Grief is Not Grief

 

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Grief in a word is Difficult!  It is Difficult to explain, Difficult to describe, Difficult to go through, and Difficult to watch someone you care about to go through it!  But grief is a very personal thing, some people think that it is love, others believe it is darkness!  Many people believe that they can fix you, and others like to equate their grief with yours.  If they lost a sibling or a parent, they feel they understand your loss of a child because the grief must match yours, it is the same!  Grief is Grief – right?  No, Grief is not Grief!

I am by nature strong woman; I am not the person who would go to counseling of any kind, because I work through it myself!  When our daughter Megan died, our grief was so overwhelming, so consuming.  We had to stop the life-sustaining machines that were keeping her alive, and it was so incredibly heartbreaking!  I will tell her whole story at another time!  The pain was immediate, it was gut-wrenching, it was all consuming, and it was profound!!  What I remember the most about it – was all I did was sob!  When we were making the arrangements, Keith and I were zombies, the funeral director was speaking, but we could hear no words.  He took us to pick out a casket, and there was nothing any more surreal than having to decide how to bury our child!! He said to us “Of course you want the best for your daughter?” Of course, we did, so he proceeded to show us, three models!  We have the economy model, some sort of heavy-duty cardboard that was $1,000, but you don’t want that – bugs get inside!  The next model was a sturdy white wooden casket that was $3,000, less chance of bugs getting inside or the golden model – a golden casket that was $6,000 with this model bugs will never get in!!!  Well, as disgusting as this was, this was his pitch to us – we could not afford the golden model, we really could only afford the $1,000 model, but the thought of our child not being protected horrified us, so we went with the $3,000 model!  (Just a side note – years later we found out that it didn’t matter one from the other – you cannot stop the bugs) I remember saying to Keith, why are we here??

During the wake, people actually came up to us and would say things like, “you know, 99% percent of all marriages break up after the loss of a child”, or “you now have an angel watching out for you” or my favorite, “you are young, you can have more children”, REALLY?!?!?

When everyone went home, and we were all alone, we discovered that we were both grieving so differently.  I was usually the strong one, let’s get things done, kind of person, but when Meg died, I shut down – completely!  Keith, on the other hand, who was usually the more reflective one, and could sit quietly for long periods of time, he was almost manic, in everything he did.  He was so hyper it was virtually dizzying!  Everyone tended to gravitate toward me because I was the mother, and the “public” opinion was that he is strong, he can handle it!  Sadly the dads are in as much pain, in fact, we were both drowning!  No one within our immediate family or friends had lost a child, we were at a place no one could relate to, no one could fathom, no one ever wanted to be!  And worst of all No One could really understand, they tried, but we were alone in this!!

One day I was so depressed, I could barely put one foot in front of me, I was driving my car and came to an intersection where the light was red, with no car in front of me!  As I approached, I had more than a split second to decide that the truck that would be barrelling through the intersection, about the same time I get to it, would help me to end it all in one clean fashion!  However, at that moment, I only thought of Keith, and I knew that it would absolutely devastate him if he had lost me too!  So, I put my brakes on and stopped at the light!  I decided I would never tell him!

Since neither of us knew how to deal with this overwhelming grief, I thought we should go to a Parent Bereavement Support Group.  Keith did not want to go, but I asked him, and he came only for me!  When we got there, the room was full of people mostly women.  We sat around a table, and each of the parents told their heartbreaking stories.  When they got to us, I told our story about Megan’s life.  The woman next to me had also lost a daughter at 33 years old about two years prior.  She proceeded to tell us that she loved her daughter longer and that her grief was worse since I only had my daughter for only 19 months and 27 days!  I couldn’t believe that this is what she was saying.  How can your grief be more significant than mine!  I started to argue with her, and I was getting so mad, that was when Keith got up and said, let’s go – we never went back again!!!!

Even though it was utterly upsetting, it helped us to realize that everyone grieves differently, and so do we, we promised to pay attention to each other and give each other lots of hugs and space!  However, we did not tiptoe around each other either, if one of us were having a particularly rough day, we would be there for the other, we would listen to each other, and more importantly, we would embrace each other as if the world would fall apart if we let go!!!

We kept the world out because everyone was trying to fix us, with cliches like  “God doesn’t give us more than we can handle,” “God gives us lessons in life and sometimes we won’t know the why only God knows the why”!  These statements only made us angry; they were not comforting.  My reaction was “Fuck God, what kind of a God would give our beautiful daughter the new heart that she so desperately needed only to take her away six weeks later!!!”  Growing up Irish Catholic, I have struggled with God, since I was 14, but now it is magnified since Meg died!  My cousin Laurine, who is a soul healer (I only found out about this after Keith died, because she knew how I felt about things) is trying to help me – but that is a much bigger story!

I was so grateful to so many friends and family, each one, in their own way trying to comfort Keith and me as much as they could.  One day, my lifelong friend Diane called me, she happened to be pregnant at the time with her first child.  I answered the phone, she said, hi how are you? and for the next 45 minutes, I proceeded to cry in her ear.   No words could come out, I just sobbed!  Diane stayed on the phone, and I do not think she said a word, she just listened to me cry!  When I was done, I told her that I needed to go, and we hung up!  Many years later I told her how grateful I was for just being able to cry and her not telling me it will be alright!  She called me all the time and does not remember this call, but it stayed with me forever!

As we were trying to navigate the heaviness and sorrow that we were feeling, I had gotten pregnant 3 weeks after the funeral, I said Keith had a lot of energy!  I knew immediately that I was pregnant (I knew it with Megan as well) and I was freaked out, to say the least.  I was deep in this hell, and I had a hard time grappling with the loss of Meg, and now I was pregnant?!?!?!  I told my sister first because I knew if I told Keith, he would have been happy, and I didn’t know if I could handle that!  I think I cried on the phone for 20 minutes before I could get it out!  I really did not know if I wanted to keep this child, I was so distraught, how can I love another child like I loved Meg??  How horribly unfair to her memory, if I have this child!!!  How can I even go through this pregnancy with all the angst and sorrow I feel!  And the most important of all, since they could never really explain to us how Megan got sick, I was utterly stricken with fear, that this baby would be ill as well.  When I finally told Keith a few days later, he said to me, well, we have some time to make a decision, let’s just take it one day at a time, we still haven’t even taken the test yet, it is too early!

Two weeks later, we were sitting in the living room as the timer went off, and we both sat there not moving.  About a half an hour later, we got up and walked to the bathroom, and there it was, positive!!!!  We both started to cry, and I said I don’t know if I can do this!  Keith said to me can I tell you what I have observed in the last couple of weeks?  I noticed that you stopped taking the Ativan, (the Dr. gave it to me to help me sleep), I noticed that you cut back on your tea intake (I drink massive amounts of tea), and I also noticed that you are eating better!!!  I sat in silence for almost an hour letting it sink it what he was saying, and finally, I said, ok, so I guess we are having a baby!  It was hard to smile or feel joyous, but I did feel relief!  It was still terrifying, the birth was a long way away, but as we stood together we knew we would get through this – together!

On August 10th after an extremely stressful pregnancy, and going through every possible test at that time, I gave birth to our beautiful, healthy new daughter, Kellie, and even though our hearts were still with our Megan, we learned to live with her always in our hearts.  Kellie grew up always knowing about Megan.  Keith’s son and daughter were 13 and 10 at the time and lived in Florida, but we saw them twice a year.  They got to know Meg and understood that she was sick, but when Meg died, and even though Keith so desperately wanted them by his side – it was impossible to get them up for the funeral! But it deeply impacted their young lives as well, especially Justin!

As the years went by, one day I decided to tell Keith about my encounter with that 18 wheeler, and he looked at me and started to cry!  He told me the only reason “I stopped myself from ending it all, was because of YOU – I knew that I could never do that to YOU!” We both just stared at each other for a really long time, we could not believe that we both had these thoughts and never told each other until now!!  We talked into the night, and we knew how so very lucky we were to have each other!!

On February 8, 2018, exactly 26 years, three months and 16 days, or a total of 9605 days, after we lost our beautiful daughter, my favorite person in the entire world, the pure love of my life died.  But this time, I was grieving alone!  Of course, everyone around me was grieving, my children, my family, and our friends.  But, this has proven to be very lonely, very scary and very debilitating!

The first night after Keith died, I came home and sat on my couch, and I really did not move for nearly 10 hours.  I did not turn the television on, I just sat there, I couldn’t move, and I didn’t want to move.  Kellie was the opposite, just like her dad, she could not sit still.  She actually said she read something that said that people grief opposite their personalities.  I immediately knew that was right, having been through what I thought was my worst nightmare and now grieving again, I could feel some of the same emotions.  Almost every night, I did the same thing. I really did not want to speak with anyone, I didn’t want anyone to come to my house. I just wanted to be alone, and for the first time in 31 years, I was completely alone!  I didn’t want to speak with anyone, and if I did only through texts, and that was only if I felt like answering.  During the day, I had to work to keep the business going, but during the night, I locked the door and shut the world out!  My beautiful sister-in-law, Laura had lost her husband 18 months earlier, and she became a wonderful guide for me to at least help me to know what I might expect.

Sadly 17 days after Keith’s death, a friend of mine in town, lost her husband.  Mona’s husband Jim had cancer, but he was done with Chemo and doing so much better,  Mona, Jim, and their children began to feel safe to start thinking of the future again, but then tragedy suddenly struck, Jim after a complication following emergency surgery, died!!  Stunning!!!  Just as Mona came to Keith’s wake, I went to Jim’s.  It was at the same funeral home, but I knew that I needed to be there for her!!  My heart was breaking for her because I knew exactly where she was at this moment in time!

I was able to keep myself very busy during the day, taking care of matters and work, and just trying to keep things running.  This went on for 6 weeks until I decided to close the business because I did not, and more importantly I could not do it without Keith!  That first couple of months, I was in an automatic mode if you will, I was heartbroken, but I was moving. However, once I stopped, I was overwhelmed with the gut-wrenching pain I was feeling.  The heaviness began to set in, the sadness and pain were profound and insurmountable.  I was completely alone!!!  Of course, I have had so many loving people around me, the kids, my sister, cousin, family, and friends, but I did not want anyone around.  I didn’t want to speak with anyone, it took too much energy!  Everyone wanted to know if I was ok, I was not, but I said I was!

For the first month or so I tried to be active, getting up, taking a shower, looking for a job, cleaning my house, taking care of Bailey!  But as the days and months went by, those activities became quite a struggle!  I was not sleeping, how could I, my lover, my partner, my friend is no longer by my side!!  He laid next to me for the past 31 years, and now he is not there.  My bed is empty, I still lay on my side of the bed as if he is there. I would wash my sheets and find it so bizarre that I am cleaning a pillowcase for a pillow that was never laid on!  Sometimes I cry myself to sleep, and other times I just lay awake afraid to shut the light off because I have become acutely aware of how alone I am!  Even with Kellie in the next room!

Keith and I were truly one!  We loved our togetherness!  We worked, slept, ate and went to the grocery store together!  We would work all day together, get in the car, get home and walk Bailey!  We were not freaks, it just so easy for us to be together.  We were able to give to each other like no one else could!!  Life around us was hard, very hard, but our life together never was!!  That is what makes this so difficult for me to move forward, the hardest part is learning to live without him in my life!  The hollowness, the profound sadness, the future feels so dark and bleak.  It is so paralyzing and difficult to leave the house to even look for a job.

Many times, I would wake up and genuinely wish I didn’t wake up.  I would get up, take a shower and decide that I was going out to look for a job today!!!  But instead, I would take a shower, go sit on the couch, and only get up to take Bailey out!  Poor Bailey, I was walking him 5 to 6 miles a day.

So many times, people would say to us over the years, that they could not imagine losing their child, and it is true that there is nothing like it at all!  But I have lost a child and my husband!  I have lost half of my family!  When Meg died, we had each other to hang on to, we supported each other, we cried to sleep together, we cried during the day together, we held each other up!  We were the support for each other to get up, get dressed, get going!  Now there is nothing!  My sister cannot help me, my cousin cannot help me, my children cannot help me!  I am alone! I do not do alone well, Keith loved his alone time, me – not so much!  Now I am always alone, even when I am not!  I have had a lot of love from family, friends, and acquaintances that tell me that Keith is still with me, but that is not a comfort, it makes me angry!!!  He is not holding me, he is not talking to me, he is not comforting to me!!!  All I feel is the emptiness. I have become a hollow shell of myself, I have lost myself, my soul, my confidence and I really could care less to find it!  I even started thinking that I was unable to take care of Bailey, and began contemplating putting him up for adoption because it was just so hard!

I tried to go to the grocery store, late at night so I did not have to see people.  One of two things would happen, I would see someone and they would look down, because they did not want to speak with me, or they would come up and hug me and say things like, it is time to start cheering up!  Or yes, unbelievably, you are young Keith would never want you to be alone!!!!  REALLY People!?!?!?!

Speaking with Mona, I think has helped us both, because I know exactly where she is going, like no other.  We started texting, but then went to lunch and would just cry, and listen, and because NO ONE else knew how we were feeling, at this very moment.    Mona’s grief is the same, yet different than mine, she has three children, two adults and a 13-year-old daughter at home that needs her mother.  Mona needs to be strong especially for her.  Yes, she will mourn together along with her other children, but she cannot sit on the couch and cry all day, her daughter needs to go to school, and after-school activities and go to sleepovers.  Mona’s oldest daughter was getting married in May.  I said to her OMG!  How are you doing this???  I cannot!  I so admire Mona, she has strength well beyond me!

Sure, many people have lost their spouse or significant other, but their experience is not mine.  And if it happened several years ago, you can remember how you felt, and it brings back the pain, but you are in a different place.  Sadly soo many people I know have lost children since Meg, I would never say to them, I know how you feel because I do not!  I lost my child, I understand that, but I do not know how you feel.  I can reach out and say – I am here if you need a shoulder to cry on!  I can possibly guide you, but I do not know what you are going through!  My friend Patty had lost her son, 10 years ago, we had been out of touch for many years, and because of Facebook, reconnected.  I tried to guide her but did not want to in any way diminish her pain.  We were in two different places, but still shared the pain of losing a child.  My sister-in-law Laura has been my beacon for what I should expect, and for the most part, she had to relive her own heartache, yet Keith was her big brother, she is in her own sadness, and grieving differently than I am, but yet very similar!

Last night, my stepson Justin called, and after about a half an hour of me being emotional about not finding a job, he said to me,  “what has happened to my strong, confident stepmom? The woman who picked herself up every single time and became stronger and more confident!!”  I told him she died, he said no she is hiding!  It was kind of a kick in the ass, bringing me to reality!  I realized that he was right, although, I will not be flexing my biceps anytime soon.  It really made me begin to stop feeling sorry for myself.  I realized that Keith would be so disappointed in how I am acting!  Today, I slowly started to move in at least a forward motion.  Hopefully, as I put one foot in front of the other, and yes with Bailey by my side, the darkness will lighten up, and the hollowness will start to close!  I have been a Phoenix most of my life, the Phoenix will rise again, but I truly hope this is the last time I have to do this!

 

October Blue (Why Take The Children)

 

 

Grief is a bomb
It never stops exploding
Fills our worlds with chaos
Unrelenting and uncaring
Constant burning flames
Entering out souls
Our hearts
Reminding us how weak we are
Today I remember myself at my weakest
My baby girl
Taken away on this day
A beautiful shining star
Extinguished
It’s so unfair
I was supposed to be her strength
Hold her up with all my might
I held her so hard
I tried so much
I believed so strong
Poured my entire soul into my baby
Yet I failed
Still Megan I hold you in my heart
Every aching second
Of every single day
Time never passes
Not one single tick
Without a thought of you
I still don’t understand why
Many have reasoned
That you have gone with God
My baby is an angel at his side
But what need has any god of a child?
Who but the cruel and ruthless
Would erase the innocent
Not any God I can accept
We needed you here
But this isn’t about me
This isn’t about God
It’s about you
Yet still people have suggested
Perhaps God broke me to be rebuilt me
I never asked to be rebuilt
If true he took from my inner self
The most important part of me
The most true and honorable piece of me
My attempt to be her Dad
Is not unconditional love the most true?
But their God left a gaping abyss
An endless hole in my heart
No way to fill a hole that has no end
Yet on some arcane level
It was losing you that brought me to my awakening
Suffering…
Suffering is what made me who I am
All that remains now
Is my memory and
An existential mystery forever unsolved
An unanswered question asked for eternity
Why take the guiltless children?
Used as an innocent pawn
Why my baby?
She was not born to us of mere flesh
But of a longing of life
A desire to spread her wings and soar
An opportunity to exist
A chance to shine bright
Why was she deprived of life
Deprived of her own Goddam fate
Taken from us in a single morrow
I could drown in my tears
So many have I cried
Be lost in the light
So dark had my soul become
Been lost forever in the pain
So deep was my anger
Yet each day I must rise
Without your smile
Each day goes on
Without you
Everyday I struggle to wake
For without my child
I had no reason to exist
I would gladly perish
To give you a shining chance
One chance at living
But if living means this pain
I wish it not for you my Megan
For those who I share love
I continue on wounded forever
Now every earthly rotation hence
October comes at me hard
Stalking me like a villain
Reminding me of it’s power
The dominance it holds o’er me
Even with all its beautiful colors
With it’s clean crisp morning air
October darkens my doorstep with gloom
Obscuring my memories of what could have been
My Megan
Leaving me scarred
Tattoos carved deeply in my heart
All I have left now are those memories
Of a profound innocent loved shared
And the pinwheel above your new room
Which spins wild upon each visit I make
Each silent visit
Though I want to join you
I can’t sleep beside you yet
For there are others that still need me here
So sleep now my “Little Little”
I can celebrate not this October
For our memories can ease our pains
Or they can devour us
I hope for the former
The anniversary this month brings
Is forever unwanted
Yet this horrible pain
Is all I have left……
I never sleep during October
I only cry

Live and Love in Peace

THE WORST DAY OF MY LIFE

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Twenty-six years ago today

A natal occasion

I hugged a star

Basked in her luminescence

Was swathed in her love

The moment you were placed in my arms

I swear baby girl I saw you smile

A grin that warmed the soul

Eyes that lit the world

So full of charms

A brand new life

Of sugar and spice

Best days still to come

 

But destiny can take a cruel turn

Because on a Sunday evening

We returned to the halls of healing

The frigid chill of that winter night

Bore the frost of icy cold news

Words spoken through a surgeons mask

Six words that would change our lives

Six words reverberating through time

“Your daughter needs a heart transplant”

Denial for a second

Then a surrender to our dread

We held each other and wept

When I thought to myself

This is the worst day of my life

But I was wrong

 

Because the next morning I woke up

Reality continued to agonize

It wasn’t a dream at all

And horror will pace through our lives

But Megan wouldn’t let that be

She eased a painful smile my way

Though she had yet to learn to speak

Her arms said hold me Dad

Her eyes talked reassuringly

Everything will be okay

Stop worrying about the worst

Each day can be our first

Together we will fight

To make our world all right

We had to get strong we had to survive

Do whatever it takes to keep her alive

To believe better days yet to come

No longer had I suffered the worst day

I had tomorrow and today

 

 

Until the day we feared would come

Our tears witnessed your final breath

In one unending second you left us

An unending second I still live everyday

Our baby gone

Ripped from our lives

Stripped from our souls

Never again to lay her head on my chest

Or to hear me sing her to sleep

The day her heart stopped

Our world mutilated

Pain cut a profound furrow

So deep never will it be filled

Again I said to myself

This is the worst day of my life

But I was wrong

Because the next day when I woke

You were still gone

The pain hadn’t gone away

You were still no longer here

That was the worst day of my life

Until the next day

It hurt again

Forced to continue without you

Each new day seemed worse

Each new day I knew I’d wake

To the next worst day of my life

 

Time doesn’t heal it numbs

As always this day causes me to reflect

I philosophize on the worst day

What would be the worst possible day ever

As an idealist, a romantic, a philosopher and a poet

I formulate my answer

I have always believed that love could cure anything

Love will always be there when I need it

Love would always be enough to carry my soul

That love will see me through

Love is our strength

So the day I no longer have love in my life

That day I will have nothing left

That day I won’t want to wake up

Then that day will most certainly be

The worst day of my life

 

I hear the phrase “it was the worst day of my life” and consider the reality. A phrase used to describe an embarrassment but also when recalling a life changing event like the passing of a loved one. As horrible as that day may have been it‘s not really the worst day of your life, because the following day we still have to wake up and they’re still gone. That’s the worst day…… Until the next one

Our lives can be defined through points of profound joys and profound losses. The losses can leave gaping holes in our purpose, the hurt and anger build up more each day. Sometimes we counter it with a good cry, or a long walk, or through creative energy, painting, drawing, singing, playing an instrument, or writing. When we can share the energy with true friends they know not to judge, not to offer their own beliefs but accept our offer of love as a gift of friendship and just let us know you’re there, you hear us, and you remember. Call your Mom, your Dad, Sister, Brother, Cousin, Friend and just say hi. Peace

 

Bye Bye Baby

baby

 

Beautiful Feline

Our Baby

My little girl

Said good-bye

A world of sadness

Yet a thank you in her eye

Leaving sweet memories

Of her life gone by

 

Right now

Across the world

In many a grave

Some marked

Some not

The souls of the billions

Stir slightly

Shifting

To make room for one more gentle soul

For “baby”

For her we cry

Because Nature keeps subtracting

As love comes by

 

Some think it pathetic to see

An old man reduced to tears

But I don’t care

Disease is pathetic

This feeling is pathetic

Death is pathetic

And life’s not fair

Good Bye Ba

 

Tears On My Keyboard

tears

Why did I write this? I actually find the mundane moments of life to be among the most interesting to write about but some moments are so profoundly etched into our beings it begins to define us. This is about one of those moments and as hard it is to write and most assuredly will be hard to read the moment also defined an act of giving that effects many lives. Organ transplantation. A word about the title. As I write this story I am at my most naked and vulnerable self, opening and sharing the most profound moment of my life as I sit at my sanctuary, my refuge, my keyboard. This is the story of the last moments of my baby girl Megan’s life and it is guaranteed to have me crying into my keyboard as I relive it in words. So get a box of tissues and be prepared because you about to hear about me and my beautiful daughter, Megan Laurine Jaret.

There should be some cosmic universal law stating that we should never have to be reminded of the absolute worst moments of our lives but unfortunately there isn’t. There are constant triggers that create avalanches of harsh memories with corresponding emotional outpourings thrust upon us. A case in point was the memories stirred up in anyone who has had the disturbing experience of losing a loved one during an episode of Greys Anatomy a few weeks back. The end scenes focused on Derek being at the point of no return from an accident and his wife having to be there and witness his last breath but to also have to be the one to make the decision. A decision born of the purest form of love there is, an act of both total unselfishness and masochistic self-flagellation. The decision to allow someone you love who is in intolerable pain with no hope of any semblance of real life go. On it’s face it was a good television emotional moment but having had to go through a similar experience with my nineteen month old daughter the moment was converted to an entire tissue box outpouring of tears.
I’m not sure if this will be therapeutic for me or send me into a fugue but I do know that by the time I’m through I’ll be typing the story in a keyboard full of tears. So in an attempt to bring organ donation to the forefront I am sharing the story of those last moments. Load up on Kleenex. This is in honor of Megan, my Little Little, my Mighty Meg. A baby girl who gave so much more than she received.

It had been a long road. Megan became sick at only three weeks old. After three doctors visit and one night of Meg in constant pain we made our first trip to the ER where she was seen by a cardiologist, Dr. Milton Prystowski. He notice an irregular heartbeat and before we knew it Meg was having a spinal tap. She was diagnosed with an enlarged heart. She was put on a medicine regimen and sent home. Six months later on an otherwise serene Sunday morning she went into cardiac arrest in her crib. We immediately gave her mouth to mouth, called the ambulance and within minutes she was on her way back to the ER. We jumped in our car and flew up to meet her but she wasn’t there yet. We would find out later that they had to stop and use the defribulation panels on her. After a grueling fourteen hours she was in resting in NICU. The sight of seeing your baby girl in a tiny hospital crib with an IV in the tiny head was devastating, but not as devastating as the news. Her only chance of survival was a heart transplant.
Megan was transferred to a trauma center and eventually to a children’s hospital while we got schooled on organ transplantation. The process of procuring organs for transplant is cold by design to assure the right organ gets the best chance at life in the right body. Blood match and size match where first, geography was considered as organs don’t have a shelf life, and finally the most needy, or who is the closest to death. This prevents people of higher income to snatch away organs and makes it fair and ethical. Now we had to contend with the struggle of conscience knowing someone else’s child must die for Megan to live.

From there things got more difficult. Meg had a seizure in the children’s hospital in Philadelphia. Because the neuro-doctor determined she would not live a productive life due to slowed brain activity they removed her name from the transplant list. Undaunted Maureen got her a physical therapist and the two of them worked hard and got Megan performing tasks and tracking, or following things with her eyes. She was put back on the list after being seen by the transplant team at Columbian Presbyterian in New York. After a few months we got the call, a heart for Megan had become available and the scene was set. Her transplant was successful but it still required a long rehabilitation in the hospital. After over a month of living in the hospital with her we were finally able to take Megan home and she laughed and walked and despite being behind in dexterity for her age she was progressing. This is where the happy part of the story ends and becomes the worst moment of my life.
After eight glorious days watching Megan get stronger by the moment we were hammered with another set-back. Something was wrong and Megan’s health was suddenly deteriorating. We rushed her back to Columbian Presbyterian where she was re-admitted and taken into surgery. While in a waiting room we heard an announcement on the PA system calling for STAT, which we had previously learned was Latin for statim, a call for immediate emergency. Maureen and I looked at each other with deep concern because without knowing for sure what the call was we both knew in our most primal gut feelings it was a desperation call meant for Megan. Our baby girl was about to end up back in the Neo-natal Intensive Care Unit, a place we had become far to familiar with.
The first night there one of the babies next to us passed away and I witness a father comforting his teen age daughter who had fallen apart at the news that her child had lost his struggle. I remembered seeing the intense pain in his face, having to contend with losing his grandson while having to remain strong to comfort his daughter. The pain and love in his conflicted emotions were etched deeply into a troubled face, that wasn’t permitted to show it pain despite the profound depth of torture he was experiencing internally. It was very disconcerting and a tad prophetic as I wondered if I was going to assume a similar role if everything goes to shit. I pushed it out of my mind because we had agreed at the very start with Megan that no matter how slim the thread of hope was we would each grasp it firmly with both hands and hold it tightly to our hearts. Our closest friends and nearest family gathered to be by our sides to offer support. It wouldn’t be long before we would find ourselves desperate for that support.
Megan’s health had become a see saw of emotion, one moment weighing hopeful the next weighing cautious and slim. The moment came that I can only imagine that everyone in the healthcare field must dread. The time for honest and frank discussion about where a patients health had gone and the real and practical possible outcomes. We had become far too familiar with previously foreign terms like catastrophic illness, immunosuppressant, and Cardiomyopathy as the physicians often spoke to us in ‘Doctorese.’ But none of those were what the doctor had in store for us this time. There is not a thing in the universe that could prepare you for this sort of news. We were told directly and honestly that Megan’s outlook did not look promising, that her chance of survival was getting slimmer by the hour and we should begin preparing to make a decision. Once again we had our emotions splattered on the wall. The possibility of losing Megan had become earth shatteringly real.
They monitored her health but there was a heavy sense of the worst that could happen about to be happening. Megan’s cardiologist was choking back tears as she gave us the grim prospective and let us know that there was no longer anything they could do and as hard as it is the best thing for Megan was for us to let her go. We assured her we understood and went in to see Megan. When I approached Megan she was once again attached to an assortment of tubes and cables. We could the whirring of machines and the beeping of her heart monitor. As I walked over to Megan she looked up at me and communicated with her sad and profoundly tired eyes. With those eyes she said, “Daddy, I’m so sorry. It’s just so hard to go on fighting. I’ve been trying so hard to fight for you and Mommy but it’s too hard, I’ve been through so much and I’m not sure I can fight anymore. I’m so sorry Daddy, I love you.” It wasn’t words, but I fully understood anyway. I bent low to her face, kissed and said, “it’s okay to let go baby girl, it’s okay. We love you so much.” It was the hardest thing I ever had to say or do.
I’m not sure if it was to further torture myself for allowing Megan to die or to take my mind off what was really happening but I looked up from Megan and watched as the doctor responsible turned of all the beeping machines allowing a grotesque silence fill the room. I felt sorry for him, I could see in his twisted face that doing this was the worst possible job in the world. Then it occurred to me that I was wrong about that, the worst possible job in the world is being a parent and having to say goodbye to your child for the final time.
As promised, my keyboard is overflowing with tears re-living that moment. I will return in a day or so to complete my final note and then a few more days to garner enough confidence to post it. Peace……..

Epilogue

Today 21 people will die waiting for a transplant.
On average 10 people a day are added to the waiting list
Donating your organs can save or make better 10 lives

Having become part of the transplant community I have come to know some successful transplantation families that became filled love and deep gratitude to the donor. I met incredible donors and donor families, and was fortunate to watch as Maureen became an altruistic donor on a friends behalf which ended up in an eight kidney donation chain effecting multiple families. Organ donation is a cause we both believed in long before it became a reality for us and the time we spent with Megan after her transplant only serves to motivate us further. Please consider becoming an organ donor if you’re not already, and if you are thank you. There are a number of organizations you can look up for more information. UNOS, Donate Life, Gift Of Hope , among others. You can also go to http.orgndonor.gov

Final thought
People often say it must be so hard losing a child. I think painful is a better way to describe it, and like most pains it never fully goes away. You always retain an echo from such profound pain. I think the hard part was having to hear from so many well meaning but misguided attempts at putting it in perspective for me. No one really knows what to say or how to react to you. They awkwardly attempt to help me make sense of it but when your in that much pain making sense is just an unreal concept. It’s my pain and if I refuse to find deeper reasoning or understanding then let me. Don’t assign your concepts of coping to me. When a child dies telling the parent that it was gods will, or that she’s with the angels now does nothing to apply any sensibility to the loss. It isn’t something I will get through, it’s a huge sack of pain I carry everyday. Some days the sack is far heavier than others, but I carry it none the less. Its pain and like any other pain it needs to be treated. It will never be cured but it can be managed to a degree. To my thinking life is a long series of pain and relief, joy and sorrow, happy and sad. Opposites help us to appreciate the depth of each emotion and I just hope that my relief, joy, and happy moments far outweigh my pain, sorrow, and sad ones…….One World, One Peace….Save a life, donate your organs

Mighty Meg Would Be a 25 Year Old Superstar Today

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Today is my daughter Megan’s birthday. Had she survived she would be 25 years old. I had a few nicknames for her, Meg, Meggie, The Megstress, Meganator, Daddy’s Little Girl. Of all the names Little little was her favorite made her smile everytime, but Mighty meg was her most descriptive. Mighty Meg suffered a heart condition from birth and fought a valiant fight right from the start. Megan needed a heart transplant but organ donation, especially back in 1990, was extremely hard to come by. The need of her transplant was a soul searching bittersweet ordeal. The thought that someone else will lose their child before Megan could receive a heart was immensely painful both as a parent and as a human being. Meggie eventually did receive a transplant however with a compromised immune system she caught the virus that ended her short life. Mighty Meg spent way too much of her 19 months and 17 days in hospitals but through it all she remained brave. I didn’t even know what brave meant until I was like six, but Mighty Meg had an instinctive braveness about her. When her Mom and I were burning inside from the torture of watching as our child was jabbed with needles in search for a connection to a tiny vein she squeezed our fingers and got through it. Even after it was over and her Mom and I were still reeling in the tears Meg gave us a smile. She wasn’t happy, relieved maybe, but somehow Mighty Meg knew we needed her smile. That’s how Meg was, a mighty force that even in the darkest of hours managed to make us smile. So today I celebrate her birthday but not as a sad occasion, I don’t want to mar the memory of her birth with negative energy, but with fond remembrance as a tribute to what she gave to us in her short time here.
I know this sounds strange but I often wonder if species other than humans experience nostalgia like we do. I really don’t think that’s too far fetched because we now know that elephants experience something similar to empathy or sympathy when one of the herd passes on. Films have documented what can only be described as communal mourning in elephant ritual. Youtube is brimming with video’s of elephants as well as hundreds of other animals acting more human than humans. You can watch various animals interacting in loving ways with other animals or with us. I’ve had dogs and cats myself that were capable of giving and receiving love despite what any expert may say. Love can’t be studied in a textbook or laboratory, it has to be experienced. So I wonder do animals go back to the jungle where they were born, or the tree’s they played in when they were young, and have an unexplainable sense of happiness just being there? Maybe those elephants credited with never forgetting feel emotional tie ins with experiences such as birth. Can Mama elephant remember each of her birth’s fondly? Why not, many of us who have witnessed the birth of their children remember the delivery. We associate emotional events with many things, we can hear a specific song and be transported back to our first love. We do love our nostalgia. I mean look at how we celebrate our own birthdays. Congratulations to us we lived the length of time it takes the earth to revolve around the sun once again so lets have some cake and blow out some candles, that was quite a feat.

Despite the fact that each and everyone of us has a natal anniversary if we live another year we find it reason to celebrate our accomplishment. We see the date of our birthday and it triggers a comforting feeling in us perhaps because that day marked our entry into the world. It’s actually quite quaint when I think about. We develop bonds whether good or ill with events that mean something to us on an emotional level and assign it an anniversary. Today that emotional association for me is simply the date February 26, the day I witnessed the birth of my daughter, Mighty Meg. This would have been her 25th birthday and I find myself as I do every year wondering what she would have been like if she survived. In my logical mind she can never age past 19 months because that’s how long we had to enjoy sharing her life. So today I want to share my recollections of the day of her birth, the day Megan Laurine Jaret entered into our world. As is often the case especially with me, a profoundly sad emotion can be tempered with an upbeat and humorous memory to ease the sorrow of the heart.

It was near the end of February and Megan wasn’t due for another two weeks. It was so cold it felt like March was making a test run of it’s obligatory coming in like a ferocious cold lion. A bitter cold Northeast coast icy wind kind of lion. I was working in midtown Manhattan and Maureen and I lived across the Hudson River in Jersey City. We were a young and hip New York City couple so of course that’s where our child would be born. Being well versed in the Lamaze method of childbirth we were cool, calm, and collected when the moment arrived. Maureen called me from our 34th floor apartment in Jersey City to inform me that her water had broken. She announced it very calmly so I responded in typical suave male fashion. I freaked. After rapid firing all the proper lightning round questions it was agreed that the contractions were sufficiently far apart and time permitted that I was able to come get her. Once home we would have plenty of time to organize for our trip to New York Hospital. I left work and got on the PATH train for Jersey City.

By the time I got home the contractions had become impatient and we were at the point where the doctor told us to go to the hospital right away. So now this hip young urban boy had to head back to the city he just left with his pregnant and dilating wife, but this time in style, no pregnant wife of mine will be taking the PATH train! I called for a taxi then proceeded to get all of our “What To Expect When You’re Expecting” ducks in a row. Hospital bag was already packed waiting in the closet for the big call. A change of clothes, some bathroom items, a photo the instructor called the focal point so Maureen has something to take her mind off the mind blowing pain ahead and a snack or two. In recalling my childbirth class training I asked Maureen if she wanted me to make some Jello knowing she would be hungry after a hard day of labor. My uncanny ability to reason under pressure was noted, “Jello? Are you fucking kidding me? Jello?! I don‘t have time for any fucking Jello!” I thought about explaining that by the time we get through with all this child birthing stuff she might be hungry and could at least drink a semi set up gelatin but then remembered the smoke coming from her eyes when she just recently inquired if I was “fucking kidding“. I opted to remain silent. Maureen headed into the bathroom I assumed to use it one last time before leaving. Our phone rang and it was the front desk informing me our taxi was ready and waiting outside the door so I called into the bathroom, “Babe, taxi’s here, we gotta split.” Thankfully her voice had returned to that sweet sexy rhythmic fashion, “Just a few more minutes, I’m putting on my make up!” Admittedly being male I was unaware of the profound need of proper make up and asked why in the world would she needed to put on make up right now, I mean we are on the way to have a baby not a night out dancing?” Satan voice returned, “I said I’m putting on my make up and I’ll be done in a fucking minute.” I considered returning the volley with a “Oh so you don’t have time for Jello but you have time to put on your make up”, but the amount of stress she had placed in the “I’ll be done in a fucking minute” combined with my love of life alerted me to the total non necessity of such a statement so I opted for a weak, “Okay Babe, but we gotta hurry, Taxi’s waiting and you know how slow our elevator goes.” I took the silence to mean nothing more need be said by either party.

Okay, I’ll admit she looked great but I still puzzled over who would be seeing us. I could also sense nervousness in her which assured me I wasn’t alone in my panicked approach. Once I explained to the driver our situation the wide eyed look on his face assured me that now the power of three was rocking in nervousness. I can only imagine the thoughts rippling through his mind, a delivery during a delivery and all but to his credit he assumed control of his situation, got us both safely in the back of his New Yorker (ironic, right?) and began the trek through the Holland tunnel. The driver was quite animated and calmed us with his talking telling us about his children and the pregnancies therein. We were in the Holland Tunnel when he showed the first sign of concern. “Oh oh, some kind of jam ahead.” My heart sunk below the seatbelt and panic laughed proudly at how easily it got me shaking. “Don’t worry I’ll change lanes, if we get pulled over we’ll probably get an escort.” He crossed the solid lines a number of times not giving a shit about laws and calmly got us through the tunnel and onto the FDR like the pro he was unassisted by the police. When we pulled up to the front of the hospital a nurse was waiting already with a wheelchair because the driver had alerted his dispatch. I jumped out running around to Maureen’s door where the nurse looked at me with deadpan stare, “Can’t you read? All deliveries in the rear.” She pointed to the sign which I stared at vacantly, “Only kidding honey” turning to another nurse said, “This one here is in a daze, this should be fun.” They pushed Maureen down the hallways and I followed like a lost puppy dutifully shouting out breathing time signatures when contractions warranted. She was wheeled into a triage room where they set up the machines for her vitals, “Better call upstairs and get a room ready, we have a woman booming here!” The stand up comedian nurse showed me how to read the tags determining the severity and frequency of contractions and in seconds we were out of triage and into a birthing room.

Any sliver of confidence I had was shattered when I heard another woman in the throes of delivery screaming in pain in the next room. All the way through the room! I ripped open our hospital bag, “Where the fuck is the focal point?” I could hear Maureen breathing “he he he hoo, he he he hoo” and was relieved when I found the photo she chose for her focal point. “Are you fucking kidding? I don’t want a picture I want this to stop.” I had begun to think everything in the book and Lamaze class was total bullshit so we went off script and into our own rhythms. We looked at each other, read the contraction sheets, and when I figured out how to tell her they would be coming soon and they would be ending soon it eased the tension. Maureen just breathed whatever signature she wanted not listening to any command from any non medical professional at this point. The contractions came in waves, some hit the shore much harder than others. One wave in particular was so intense Maureen’s hands gripped my arm like a tourniquet, so tight it cut of circulation to my entire body. It would become a week long temporary tattoo of a blood red tribal symbol of a ten finger vice grip attack. Trooper that I am I whimpered silently. At 4:10 in the afternoon little Megan Laurine entered the world and her beautiful tiny face lit up the birthing room with joy. All the pain and discomfort of the past few hours was forgotten. Well mine was, Maureen was still in pain and discomfort, but she endured it with a smile when she held Megan for the first time.

So that’s the sweet part of the memory, the memory I choose to remember on her natal anniversary, even though like every other year I still wonder what she would have been like. I have no doubt she would have been a fantastic big sister to Kellie and would have her masters in something by now or she would have some impressive title. Maybe she would be the CEO of some big corporation just to piss me off. One thing she would have been at 25 for sure is a deeply loved child who could do or be anything she set her mighty mind to. If you are an organ donor we thank you from the bottoms of our hearts, if you’re not we hope you will consider becoming one. Recycle life.
Happy Birthday Little Little, I love you.

October Go Away

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Megan “Little Little” Jaret… Did you ever know that you’re my hero

How beautiful the tree colored lanes
Vividly vibrant and richly chromatic
Crisp morning air filling up incognito
Evenings chill settling in so dramatic

Innocent faces in Halloween masks
Bags full of trick or treat sweetness
That was the October that I once knew
In peaceful autumnal completeness

But on a precarious cold day one October
Hearts were wrenched straight outta our chest
Our baby girl taken away in an ambulance
Left us profoundly confused and depressed

After one year of hospitals doctors and testing
Another October morn came around to betray
That day all of our hopes prayers and dreams
In one harsh second were all washed away

Much too distinctly I remember that moment
So clearly do I envision the sad in your eyes
Our final day of all the tears shared together
Etched in regret cried our final good byes

We knew that your pain was monumental
It made our hearts overflow with dismay
Letting go was so dramatically painful
October won’t you just please go away

Cruelly each year we are choked with a flashback
Of the worst possible days in both of our lives
The harshest month of the year is upon us
With merciless regularity again October arrives

Filled with thirty one days of emotional torture
We attempt to force our misery down underneath
But something draws us to that one vivid morning
We stared speechlessly numb and unable breathe

A parents reflection should only consist
Of holding hands with unsolicited smile
Not the burden of carrying recollection
Of bitter days from the loss of their child

Time now passes by with tremendous effort
Relearning how to live and to manage the grief
But all of our bitter October anniversaries
Are far too short on sparing us any relief

So October please hurry past without haste
It hurts us both all this month every day
If mercy is real please let it be tangible
October won’t you just…….. go away

Love you Mighty Meg
Peace