copy of The Captain.  I mean the apple hit every branch on its way down.

Case in Point

Case in Point

Mere strangers and acquaintances have stopped to remark on the “mini-me” factor.  Except the Big Brother is not so mini anymore and is just a few pizzas shy of being taller than The Captain.

That being said, as time passes, and he is becoming himself, I have begun to think he really reminds me of a man I knew once…Dad.  Not big obvious ways but in subtle ways.  For starters, like I said, it is pretty much a done deal that he will soon be the biggest person in our house.  His wrists are the size of a forearm, and well, more than one  person has informed me…”That’s a Big Boy you got there.”  I’ve noticed something in his stance, which seems so familiar.

My Dad to was  a Big Ol Boy with wrists the size of a small person.  He was a guy’s guy, biggest sports fan you would probably ever meet.  But also could Waltz,  Fox Trot and loved musical theatre.  To this day when I smell Comet, I think of him cleaning the kitchen listening to “Camelot.”

He played softball as long as I could remember.   I remember he would always hit the ball but as you could say, he was not built for speed.  Not the best player but the best TEAM player.  Come to think of it, he pretty much did everything at his own pace, just like a certain Big Brother I know.

These  little  reminders hit me out of nowhere.  The Big Brother is not always the best athlete on the team but he is almost always the best sport.  Don’t get me wrong he can hit that ball, but like Grandpa Ron, not the fastest guy around.

Like Grandpa, Big Brother is a boy’s boy, that kid can take a punch and hasn’t heard the bad “pull my finger” joke yet.  He to, likes musical theatre and when he was younger was in Les Mis and Big River.

It warms my heart to see this “Gentle Giant” type personality coming through.

Grandpa Ron & Big Brother

Grandpa Ron & Big Brother

This morning at church as the ushers were picking up the collection I was hit by a wave of memories.  For as long as I could remember my Dad was an usher at church.  He was baptized in the same church his funeral was held so he was a familiar figure.  I was sitting having these thoughts watching the usher in a “sport coat” do his job.  On the hottest of days my Dad always wore a “sport coat” to church.  This brought a smile to my face to remember him tapping me with the basket to put my money in. (It was Scout Sunday and the Scouts were helping as ushers, unbeknownst to me. )   I then turn to see an usher with that familiar stance and forearm and feel my eyes fill to see Big Brother doing usher duty.

Not a HUGE event but it was one of those days that I wish I could run home and call and say, “Guess what Big Brother did.”    Almost as much as I would have liked for him to watch him play ball, I would have loved for him to see Big Brother as an Altar Boy, as an usher and in his school uniform  I think it is these little things that  were learned from his example, being passed on,  that would be the greatest gift for him to witness.

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Perfect Love…Forever

Lori  of Lavender Luz challenges us to look the perfect moment.  If you look hard enough, they are all around you, you just might not be seeing.  The more you see, the more you will find.  Which was my thought as I stood in The Big Brother’s room last night staring at a photo.

But in the beginning…

I was a steadfast on holding onto my motto, “I’m a BOY mom!”  My other battle cry, “NO! I am not going to have anymore, have you met my boys?”

The Big Brother had to have been in ear shot of all of this.  Afterall, I do have a big mouth.  But as is his habit (or anyones, for that matter) he had fine tuned the skill of selective listening.

He was in second grade when the family moved in across the street.  A gorgeous family with three adorable little girls.  His favorite, Baby Mollie.  He couldn’t get enough of her.  Blasting into the house he would brag about how good they said he was with her.  To which he would use as ammo to plea, “see Mommy, if you have another baby, I can help you, cause I’m good at it.”  While I was touched… this was not enough to motivate me for further sleep deprivation.

Another tactic he used in his ongoing argument was his assurance he would not leave me “all alone” in the hospital.  “Remember when Little Brother was born and I came to visit you?  Wasn’t that nice?  If you have another baby I will come and visit you, again.”  All very touching but still, I was remembering the much wanted, neglected hamster I had been caring for and  was not completely buying what he was selling.  Touching as it was.

So, imagine his great joy and delight when much to our surprise, The Big Brother was going to get his wish.  A Baby, just what he always had wanted.  The newness of his two brothers had worn off long ago so he couldn’t wait for his new brother or sister.

I don’t recall him wishing for a brother or sister but I remember he wanted to name a baby girl, Tootsie.  He thought it would be great fun to be able to call her Toots.  Boy, girl, he didn’t care, he was on board, 100%.

When Madeline arrived he in love had been making great plans for homecoming.  I remember being just so sad for him, when he was told Madeline was rushed back to the hospital and would be there for many weeks.  That, was not what he had been planning.  He had been practicing for this moment for 9 months.

But good to his word, he was a faithful visitor and from the start, an adoring, loving Big Brother.  Any chance he got, he was at her side or picking her up, or squeezing her with all his 10-year-old might.  I could just kick myself for all the times I begged him to “give her space”.   Because I learned too late he just couldn’t get enough of all that cuteness…no one could.

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When finally, Madeline was going strong and spending more of her time at home, Big Brother took full advantage.  A favorite memory, I was taking her to get a picture taken in her Easter dress.  He skipped a laser tag party, grabbed his Sunday best and insisted on private photo session.  And yes…it was that precious.

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When Madeline died, within moments I thought, “I cannot tell him, how will I tell him, his much adored, desired Baby Sister is gone.”  In the end, I wasn’t even there when he was told.  A teacher whose care and compassion carried  The Big Brother through that year, was there.  She said she will never forget that moment.

As time has passed Big Brother, with some strong faith and guidance, seems to be in a different place.  Gone are the days of him asking can we “get” another baby, can we please adopt, Mommy?”  The permanence of this loss was too much on his heart and mind but he has seemed to tuck it somewhere inside himself.  Slowly, I thought, he  had moved on.  He had ceased talking as much about her and requesting to “visit” her in Chicago.  All healthy, I was assured, but still, caused a  sadness in my heart wondering if he thought of her still or had he, perhaps, outgrown his Baby Sister.

But 13 year old’s nature being what it is, I had not thought of a good way to ask without causing any unnecessary trauma.   Also, I knew I needed to be happy for this contentment and maybe I should be taking notes.

The Big Brother uses his new treasure, his  I-Touch as an alarm.  After learning we were going to have a weather delay, I went into his room where he was sleeping to turn off his alarm.  I picked up the I-Touch to crack the code on turning off the alarm, then I pressed the button to turn on the screen.  And much to my heart’s delight and through  a few tears this is the screen saver I saw my Big, Boy’s Boy 13-year-old I-Touch.

Madeline at HSC

Don’t misunderstand, I am very glad that he has found peace.  But I cannot tell you the warmth that filled me up to see the Forever Love he has for his Madeline and the quiet ways he has found to keep her close.

My heart is grateful for that perfect moment in time to witness such sweet and tender-hearted love for Madeline that I mistakenly thought had faded away.  Perhaps, instead, has found a deeper place to grow.

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Pooh…Is that you?

Everyone wants to be considered unique.  One of a kind.  Afterall, isn’t that the wonderful thing about Tiger, “that he’s the only one!”   Stand out!  Be noticed!  That’s how to make your mark.  In school, career, and, I guess, life in general.  The great desire to be one of a kind.  Gives us an edge.  You know, we all want the peverbial mold of us to be broken.

The irony being as a child generally we just want to fit in.  We don’t want to be noticed for anything unique.  And heaven forbid, don’t call us different, that could lead to a complex that could lead to permanent scarring.  Cliques, crowds, teams, clubs, all packed with members, all being watched by those on the outside just yearning to be one of them.  Perhaps many of us still feel this way, like the child looking to belong.

I was previewing a book, for my niece, by Kelly Cutrone entitled, “If you have to Cry, Go Outside.”  Kelly Cutrone is a mogel in the PR fashion world.  As a success she is always being asked, “how she made it?” “what is the secret to her success?”  This book was to answer some of those questions.  To help my niece get her start in life.  I liked her basic message, which seemed to be, work hard and don’t be a big ol’ crybaby!  No secret, just work.  Perfect for twenty somethings starting out or anyone…really.

Another point she made to the up and comers was to find “your tribe.”  Your tribe that is like minded, that you can travel with for nurturing, guidance, socializing and basically cultivating a “little family” that will be your soft spot to land when you fall on your butt one too many times.  Thus, lacking the ability to use your own untapped, super human strength  to pick yourself up by boot or bra straps.  Makes perfect sense to me.

Sounds like the basic theory that revolutionalized the support group.  A place to share with like minded people, with similar life experience, generally trying to accomplish a common goal or endure a common circumstance.  People who will “get” you, understand how your mind may be working and what exactly brought you to that mindset.  A tribe, if you will.

With a tribe, you can preserve all straps and elastic.  They don’t get as much wear and tear, afterall,  if you only need to pull with one hand while leaning on a shoulder (or shoulders) with the other.  The ultimate in strength…balance.

Even in the world of loss and grief, there are groups.  Widows, widowers, parents who have buried a child and children who have buried a parent.  Break that further into causes of death and ages and many different groups develop.  Thus, giving most of us a place to land…a tribe.

In my case it is the group that have buried a child.  But in that group I still cannot find my tribe, my sub-group to Pow-wow with.  I have come into contact (and developed relationships) with others who have buried a child.  Still we are not alike.  I don’t quite fit in the Infant Loss community.  Madeline was 16 months when she died.  Considered more a toddler to many, I suppose.  She grew in my womb, drew breath, and though too short, she had life, which can be contrary to the many heartbreaking stories in the infant loss community.

The other community that nurtures it’s members through loss and heartbreak or those who have lost a child due to a battle with an incurable disease, such as pediatric  cancer.  These parents know what it is like to receive this horrific diagnosis, watch their child fight the disease with herculean strength, yet it was out of their hands and their life now has an irreprebable hole where their child used to live.  Sadly, there are many, many people in this group.

Again, like me, despite super-human levels of fight and determination, they still lost their child… their baby.

Yes, I to, have buried my Baby.  As I said, Madeline was 16 months old.   Her diagnosis, Down Syndrome.  While I was pregnant, I had a fetal echo-cardiogram, in which they determined that she also had a congenital heart defect known as a “complete AV Canal” and a fused valve.  All very common in Children with Down Syndrome and all “highly treatable”.  Although I understand there are no promises, we were told there was over a 98% success rate with babies who had this procedure.

Soon after birth a blockage was found in her stomach.  A month later, a feeding tube.  A month after that, open heart surgery.  Then just when we thought we were in the clear, an emergency trach.  Only to be followed up a month later with another stomach surgery.   All things that knocked us pretty hard to the ground but just like those inflattable punching bags, we bounced right back up.  If nothing else, we were determined.  These were all just setbacks, hurdles to jump to get Our Sweet Girl to continue to grow strong and healthy.

After all, who ever heard of anyone dying as the result of Down Syndrome?  Not me.  So, I guess, I did not allow the thought to cross my mind.  When I had lost all patience and understanding for her surgeries and hospital stays I clung to faith and hope.  Just praying to get through this one more hurdle and the hope that it was the last one.

But pray, love and hope as we might, it just was not enough and Madeline was gone.  I recall in my state of shock having the thought, “this did not happen”, this COULD NOT have happened.  A Baby doesn’t die from Down Syndrome.  WHO ever heard of this?  So, WHY?  Why?  Why, did it happen to me? Why anybody, why Sweet Madeline?

And…am I the ONLY ONE?

I feel like Tiger and I don’t want to be Tiger.  This is my  problem…I HAVE NO TRIBE!  I have found NO ONE one who is exactly like me, having the exact life experience.  I really don’t want to be the only one.    Being Tiger is actually making me feel more like Eeyore…sad…alone.

I am the only one, that I know of, who has lost their Beautiful Baby as the result of medical complications due to Down Syndrome.  Not that I want anyone else to be in my tribe.  It is painful and sad to be without your Baby.  However, I keep thinking it would be somewhat comforting to be a shoulder for someone else who has buried their own “Madeline.”  To have said yes to life and taken in all the love, wonder and beauty…and are now left with — good-bye.  But you weren’t ready to say good-bye because you were caught up in all the joy that this gift..this child…brought you and your family.  And you waited with anticipation for all that was to come.

Two years later this tapes still plays in my head.  Where are my people…my tribe.  The people that have had an almost exact life experience that can listen and truly know just how I feel.  How it feels to learn that your baby has or will have Down Syndrome.  That experience alone.  Then to hold this child in your arms for the first time and fall completely head over heels.  To want nothing more than to take them home and let them be a sibling to their adoring brothers.  Instead your family exists on a hospital/ICU schedule.    To live this experience and to ultimately watch your child die before your eyes as you stand helplessly by.  WHERE IS MY TRIBE?

The people that know that all life has purpose and know that down syndrome did not lessen the value of your child’s life nor the pain of their death.  The same people that possibly stare at any child they see with Down Syndrome and either want to cry their eyes out or continue to stare,  eyes green with envy.

And just maybe they understand what it is to want to run up to someone they see with the tell tale features, are completely taken in by their beauty and want to tell them all about their “Madeline.”  But you can’t, because you just can’t ask all about their child and then say, “My child has Down Syndrome to, but now she is dead.”

I do have wonderful, caring friends, who have lessened the wear on my boot straps and scooped me off the ground.  But lately, I feel that I don’t  have my place.  It is lonely.    I want to belong, be like someone else, so we can catch each other as we fall.  We can get each other and lessen the wear on our boot straps.

Perhaps it would be a little less lonely to be Winnie-the-Pooh.  Afterall, he has Christopher Robin.  Troubles seem to feel lighter when you have a Christopher Robin.  I need Christopher Robin.

pooh

Perhaps I am not Tiger after all.  Perhaps I am Pooh..and I’m not the only one.  Or, perhaps I am Christopher Robin and Pooh is out there waiting for me.  Perhaps I need to look further into the Forest.

“You can’t stay in your corner of the Forest waiting for others to come to you. You have to go to them sometimes.”
―    A.A. Milne,    Winnie-the-Pooh

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