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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Friday Fun – Problem is…

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It’s that time again, Friday Four Fill-In Fun with Hilary at Feeling Beachie…to add to the fun, I get to be the co-host this week.  I’ve always wanted to be a co-host, like being Kelley Rippa or Hoda.  Problem…don’t know if Hilary wants to be Regis or Kathie Lee.  Another problem, Regis isn’t even around now so technically SHE  would be Kelley Rippa and I would be Michael Strayhan.  Further problem…I’m a LOT shorter than Michael and I spent a great deal of time being big and pregnant with braces so as NOT to have a gap in my teeth.  What do I have to show for it…NOTHING!!!  Weeellll…my teeth don’t look so bad, but fame and fortune have, as of yet, have been elusive.

And the REALLY, REALLY Big Problem…you get what you pay for!!!  See, I went for the budget version of blogging and I cannot get “linked-up”.  It feels like a childhood nightmare come true.  An adult blogging version of I went to school naked or didn’t study for a test, or slept through finals.

Being as I HAVE experienced much greater problems than this, I am trying to keep perspective, but feel a little like the nightmare where I am screaming and NO ONE can hear me.  Which is pretty true, since I am visibly stressed out and The Brothers have the nerve to still expect dinner.  I’m also pretty sure, teacher’s won’t buy “Mommy couldn’t get linked up” for a home-work excuse.

And for more fun…Johnny has McDonald’s on the brain and is repeatedly asking for a cheeseburger and shake.  And when I say REPEATEDLY that is a gross understatement.  Nothing says persistent like some slight (ha-ha) autism and a little OCD.  YAY me!

Anywhoooo…despite my technical difficulties, I am excited to have my first Co-Hosting gig, Thanks, Hilary.

This week’s statements:
1. I was probably the only kid in the world who ____
2. ____ is my favorite juice
3. I never thought I would____until I___
4. I have always wanted to_____ but_____

What I think…
1. I was probably the only kid in the world who hated arts and crafts, probably why I have a bin of half-finished crochet projects.
2.  Pink Grapefruit is my favorite juice
3. I never thought I would scream and swear at people until I became Madeline’s Mom and it became necessary.
4. I have always wanted to go to Paris but have yet to ever leave the country.  I know, what kind of Military Spouse am I?

Well, there you have it!  Thank you for listening to my problems, since I can’t get to Happy Hour to tell my Bartender.  Happy Friday!  Have a Drink on Me!

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What you said, Justin…

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Johnny P’s Mom….Bringing Sexy Back!

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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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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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Krispy Kreme Memories

Behind every Crazy Mom wondering how they got that way is a friend, at the ready, to remind you exactly how you got that way. 

Let me back track.  I love to write this blog.  It entertains and comforts me to have my place to say what is on my heart and mind…or not.  Today was an or not kind of day.  I woke up with a familiar anxiety which tells me I need to write.  But alas the cold front hit my brain and I was out of ideas…until I got one.

Sue to the rescue…not the first time.

I asked for readers to throw out writing prompts.  Anything they might like to know or read.  I promised fame in the blogosphere.  Being one for glamour and the spotlight, Sue chimed in.  “What about your crazy pregnancy stories, you know the one… my favorite.”  Which lead to an exchange to determine which story she was referring to because sadly…there are many.  But I had that ol gut feeling that she would let me run but not hide from my infamous morning at Krispy Kreme.  So for you, My Dear Friend, I shall tell the Chronicals of Krispy Kreme…

The year was 2003 and I was pregnant… again.  The Big Brother was 3, Johnny was 18 months old and I was about 7 or 8 months pregnant with The Little Brother.  To add to the excitement, The Captain was deployed to Iraq, the War had just started and we had no date for any homecoming.

Oh and I was trying to potty train The Big Brother.  I reeeaaalllly needed him to go to pre-school and he needed to be potty trained.  Let’s just say The Big Brother was NOT on-board.

Because all of that wasn’t enough fun I had developed some crazy reverse morning sickness.  So I spent April and May yaking around the clock and sipping purple gatorade.  I think The Little Brother still has a purple tinge to him.

You could say I was beginning to come unglued or I had just driven my train into crazy town.  I’m sure my friends will clarify.

Military life being what it is, my friends rallied around me and I carried on, purple gatorade and all.

During that time our only hope was Playgroup.  This got us out of the house.  It gave the Boys other faces to look at and me the opportunity to use sentences with more than two words.  It also gave Sue an opportunity to invite me over to her house.  I lived for those invitations.  Okay…I’ll admit I mostly invited myself.

Anywhoooo…this particular morning our Playgroup was going on a field trip…to Krispy Kreme.  The kiddos were going to get a tour and see how they make the donuts.  All very exciting stuff.

I was supposed to be there at 10 a.m.  I lived minutes away.  If only I could get in my car.    In trying to get there I had just a few problems… I couldn’t stop throwing up, The Big Brother would only pee-on the floor-after he got off the potty and Johnny didn’t walk yet and was screaming in the pack and play.  I believe I might have been shedding a few tears as well.

All I could think….I’m going to be late, I’m going to be late, we’re going to MISS EVERYTHING!  Finally, I am able to unwrap my arms from the toilet, put some dry pants on The Big Brother, calm down Johnny and we are off.

Like a Mommy on a Mission minutes later I arrive at Krispy Kreme.  Only problem, I am about 20 minutes too late.  Nerves completely frayed and sanity long gone, I enter and am greeted by Sue who asks, “Hey Ame, where ya been, ya missed everything?”  Let’s just say, I can take a lot–two toddlers, pregnant, throwing up, husband at war — but that was the perverbial straw that broke me.  My Boys MISSED the donut tour.  What kind of a Mommy takes that kind of information without emotion?  Certainly not me.

So, I did the next natural thing…I stood in the middle of Krispy Kreme, 8 months pregnant screaming and sobbing uncontrollably, “I COULDN’T GET OUT OF THE F###IN HOUSE!!!!!!!”  AND NOW MY BOYS MISSED THE TOUR, THE DONUTS, AND EVERYTHING.”  Except I was in such a state it took an interpreter (and two good friends) to understand.   Weeeelll, I think the “F” word came out pretty clear.

I then proceeded to have a good ol cry and complete melt down in the middle of Krispy Kreme.  That, Dear Reader, is how Krispy Kreme became an adjective.  A perfect, concise term that describes all those moments when I can’t take it any more and all my hinges pop at once.  They are my Krispy Kreme moments, days and weeks.  Thank to  Sue, I now have this mug for all of those times…

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Nothing, and I mean nothing, says crazy quite like a Big Crying, Cursing Pregnant Lady in a Krispy Kreme.  Or as Sue said, as she laughed, “trust me, someday you are going to laugh about  how crazy you look.”

Well, Sue, I guess the day has come finally come…

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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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Darn the Luck

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Semi-Wordless Wednesday — My “Lucky” Bamboo Plant — Explains a lot.

 

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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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