Tag Archives: grief support

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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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 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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