Tag Archives: loss of a child

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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Semi Wordless Wednesday – This Love

 

Story Time.

Story Time.

All you need is this kind of love!

 

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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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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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The Club

I belong to a club.  One that I did not… nor would ever…have asked to join.  In fact, none of the members want to belong.  But no one asks.  You become aware of your membership when you begin to “wake” from the gut wrenching, horrible nightmare of “losing” your child.

We’re an “odd” club.  We are “thrown” together.  We DO NOT want to be here and by all means…………..we DO NOT  want new members.  “Misery loves company” does not apply.  This type of misery I would not wish on any one.  The dues come at too great of a price.  The price………..your  Child’s Life.

New members joined us on Friday December 14, 2012, in Newtown, CT.  We did not want them and they do not have any desire to “get to know” us,  or our “way of life.”

Each member has a very personal story and has experienced their own “personal” hell.  Many of us can relate to each other and share a similar hell.  Others have nothing in common.  For some, the only thing in common is that we have buried our “Baby”.   Be it their “Baby” died in the womb, never drew their first breath,  spent only a finite amount of time on this earth, battled a horrible disease, battled drugs or took their own life.  All feel like Hell.  

I have been a member of this “club” for two years.     Each story I hear, I think, “what a living hell.”  All unimaginable to those “not in the club.”

The parents and families of these Precious “Babies” who lost their lives at SandyHook are in a Hell that, not even “club” members can fathom.  The Hell that must exist for your Precious Child to have their life taken at the violent, brutal hands of another.  To know that their child experienced unspeakable terror, fear and pain in their last moments and there was nothing they could do to protect them.

This is what I keep thinking since this horrific event.  The horror of their last moments,  how the families will ever “go on.”  My Baby Girl, although considered “medically fragile” died suddenly.  The trauma of her sudden death and surrounding circumstances haunts me,  but if there is any comfort she was in “loving” hands.  There is no comfort that can come from your child’s life being taken with unspeakable violence and horror.

Today, I heard about two or three more “kids” being laid to rest  in Newtown, CT.  My initial thought, those “kids” are someone’s baby.  Don’t they deserve more than that.  What about their name?  How about, if you don’t know their name, LOOK IT UP.  With the same effort and energy being used to sensationalize this horrific loss.   My friend Kathy at Bereaved and Blessed writes about this,  challenging each of us to “remember a name”.  To remember their name, honors their life.

Their names, their sweet faces.  They were someone’s Precious Girl or Little Guy.  When I hear the debates surrounding gun control and mental health (both appropriate) I cannot engage.  My heart and mind keep going to those families who are beyond suffering.

I just think of the rawness and complete numb state your mind and body shift to at the death of your baby.  This raw grief defies explanation.  The constant replays of your last hug, the last kiss.  The unimaginable “what-if” and “if-only’s” that are on a constant reel to reel in their head.

Trying to endure a new minute, a new hour, a new day knowing you will never……. in this life…………hear your child’s voice, see their sweet face or snuggle their baby again.  The panic I know they will feel when this hits.  That feeling of “I must see my baby, I cannot go another moment without my baby.  Yet, you must………you have to………….. you do.

I wish I had no idea what it is like to bury my child.  But I do.  So I am scared.  Scared for the parents and families left behind.  Scared for their grief and pain.  Scared for their sleepless nights.  Scared for their unstoppable, body wrenching tears that will flow.  Scared for the nightmares that will inevitably haunt them.  Scared for the strength they don’t know they have……… or if they have……. just to get out of bed.

Dear Newtown Ct, families,  I am soooo sorry that this has happened.  I am so sorry you have to be in this “club.”

Grief is a marathon…………a perpetual marathon.  Not a sprint.  It is a test of endurance that no one wants to try to pass.  Some members of “the club” do better than others.  Many of us just simply……….endure.  I pray that these families are able to simply…………..endure.

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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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Gilded Tears

Gilded View

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Doing Time

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

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

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

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

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

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

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