Tag Archives: family

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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The More Things Change…

Let’s do the Time Warp Again.”  On the second Tuesday of the month, Kathy at Bereaved and Blessed hosts a party in which the game is to look through your blogging archives and chose a previous post in which you mentioned the theme, then reflect on what has changed on your journey since that time.  The theme this month is Change.

At times I truly believe that old saying, “The more things change, the more they stay the same.”  Except I tweak it by adding…at least a little.

I have only been at this blogging business since May, 2011.  My first published post was on May 18, 2001.  When I started blogging (at the great and not so gently urging of friends) I wanted to be funny and witty.  I fancied myself a modern-day Erma Bombeck who would entertain with humorous anecdotes.  Mostly about Johnny and The Brothers.  I had always wanted to do that.

The problem…how was I going pull that off when I was only beginning to function a mere six months after burying our Beautiful Madeline.  Initially, I didn’t even plan to discuss her death and our paralyzing grief.  I wanted people to read and I thought if people tuned into all that, well, they wouldn’t come back.  But I am learning you cannot accomplish any goal if you are going against what is in your heart and on your mind.  That path leads to nowhere.

The post I chose is the first one I wrote where I mention Madeline.  I am discussing how Johnny is helping me cope with missing her.  It is rightfully entitled, “Just Too Much”.

Going back through my archives this what not initially my choice for this Time Warp, but when I read through I changed my plan midstream.  I read “Just Too Much” and couldn’t believe I wrote it.  Yes, the Johnny anecdote is one thing.  What struck me was the somewhat nonchalant tone I took when writing about Madeline and that experience that day.  It sounds so restrained and sterile…detached.  Because, believe me, I was there, that was NOT quiet sobbing.

I think when I started this blog I was so focused on what direction I thought I was taking my writing. The path that would save me.  The path that would put a band aid on what wasn’t broken and let me escape my own nightmare.  But somewhere on this path I discovered it was leading me in the wrong direction.  And I couldn’t keep up the dueling personalities any longer.

Today I like the path my blog is taking.  Life According to John is now reflects only ONE me.  The real me.  The me that likes a good belly laugh, especially at the absurd and most especially at the everyday absurd that is the chaos of my home.  But it also is the me that still longs and aches daily for Madeline…that still chokes back tears when everything seems to be too much.  

And now when it is just too much I dump it one here and each time I write about Madeline… her life and our life without her…I know I am taking a just one more step, a very small step,  on the path to Just Right.

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Bethlehem, VA? The untold story – In rear view

Made it through the Holidays.  Partly in a fog with an elephant sitting on my heart. The business of grief is a tough one.  You work long hours without a break and the Holidays just add a lot of “work” to the day.   But…with the help of amazing friends I was not committed.  More on that at another time.

Six days into the New Year and I realized that in the anxiety ridden fog about the Holidays, leading up to the fog of the Holidays, it came to me that I was not as in tune with what The Brother’s were doing.  Oh, don’t get me wrong…they weren’t quiet or anything…I was just half-awake.  Now I am AWAKE and I realize I might have missed about 100 pages of blogging adventures because they have been very busy in the last weekend writing this blog for me.  I will try to adjust my rear view and give you, Dear Reader, the highlights.

Here goes:  In no particular order…

Johnny asked me this weekend why I write a blog about him.  I told him because he was an interesting subject.  Might I add this conversation took place while he was parading around proudly in his new Batman costume.  Oh, was his response.

The following day, he asked me if I could become a surgeon.  For a moment I thought to be flattered.  WOW!!!!  Johnny thinks his mommy is that smart and YOUNG!  Never one to inflate your ego, Johnny cut to the chase.  “I want you to be a surgeon so you can operate and give me Bat Wings and a tail.”  Um, why don’t we just go MAKE you a costume.  A lot less unnecessary cutting involved.  Oh, was his response.

Speaking of New Years Resolutions…because I was going to…I was attempting to make some as Johnny’s Mom.  I fear that I have been sleeping on the job and perhaps Johnny needs a little pointing in the general direction I would like to see him go.  You guessed it…because I like to make my own kind of crazy.  I seem to enjoy being a busy body repairman.  You know, I show up to fix things that  ARE NOT broken and then plant my face in my hands cause you know what you get when you do what you’ve always done?  That’s right, what you’ve always got.

However, let’s not forget, I AM NOT A QUITTER!  So on I continue to repair Johnny.

Resolution:  We must return to religion class.  As you might recall last school year Johnny attended religion/CCD classes.  It was informative and entertaining for all.  Well…maybe not for all.  It is very difficult to teach about God and Jesus (who are not seen) to a child who only deals in what can be seen and touched (unless you are Santa Claus).  But it is important to me so we tried.  We have not made it back this school year but will be re-enrolling ASAP.  This resolution due to recent events

Friday evening, The Brothers had an Epiphany Pageant.  This meant a lot of people crowded into the church with lots of singing, trumpets, etc.  NOT Johnny’s preferred outing, EVER!!!  Where two or more are gathered, Johnny is NOT.  So, I thought it best to warn him and give him the usual lecture on  behavior AND the usual bribes.  Johnny doesn’t work for free.

Johnny – What is this thing called again?

Me – The Epiphany Pageant.

Johnny – Oh. (of course).  What’s it about?

WHAT’S IT ABOUT???  Oh Boy, Houston we have a problem (I think).  My boy does not know the Christmas story, so I gently say, “Who was born Christmas day?”

Johnny – Stares blankly.

Me – JESUS, REMEMBER?

Johnny – Oh yeah, right. (read with zero enthusiasm)

Me – (Thinking, I better get to repairing this).  That’s right, Jesus.  And do you know where he was born?  Which of course brought the response of a blank stare.  So I continue with a great sense of purpose…IN BETHLEHEM.  Remember?

Johnny – You guessed it…Oh.

Me – Because I just NEVER know when to quit…AND do you know where in Bethlehem Jesus was born. ( And that is when I knew I asked ONE too many question.)  Proudly he looks and says, “Virginia.”  At least he didn’t say, “in the batcave.”  Now it was my turn and I responded…oh.

Sadly, that wasn’t even the catalyst for my New Years resolution because Johnny and The Brothers never disappoint.

Driving to church on Sunday.  The Brothers are having a discussion about the “Holidays” of the season.  Johnny was talking about KWANZA.  Why?  I HAVE NO IDEA.  In mid-stream he switches gears and tells us Christmas is his favorite anyways.  And I learned my lesson Friday so I didn’t ask.  Although it is obvious why, even to me.

BUT The Little Brother did.  The Little Brother is oblivious to learning lessons.  Not waiting for the answer, Little Brother offers a possible reason that Christmas is the favorite.  And proposes…”Johnny is it because Christmas has the BETTER SPONSOR?  (Silence in the van…please let him say, Jesus)  SANTA CLAUS!!!  Guess him saying Jesus would’ve really been the Christmas miracle.

The Captain and I roll our eyes and open the doors to release our beasts in the church parking lot and out JUMPS JOHNNY bellowing…for NO particular reason…”and there is PARTIAL NUDITY!!”  Dear God, Please let him mean, Baby Jesus….you know, the one from Bethlehem…NOT Virginia.


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Blessed Beating?

Always Bless, then BEAT your brother!

Always Bless, then BEAT your brother!

Walked upstairs and found these strategically positioned outside The Brothers’ bedrooms.  Every man for himself………………..

 

Semi-Wordless Wednesday at Feeling Beachie, check it out!

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Sleeping Single?

No way out!

No way out!

Not only the last day of the year, but the LAST Monday of the month, as well.  Not only does this mean New Year’s Resolutions to make to be broken no later than January 2,  but it is also time to reflect on what has been a slice of perfection, for even a split second, in the last month for Perfect Moment Monday with Lori at Write Mind, Open Heart.

Not always easy, especially this month, which has held many challenges.  As I have said before, I believe I have done worn out my boot straps from pulling myself up.  Soooooooo, guess I’ll just have to buy some new ones,  as my Father’s voice continues to echo in my head, “I didn’t raise a whiner, quitter, or complainer.”  Thus my Boot Straps are on over night delivery and expect to be back on my feet……….or boots in the next 24 hours.

But while I’ve been “off of my feet” I got to thinking about what could be considered “my perfect moment” this month.  This brought me to thinking about Brotherly Love.  It seems to be an elusive, intangible bond…………..largely based on the fact that if you have Brotherly Love, you have all rights to trade their toys, eat their favorite cereal, steal their favorite book, blame them for anything missing or broken and  beat the crap out of them and you are still assured you have someone to play video games with the rest of the day.  I guess that’s what makes Brothers “lucky.”  

However, this is not something  I think that Johnny, The Big and The Little Brother are giving much thought.  I do think they enjoy having a “punching bag” though.  It is why I enjoy having a basement door.

Anywhoooooo, as I was saying……………..Brotherly Love, Perfect Moments……………not easy to combine.  But alas, I have………

Our home provides enough space that each Brother could have his own room.  However, it does not work that way.  Birth order having its privileges, The Big Brother does have his own room.  Johnny and The Little Brother, they share.  Why? Weellll, it must be character building, right?

Truth of the matter is, The Brothers are about the only friends Johnny really has.  A nasty side effect of Autism.  It makes me really sad at times but does not seem to rattle Johnny too much.  He is a solo operator.  Another reason it has always been so important for us that The Brothers learn to stick it out and stick together.

Mostly Johnny and The Little Brother get along just fine in their room together.  A little bit like the odd couple but mostly okay.  Except lately.  Lately, there has been some grumbling.  Johnny is a very early riser and not always quiet about it.  Causing The Little Brother to be up as well.  Causing a lot of “arguing” early in the morning.  On the other hand when Johnny is ready to go to sleep, do NOT get in his way.

Soooo, I started to think, maybe it’s time.  Maybe they need their “own space”.  I started to devise a plan for the “break-up” to happen over Christmas break.  Shared my plan with The Captain.  He was not “on board.”  His reasoning, “Johnny spends enough time alone, The Little Brother is his best buddy, I know he’s  9, but Little Brother is going to take one for the team.”

Hmmmm………….guess The Captain needs more convincing.  I was mulling all this over until one night……………………

Bedtime………………….and NOT a peaceful one.  Johnny and The Little Brother are at it.  Pointing fingers and I quote, “You’re annoying, NO YOU’RE annoying…….(get the picture)

Enter Mommy……………KNOCK IT OFF!!!  Johnny, “Mom, he’s annoying make him stop doing those noises.”  Now……..let me just say this never fails to crack me up when Johnny points the finger because he has just a few quirky ways.  Mommy had had it, NOT listening to anymore so I throw up my hands and BELLOW, “That’s it!!!  Johnny, get your things, you can sleep in your own room.  This news stops him in his tracks.  “WHAT?”

Johnny gathers up all things Batman and prepares to move.  “Where to?”  I tell him to Cousin Amber’s Old room.  So, he peaks out the door at the quiet, still room across the hall.  Then he turns and looks at his room.  All is quiet as he contemplates life on “his own.”  Next he looks at me, I continue to stare.  Finally, he speaks…………..”Mom, Can’t you just tell LITTLE BROTHER to stop being ANNOYING.”

Up pipes Little Brother……….”OH YEAH!, YOU’RE ANNOYING!”  In I chime………………Do YOU want to move to your own room?  A look of panic comes across his little face……………………No.

So in true Mommy style I state, with authority, “BOTH OF YOU, STOP BEING ANNOYING AND GO TO SLEEP.”

I turn and exit the room.   As I leave I feel a ping of joy and warm fuzzies………………………..Brotherly Love, True Brotherly Love……………maybe for more than a “moment.”

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A Moment in Time

I have been out of touch Dear Readers.  I have had a full mind and heavy heart , leaving me with a lot to write about but unsure where to begin.  Different for me, if you have had the pleasure of my company you know…………… I am chatty!  However, at times when the heart is heavy the words become stuck.  This has become the case.

Thus,  I was glad to learn from my friend Kathy over at Bereaved and Blessed it was for Time Warp Tuesday.  Just the motivation I needed.  Kathy invites us to visit an old post, reflect on “where” we were when we first wrote it and “where” we are now, in our thoughts or on whatever “journey” we may be taking.  The subject this months is “gifts.”  Very apropos as Christmas calls us to be in the “Spirit of Giving.”  Easier said than done with a grieving heart sometimes stuck in “wishing” and “hoping” for what “no longer is” or “never will be.”

I chose a post from last September.  We were fast approaching the One Year Anniversary of losing Sweet Madeline and the weight of the grief was suffocating.  Adding to the weight was watching her brother’s grieve and try to comprehend the unthinkable loss of their baby sister.  The Big Brother quite simply adored Madeline and was literally in her face at any opportunity.  Sneaking any chance to be cheek to cheek.  Not knowing what the future held I was quite often telling him to “please get out of her face, stay out of her room, let her rest.”  Reader, as you probably guessed, The Big Brother NEVER DID listen.  

As well, never did I dream this……………… his failure to listen …………….. could quite possibly be the best gift  ever.  I recount the day I received this gift in A Brother’s Love.

Welcome back……….I watched this again for the first time in a long time today.  I am still, today, as touched by the gentle heart my now Really Big Boy still has!!!!   I am even more grateful as I struggle through, without our Precious Girl, to have even just a moment preserved for a band aid for my heart.  To catch just one of those rasberry kisses.

As a Mom, I am on that poor boy all the time to just listen!!  Possibly, I should have learned my lesson with “Madeline’s Moments.”  What a treasure to have a non-listening child sneak in to video his “irresistable” Baby Sister sleeping.  To have this “gift” to watch these moments and feel completely transported to that moment when our Precious Girl lay sleeping in the next room and feel for just a “moment” that I could quite possibly just reach through and kiss and hug that Sweet, Sweet Baby.  And just for a moment I quite possibly felt her touch and  inhaled her sweet perfume…………….a gift………….no amount of money could ever buy.

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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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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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Filed under Johnny P, NaBloPoMo

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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Filed under NaBloPoMo, Precious Baby Girl