Tag Archives: parenting

My Say

Today, like many others, is very bittersweet.  Filled with too many emotions that drive me to distraction.  All around the talk of the Big Snowstorm.   So, here I sit, in  a daze, waiting for the big one to hit.  I have a stocked fridge, pantry and a really good bottle of red if it really hits the fan.  Cabin fever, that is…

Snowstorms sound so romantic, nostalgic, and kind of like a Hallmark Network feelgood movie.  Images of making warms soups, hot cocoa and sitting by a roaring fire.  Your wholesome snacking  enhanced by playing board games and putting together puzzles with your family.  Only taking a break from the warmth and hilarity to dash out and frolic together in the snow.  

I wonder where that family lives?  Because as soon as I get their address I’m heading over while the roads are still clear.

If and when this epic March snowstorm hits I’m guessing the Hallmark movie playing in my head is not the same Reality show that will play out in my home.  Yes, there will be lots of snacks.  Mainly me stuffing myself with chips and diet coke to ensure my sanity.  The warm delicious soups I want to make will only be consumed by me.  Because as Johnny likes to tell me, “me and my brothers only eat good food.”  If you can’t compete with Kraft Dinner and Tombstone Pizza I find it best to just wave the white flag and carry on.  Plus, all that homemade goodness warms my tummy and fills me with fortifying vitamins until a respectable time comes that I may, shall we say, partake of a bottle I’ve been saving for just the right moment.  That moment would be the moment just before my last nerve ending pops through my skin and my Hallmark movie turns into a Simpsons episode.

I don’t care how much space you live in, a lot of testosterone is just that…A LOT!

The brothers are, of course, excited about the possibility of a snowstorm!  Well, a SNOW DAY.  But really, who doesn’t enjoy a good snowday!  They are full of possibilities.  Like I said, when I find out where that family lives, I will let everyone know.

I would be excited just to be able to stay in my jammies and not pack lunches.

It has been a couple of years since we have enjoyed a good snow storm.  This predicted storm would be so simple.  All that I require I already have at my disposal.  I should be filled with anticipation, excitement, and a warm cozy feeling… right?  But I am not.

My heart does not feel light.  Something very heavy is sitting on my chest and is causing my constant ache to begin to throb.

For the last big snowstorm jammies and wine were not even on the list.  My list consisted of ensuring that all durable medical equipment in the house was fully charged.  That all trachs and supplies were fully stocked and all oxygen tanks ready to go, if necessary.  Checklists like, did we let the Utility company and Fire Department know that we have a child with a trach in case power goes out or our street becomes inpassible?  And then the moving of a mattress and all medical equipment to the family room to be ready for when the night nurse calls to say she cannot make it to our house and we are “on”.

That was the last snowstorm I remember.  It was nerve wracking.  It was scary.  It was exhausting.  And I want it back.

I want to still be that Mommy.  That Mommy that has a Baby Girl with an extra chromosome and all that comes with her.  All the extra  that made Madeline…Madeline.  It was hard work and she kept me going 24/7.  And I miss every damn bit of it, every damn minute of the day.  And yes, I would do it again.  And NO, I did not like my baby girl to suffer, to undergo all of the surgeries and other poking and proding but I miss HER.  I just do.  It is that simple…and that complicated.

Try as I might I am having a very difficult time finding a new occupation.  Someone forgot to ask if I was interested in getting a new job when the angels were sent to carry her home.  They forgot to ask if  I had my resume together.  Because the answer is no.  The answer remains no.

Really, someone should ask before they take the best job you ever had, and with no words spoken, inform you it is your last day.  Your services are no longer needed.    Because if they had I would have said, please let me stay.   I will do whatever is required and more.  I’ll be on call 24/7 and never strike.   I’ll work for snuggles and rasberry kisses and will not demand a raise.  Let my bonus be watching her first steps and her first day of school.  Let my vacation in the sun be the illuminating smile on her precious face.

But no one ever asked…so I never got to say.

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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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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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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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She Rocks!

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Madeline – Rockin that Extra Chromosome!

I have been doing some lurking around the Down Syndrome Community.  Funny, that I feel the need to lurk.  So many emotions…the heavy hearted longing and wishing that things were different.  That I to could share pictures of Madeline rocking her extra chromosome and discuss the triumph of her hitting her milestones.  What I wouldn’t give for a video of her first steps or first words.   I see the photos of the other children and I can stare for hours.  Sometimes they make me smile.  And other times the tears silently flow.

I have a dear friend with a little girl, Ms. O.  Ms. O and Madeline would have been the same age.  Ms. O’s Mommy asked me once how I felt when I saw Ms. O.  I told her, ” I feel insanely jealous”, not in a hateful way, but in a way of wishing that I could be just like you.  A jealousy that perhaps only a mother of a child with DS would understand.   That instead of me going through hoops to get that Little O to hug me, my own Madeline could be here to warm my heart with snuggles and slobber me with kisses.

Do I still belong to that community?  I don’t know.  But do I care about that community?  WITHOUT A DOUBT.  When I see the other babies and children I think how lucky their family is.  Lucky to be blessed with this incredible person.  I know these families might think I “romanticize” what life would be like with Madeline.  Maybe I do.  I remember it was a lot of work.  Lot’s of appointments, hospitals and therapists.  It was exhausting but the pay off was beyond huge.  One cannot put a price tag on unconditional love.  Giving Madeline life and making that life full of unconditional love and unlimited possibilities.  She was strong in mind and body.  If her body was weak her Spirit was not.

That is what I see in the Down Syndrome Community.  Strength of spirit!  And the unmatched determination for  these children and adults to live a life where the possibilities are endless.   I see a community that wants nothing more than all people to know this about them and their child.  Isn’t that what any parent wants for their child?  I did…I still do.

March 21 is National  Down Syndrome Day.  3-21.  I love it!  I even got the t-shirt.  But this year apparently, they want to spice up the campaign and give it a theme.   Make it “Odd Sock” day or something like that.  I don’t even know the theory behind it.  My beef, why would anyone (especially, working on behalf of Down Syndrome) use the word “Odd” in its campaign?  Instead of helping others to move forward in any archaic beliefs they have about Down Syndrome, doesn’t this take us back to the world where the children were called Mongoloid and thought to have very limited capabilities.

Because I have learned first hand,  more people than you think still hold these beliefs.  The belief that these children and adults are somehow a burden on their families.  Sad but true…in any day and age…but now that we supposedly know better.  More than one person had tried to comfort me with Madeline’s death by telling me she would have had so many challenges in life or questioned who would’ve cared for her.

Don’t we all face challenges of some kind?  Aren’t we all a little “Odd”?  I know I am.  Ask my family, at times it makes me challenging to live with.  My boys would be more than happy to agree.  We are all different.  But for many of us we appear, “normal.”  There are no tell-tale signs of what makes us unique.  For the most part this prevents us from dealing with some long-held beliefs that others might see our life as less than in some way.

But for those who have the extra chromosome their path might not always be as smooth.  They will more than likely confront a road block or two.  Although much progress has been made, we are still in a time when as little as three years ago, when I first learned Madeline had Down Syndrome, I was then offered an appointment to terminate my pregnancy.

In order to challenge and change the belief that life with an extra chromosome is somehow of lesser value or even a “burden” I believe an easy step would be to refrain from using the word “ODD” when showing support for a community we love and care for.   Odd usually has a not so great connotation, like, “Odd man out”, “Odd-ball”, when something doesn’t seem quite right we say, “well, that’s odd.”  I could go on:  but I won’t.

Perhaps I do still have a place in the DS community.  Because when I read or hear things that remind me there are still many archaic beliefs about having a child with down syndrome it makes me crazy.  I would gladly work for any child to have the life I wanted for Madeline.  A life any parent would want for any child.  I don’t find that “ODD”… do you?

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Friday Fun with Farmer Brown

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Yay!!!  It’s Friday!  And contrary to what might be popular belief, we Stay at Home Moms, look forward to Friday like everyone else who is terribly underpaid for their service to others.  Except, unlike other workers, I am lucky…I receive sticky, smelly hugs, gluey art and a kiss (if I bribe them) from the Little Men who I work for.  In other work environments, I realize that is a lawsuit waiting to happen.  Guess that’s the benefit of my work.  The boys I work for would never sue, they know that they have traumatized  and inflicted more emotional pain and suffering, than the other way around.  Unless you, of course, consider the meatloaf I made for dinner last night.

For example, just in the last week, I have been informed by The Big Brother that he thinks the FBI is going to come and “get us”…why?  Weeellll, that’s what “the virus” on the computer told him when the warning came up about “downloading” let’s just say…inappropriate material.  Which lead to a very uncomfortable conversation about the “P” word, ends in… ography.  Having to have this discussion with Johnny is worth a couple of million in damages alone.

That fun event was only to be followed up by the Little Brother bringing smut into our Catholic home.  Yep…you guessed it…say it isn’t so…The Little Brother was busted reading, The Old Farmer’s Almanac.  Which, I (and “The Teacher” learned the hard way, IS NOT your Granpa’s Almanac.  Or maybe it is, and Ol’ Granpa had a Wild Side.  Because along with the weather report, The  Little Brother was able to learn about “improving life in the bedroom”  and certain “enhancing” pharmaceuticals.  Oh yeah, he could also order an Asian Bride.  And I will swear on a Bible that I did NOT make one word of this up.  I would bring out my witnesses but I promised to protect their identity.  She’s at Confession right now, anyway.

So…I think I can safely say…Bring on the Weekend!  Before I go though, it is time for Fun Friday Fill In with Hilary at Feeling Beachie.

This week’s statements:
1. I am a ____
2. Sometimes I don’t know when to ____
1. My two favorite words lately are ___________ and ____________
2. I would like ____________ if ____________ didn’t happen

Where do I begin?

1.  I am a very loyal person and friend.  I get very attached to those who have held me up during these last two years.

2.  Sometimes I don’t know when to say when.  This would be possibly why I have Three Boys and walk around like the house is on fire.

3.  My two favorite words lately are irritated and Almanac (come on, you saw that coming.)

4.  I would like to know what life would be like if my days didn’t happen to be a series of “Unfortunate Events” involving Farmers and the FBI.

That’s about it.  Have a drink on me and raise a toast to my “sanity.”  In the meantime I headed to  a local book burning of that Darned Almanac.

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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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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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