Birthday Boy - Forever 26

It'is my dead son's birthday.  Today, Nickolas would have been 35 years old.  I cannot imagine what it would be like to have my son here with me today.  I wonder what we would be doing.  I wonder what he would look like.  I wonder if he would be married yet. I wonder if he would have any children of his own? I wonder if he would still be working as a chemical engineer.  I wonder if he would still live nearby.  I wonder if he would still like to eat great food and hang out with his friends.  I wonder if he and his sister would still be best buds.  I wonder if he would still like playing guitar.  I wonder if we would be able to play guitar together.  I wonder if he would still be going to concerts. I wonder if he would still be an Oriole fan.  I wonder if he would still be working with EWB and traveling the world to help others in need.  I wonder so many things. All pointless...I will never have the answers to these questions.  Now I wonder if it will ever stop hurting.  I wonder when I will stop being so sad all the time.  I wonder when my life will really implode.  I wonder how much longer I can keep searching for meaning in a meaningless and tragic situation.  I wonder when the yearning to see my son again will stop.  I wonder when the void that his death has left in my heart and soul will ever be filled.  I wonder why I so rarely dream about my sweet boy.  I wonder why he never comes to me.  I wonder if I will ever feel joy in my life again.  I wonder why life has to be so fucking unfair to so many people.  I wonder when the anger, resentment, and bitterness in my soul will consume me and put an end to this misery.  I wonder who cares about this and if they do care what can they do about it.  I am tired of wondering.


Starving 

Death brings a feast of
heartache and melancholy,
bitterness and pain. 

© bigD 2017


Child loss is a tortuous death.  (Six word story)

© bigD  2017

Eight Years Longing

Battered (Haiku)

Eight years without you.
Melancholy stains my heart
darker shades of blue.

© big D 2017


Sorrow is my constant companion now.   (Six Word Story)

I have nothing to say.  Is that pathetic?  I am no better today than I was eight years ago.

I am bereft.  I am grieving.  I am without hope.  I keep my "feelings"
hidden.  Who wants to know what this feels like?  This blog is private now...no one will see it.  No one really sees me.  Do they?  If they did they would be much more concerned.  What does it matter?
It doesn't.  Many days I think that if this is all there is then why do I continue?  I don't have an answer.  I had a brief period of time where i thought I could see a light at the end of this dark and horrible place that I live every day.  That turned out to be a "mirage"...like the ones you see in the desert when you are delirious from heat stroke.  Yes, I was delirious.  I needed, I wanted, I desired (and still do) to be taken care of so badly, that I was willing to buy into bullshit and ended up with nothing to show for it...NOTHING.  I got more suffering, more sadness, more pain, on top of what I am already carrying.  What are you talking about you may be wondering.  Well guess what, it doesn't matter.  Nothing does.  Enough to know that I figured out that I was a worthless piece of shit and I deserve it...right?  Oh no you say.  Well whatever, two years of therapy and a bunch of bullshit later, nothing has changed.  I am still as messed up as I ever was....I have tried to be good and do the right thing, and help others and be a good person, and what do I get for that....NOTHING and kicked in the gut more times than I care to think about.  I get continued reinforcement of how I am a worthless piece of shit.  I am sorry Nickolas.  I know you wouldn't like this.  I just don't know what to do anymore.  I want the pain to stop.  I am bitter and angry.  And yes, I think I deserve something more in this life than what I am getting, so yeah, that makes me a terrible, shitty person right?  Yep.

“There are far too many silent sufferers.  Not because they don't yearn to reach out, but because they've tried and found no one who cares.”    ~ Richelle E. Goodrich


 “I felt as if I were riding a pendulum. Just as I would swing into the abyss of hopelessness, the pendulum would swing back with some small goodness.”  ~ Ruta Sepetys, Between Shades of Gray

“For Death is the meaning of night;
The eternal shadow
Into which all lives must fall, 
All hopes expire.” 

~Michael Cox, The Meaning of Night

Christmas 2016

I wish you were here.
I wish we could be sitting by this tree.
I wish I did not have this heaviness in my heart.
I wish my emotional trauma over losing you did not trigger me to get angry and lash out.
I wish I didn't have this empty place in my heart.
I wish I wasn't feeling so numb right now.
I wish I could drink my problems away.
I wish I could make people understand how painful this feels.
I wish I didn't want to scream at the top of lungs until someone heard me.
I wish things were different.
I wish people weren't so cruel.
I wish my childhood sexual abuse hadn't turned me into this person sitting here right now.
I wish I hadn't lost who I was when I was permanently scarred by my perpetrator.
I wish I had a brain that was wired normally, instead of trauma.
I wish I could explain how it feels to lose one of my children.
I wish I didn't see everything through the lens of abuse and loss and grief and pain.
I wish I could stop hurting.
I wish this holiday was over because I am so sad and nothing makes it stop hurting.
I wish I could just run away.
I wish I didn't feel like I don't deserve to be happy.
I wish I understood why life is so unfair.
I wish I understood how I am supposed to be ok with my son being dead.
I wish I wasn't (insert any bad character flaw here).
I wish I could go back and have a do over.
I wish I could have my son back in my arms.
I wish I knew why stuff like this has to happen.
I wish I could understand how I will ever be anything but sad for the rest of my life.

“Sadly, like many times in life, including winning the lottery, we don’t always get what we wish for.” 
― Adele Rose

“If you have built castles in the air, your work need not be lost; that is where they should be. Now put the foundations under them.”    ~Henry David Thoreau

“Everything you have said will not matter anymore one day, only those things that you never said will always haunt you and strangle you every time you see your world in someone else's hand.” 
― Akshay Vasu

My Sweet Birthday Boy

Today you are supposed to be thirty-four years old.
Today you are supposed to be living your life.
Today I am supposed to be living my life too.
Today I am supposed to be celebrating the birth of my first child.
Instead, I am grieving the death of my first child, seven years ago.
There is nothing that will ever happen with you now or ever.
It makes me so angry.
It makes me so sad.
I want to feel something besides anger and sadness.  I love you my sweet boy.  I love you more than words can say.  I am tired of writing on this blog about all the times and dates we are missing you since you left us.  So very tired....most days I cannot figure out a reason to go on.  As far as I can tell, no one understands that...no one even knows that is how I feel most days.  The only reason I stay here is for your sister.  I thought something was going to change my life for the better, but that didn't work out.  So the darkness is closing around me again.  I don't think I will be able to make it out again.  Time keeps running away from me.  It goes so fast...

“I kneel in the nights before tigers that will not let me be. what you were will not happen again. the tigers have found me and I do not care.”    ~ Charles Bukowski

"The days run away like horses over the hills."  ~ Charles Bukowski

Seven Years Sad

Another marker on this path.
I have been walking for so long.
I am tired and forlorn.
I keep hoping the journey will soon be over.
I cannot find my way out of the darkness.
I approach the marker to read what it says...
"Seven Years today...August 13, 2009 - August 13, 2016"
I guess I never thought I would make it this far.
People used to say, "I don't know how you do it," or, "If I lost my child, I wouldn't be able to go on."  
Well, I don't have a choice.
I go on...dragging myself through the quicksand of grief as best I can.  Some days seem like they will  never end, the sorrow pulling me down like an anchor, choking the life from me. Some days I just have to stop and rest. When I do stop, I pray the muck of this grief doesn't suffocate me while I am trying to catch my breath. Some days there is a cool breeze and I can imagine it is my sweet boy nudging me onward, telling me, "you can do it Mom.  I love you Mom."  Some days there is only the deafening silence of the vacuum created by the absence of my sweet boy.  Those days are dark and there seems to be no reason to keep struggling against this demon of sadness and loss.
While some aspects of my grief have changed, I still have the overwhelming desire to run away and start a new life.  A life without sadness and pain.  A life where no one knows I lost my most precious son.  A life where the weight of this sorrow is lifted from my body and I can finally breathe again.  I have so many questions and not many answers.  Losing Nickolas changed everything...my world as I knew it was shattered.  My life was forced into a new and unwanted trajectory.  I don't know where I am going or why.  I know I am hurting...still.  I don't believe it will ever stop hurting.  I am tired of being in pain.  I am tired of being sad.  I cannot remember the last time I was truly happy.  I wonder if  I will ever feel joy in my heart again.  Sometimes it feels really hard to keep moving on this path. There is a deep sense of sadness and despair that clings to my heart and soul even as I continue to search for light in the darkness of this grief.

“Because what’s worse than knowing you want something, besides knowing you can never have it?” 
― James Patterson

“The bravest thing I ever did was continuing my life when I wanted to die.” 
― Juliette Lewis

“She felt the depth of her losses before they were realized, and she wondered, Is there still hope? Did she even dare hold on to such a tenuous thing as hope?” 
― Sage Steadman

New Year Baby 2016

As another year begins without you Nickolas, I have nothing new to say.  Every year at this time, the memories of your last days here on earth haunt me.  It was between Christmas and New Year's in 2008 that we found out your BMT had failed and your leukemia had come back.  The devastation of that day...how bad you were feeling before they figured out what was going on...how bad we all felt knowing that the "new year" wasn't looking to bright for you and therefore, not for any of us.  I remember spending that New Year's Eve in a hospital room at Hopkin's trying to put a "good" face on the evil that was cancer.  I sat there with you and tried not to burst into a rage of anger and fear...watching you try to eat when you felt so bad. I remember it feeling very, very sad. And so today when I was in the book store looking for a book of poetry for you Dad's birthday, I stumbled upon this poem by Charles Bukowski.  And I read the whole poem and thought to myself, yes, yes...this is exactly it.  This is how I have felt since the day we got that phone call telling us you had leukemia.  I am so sorry my dear sweet son that you are not hear to celebrate with us and therefore, it seems I cannot celebrate either.   One happy memory I have of you and New Years'...I remember Nana told you about the New Year's baby coming down the rainbow at midnight and when you were little you were always looking for that baby.  You are my baby and I love you with all my heart and I will miss you until I take my last breath.  My heart is forever broken my sweet boy.  Please come home soon so I can hug your neck.  I love you more than a wagon full uf puppies.

with his awful teeth - Charles Bukowski

this dog Sadness is gnawing at me
again.
I sit in this room with a big hole
chewed in my
side.
all I want are some gentle moments
to fall like soft
raindrops.
they will not arrive.
this dog Sadness is a persistent
mongrel.
he finds me so often these days,
again and again.
he is here with me now.
"go on," he growls, "write your
poem about me,
it won't make me go
away."
he's right.
I stop and look at my
wristwatch,
follow the second hand around and around.
it leads me nowhere.
I am trapped here with this sad dog.
I make small movements,
light a cigarette,
rattle a box of
paper clips.
nothing changes.
this dog of Sadness
continues to
sit here with
me,
feeding greedily.
he is getting quite
fat.
you want a pet,
my friend?
I'll give him to you right
now
along with this
poem!
if only
you would
be kind enough to
take him away,
this
Sad
dog.

Christmas Without You

This Christmas is almost over.
This is the seventh Christmas without you my sweet boy.
It is hard to understand how so much time has gone by.
The hole in my heart is still there.
The wounds to my soul are still open.
The longing for you never stops.

I have no words to say anymore.
I love you and your absence has broken my heart.
I don't know how to make the pieces fit back together,
No matter how hard I try they are always in a jumble on the page.
And there is always a piece missing.
You.

I pray you are happy wherever you are my sweet boy.  I wish you would come to visit me.  I rarely dream anymore...dreams don't come true.

“When we can't dream any longer we die.”  ~Emma Goldman      And there is the crux of it! When one is without dreams, without hope, things get very, very, dark and sad.

These two quotes are for you Nickolas.  If you were here, you could tell me why I should still believe in dreams.
“Dreams are the touchstones of our characters.”    ~Henry David Thoreau

“Dare to live the life you have dreamed for yourself. Go forward and make your dreams come true.”  ~Ralph Waldo Emerson

They Say It's Your Birthday

What is "happy?"
I cannot say "happy birthday."
I cannot make myself say those words.
Your birthday will never be "happy" again.
How do I explain how your birth has forever changed my world?
How do I explain how your death has forever changed my world?
Today you would have been thirty-three years old.
I cannot imagine that world.
I cannot imagine who you would be or what your life would be if you were still here.
I cannot imagine who I would be or what my life would be if you were still here.
There is a broken place inside of me.
I must learn to live with that place and make a life around it.
I struggle to find my way in a world that has been irrevocably changed.
I love you my dear sweet boy.
I plead for you to come home and see your Mama.
My heart is broken.
I love you always and forever my sweet Nickolas.

Six Years - The Crater of Your Absence

It is hard to understand how six years have passed since you left this physical world my dear sweet son.

You are so missed and so loved.  It is not hard to understand how the loss of such a vibrant and beautiful young man has sent us all reeling.

Your death was like a meteor striking the earth's surface.  I was stunned and in shock.  I was blinded by the light, the force and the scorching heat of such a devastating loss.

Your death left a crater in my soul and I am still trying to figure out what to do.
How does one understand the emptiness left behind?
How do I explain the hole that I can never fill?
The crater of this loss can never be filled.
Ah, there is the crux of it....so what do I do with this scorched and scarred place in my spirit?

What can I build there?  What life will it support?  How do I make something grow there?
Who wants to sit in this place with me?
Who can help me find a way over, around, or through?

Sometimes the task is daunting...on days like today, I only want to curl up in a ball and cry.  It seems the bleak and dreary grip of sorrow and grief is unrelenting.  It is way stronger than me.  It seems I cannot win.  I am trying to find my way.  The process is slow and seemingly impossible.  The steps forward in my search for new life, joy, happiness, peace, seem so small as to be imperceptible to the naked eye.

And yet, every now and then something propels me forward, the kindness of strangers, the love of your beautiful sister and your Dad, the comfort of friends, and the understanding of those who walk the edges of this crater with me....these things continue to push me along in my grief journey.

My therapist says I am strong...some days I don't feel strong.  I feel weak and tired and afraid.  I want to give up, but I know you wouldn't approve of that, so for you and for Sara, I plod onward.  I am running out of lifelines Nick.  Please come home, I love you more than a wagon full of puppies.  I wish I could see you and hug you and hear your voice and your laughter.  I don't write on here much anymore, because I feel there is nothing new to say.  I love you my sweet boy.

“In some aspects losing a child is like a wall, but instead of getting over it, you must carry the wall with you, wherever you go, for as long as you live.

The wall is immovable.
You can’t go anywhere until you learn to move the wall.
You are just stuck in the same place, forever.
You can tug and tug all you want, there are days that the wall will not move.

And there are days that it moves ever so slightly.

Over time I have realized that in order to move forward, knowing that I must bring this wall with me, that the best way to do so is to metaphorically flood the soil near the wall with water, and have the wall float with me, instead of me having to carry it.

Every act of love and kindness turns to water.
Water and love can penetrate and move anything.
It just takes time. 

I need to turn my wall into a raft.”      ~ John A. Passaro, Again 

Wishes Don't Come True

I wish you were at the beach too Nick.  I wish you never had to leave the beach that week in August when we got the news that they had found a marrow donor. Nothing worked out the way it was supposed to...the bone marrow transplant was supposed to save you you.  You were supposed to be alive.  You were supposed to be here with us.  You were supposed to live!  You weren't supposed to die.  Everything is so messed up....I cannot believe it has been almost six years since I have seen your smile, heard your voice, stood next to you and felt your gentle spirit, laughed with you, talked with you.  I was supposed to watch you grow as a man and dance with you at your wedding and watch you start your family. I was not supposed to be sad for the rest of my life, grieving over the loss of my only son.  I will never understand this.

When anxious, uneasy and bad thoughts come, I go to the sea, and the sea drowns them out with its great wide sounds, cleanses me with its noise, and imposes a rhythm upon everything in me that is bewildered and confused.  ~Rainer Maria Rilke

Ghosts of Christmas Past

Ghosts of Christmas past
Memories yellow and fade.
Haunted and forlorn.

© big D 2014

“I hate you for all the years I 'll have to live without you. How can a heart hurt this much and still go on beating? How can I feel this bad without dying from it?
I 've bruised my knees with praying to have you back. None of my prayers have been answered. I tried to send them up to heaven but they 're trapped here on earth, like bobwhites beneath the snow. I try to sleep and it's like I 'm suffocating.
Where have you gone?
Once you said that if I wasn't with you, it wouldn't be heaven.
I can't let go of you. Come back and haunt me. Come back.”  ~ Lisa Kleypas

“Something was bleeding… and something was broken. It was my heart… because I had to leave you.” 
― Kimberly Brockman, Raven

“Is it ghosts that truly haunt us, or the memory of our own mistakes that we wish we could undo?” 
― Laura Lam, Shadowplay

Christmas Eve

Climb the mountains and get their good tidings. Nature's peace will flow into you as sunshine flows into trees. The winds will blow their own freshness into you, and the storms their energy, while cares will drop away from you like the leaves of Autumn.” 
― John Muir, The Mountains of California

It is Christmas Eve...another year without you.
There is a deep longing to have you here.
It doesn't matter.
The pain is a constant.
The sorrow seeds my soul
Darkness seeps through my veins.
There is nothing I can do to bring you home.
There is nothing I can do to change what has happened.
My world is stark like the words on this page.
There is no color...none of the twinkling lights, the reds, the greens, the bright lights of joy and peace.
My light has burned out...there is a short circuit, a bad bulb...
A tangle of emotions that cannot be fixed.
Your death has shattered my world.
The fragments of my life are crushed by those rushing to and fro.
Christmas means nothing if you are not happy.
It is a horrible time that I try to survive.

I wish you could see the mountains too.  I love you my sweet boy.  I love you always and forever.

Thanksgiving

How long have I been
Living under darkest skies?
Since the day you died.

© big D 2014

Another Thanksgiving without you here Nickolas.
You would have been so very proud of Sara...
She had everyone at her place and her and Dad did all the fixing and cooking.
It will never be the same without you here.
My heart aches for you every day.
I love you so.  Mom

“Some of you say, “Joy is greater than sorrow,” and others say, “Nay, sorrow is the greater.”
But I say unto you, they are inseparable.
Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed.”             ~Khalil Gibran

“Sorrow prepares you for joy. It violently sweeps everything out of your house, so that new joy can find space to enter. It shakes the yellow leaves from the bough of your heart, so that fresh, green leaves can grow in their place. It pulls up the rotten roots, so that new roots hidden beneath have room to grow. Whatever sorrow shakes from your heart, far better things will take their place.”   ~Rumi

Happy...Oops, You Are Dead...Never Mind

A Birthday Wish

Your birth brought me joy
Your death has destroyed my world.
Wishes don't come true.
Blow out the candles
You are never coming back.
Everyone go home.

© big D  2014

Bones shake, it's lonely it's late
Footsteps, echo, glimmers of hate
Howling candles are blowing a sound
Why can't I tell you it's all going down?
And there's a sadness deep down in my soul
Hard times just won't let me go

I need you to help me through
I can't lay these ghosts to rest
Though I'm scared, and it's dark
Oh, I know it's all a mess,  their faceless
And headstrong, I got them starring back at me
But my will still strong, I won't let them take me in
I won't let them take me in

Angels crying, lost in shame
Demons laughing, playin' the game
And there's a sadness deep down in my soul
Hard times just won't let me go

I need you to help me through
I can't lay these Ghosts to rest
And though I'm scared and it's dark,
Oh, I know it's all a mess, their faceless
And they're strong, I got them starring back at me
But my will still strong, I won't let them take me in

Days roll on from dust to dawn for all the time, all the time
My faith is grown, the seeds we've sown, alright, alright
There's a sadness deep down in my soul
I need you to help me through
I can't lay these ghosts to rest
And though I'm scared, and it's dark
Oh, I know it's all a mess, their faceless
And headstrong, I got them starring back at me
But my will is still strong, I won't let them take me in
I won't let them take me in
I won't let them take me in
I won't let them take me in

(Song - Ghosts  by Laura Welsh)

And Gold Turns To Gray

So I have lost all track of time...I guess it doesn't matter.  This was the "mini-mental" Nick did when he was admitted for his bone marrow transplant.  I wanted to put these up on the dates that things happened.  I guess it doesn't matter....nothing seems to matter.  I remember that admission so clearly...that was only his second time "admitted" to the hospital.  Although he had spent most of the summer getting toxic chemicals shot into his spinal fluid via a lumbar puncture which left him completely incapacitated by horrible spinal headaches.  The fact that this was his "last" "healthy" summer seemed not to matter at all to those at the hospital we told about this unfortunate side effect.  I do remember one of the nurses "lecturing" or scolding me about my use of the word incapacitated, because I needed to be lectured or scolded. I think she thought it was her job at the time to let me know, Nick was in great shape compared to a lot of the other living corpses walking around that effing cancer center.  But she was wrong she didn't need to let me know that, cause I already knew what could happen and I prayed to God it wouldn't. How wrong I was about that!  And how I would have liked to take the nurse to Nick's death bed and ask her if his condition qualified now?  I just wanted my son to be able to enjoy the time he had before all the effing shit hit the proverbial fan.  Shouldn't someone have figured out that all he needed was a small dose of steroids added to the chemical cocktail to eliminate the headaches (like they figured out the next time he had to go through it which would be in January 2009 when his leukemia relapsed in his spinal fluid)!!!!  The bottom line is they didn't care.  Nick was just a number to most of the people...especially in those early days.

On this admission,  although we were all very scared, at that time we still had hope.  Hope that everything would be alright and Nick would come through the BMT alive and hope the BMT would actually work and rid Nick's body of the leukemia.  On that admission, this is what Nickolas wrote....

 "The sea calls and the wind blows strong."

At the time we had no idea....what was coming.

“A sailor chooses the wind that takes the ship from a safe port. Ah, yes, but once you're abroad, as you have seen, winds have a mind of their own. Be careful, Charlotte, careful of the wind you choose.” 
~Avi, The True Confessions of Charlotte Doyle

“For example, the wind has its reasons. We just don't notice as we go about our lives. But then, at some point, we are made to notice. The wind envelops you with a certain purpose in mind, and it rocks you. The wind knows everything that's inside you. And not just the wind. Everything, including a stone. They all know us very well. From top to bottom. It only occurs to us at certain times. And all we can do is go with those things. As we take them in, we survive, and deepen.”  
 ~Haruki Murakami  "Hear The Wind Sing"

The sun shone high those few summer days
Left us in a soft, wide-eyed haze
It shone like gold
It shone like gold

But just as the moon it shines straight
So dawn goes down today
No gold can stay
No gold can stay

What if our hard work ends in despair?
What if the road won't take me there?
Oh, I wish, for once, we could stay gold

What if to love and be loved's not enough?
What if I fall and can't bear to get up?
Oh, I wish, for once, we could stay gold
We could stay gold

We're on our way through rugged land
Top of that mountain we wanted to stand
With hearts of gold
With hearts of gold

But there is only forward, no other way
Tomorrow was your hope at the end of the day
And gold turns gray
And gold turns gray

What if our hard work ends in despair?
What if the road won't take me there?
Oh, I wish, for once, we could stay gold

What if to love and be loved's not enough?
What if I fall and can't bear to get up?
Oh, I wish, for once, we could stay gold
We could stay gold

All of my dreams, they fall and form a bridge
Of memories where I can get back
All of my dreams, they fall and form a bridge
Of memories where I can't get back to you

What if our hard work ends in despair?
What if the road won't take me there?
Oh, I wish, for once, we could stay gold

What if to love and be loved's not enough?
What if I fall and can't bear to get up?
Oh, I wish, for once, we could stay gold
We could stay gold

Could stay gold
Stay gold

(Song:  Stay Gold  by First Aid Kit)

Five Years

Death took you from us
Unimaginable loss.
Unbearable pain.

Cancer came calling
It ravaged your strong body
Stealing your dreams

Stealing my dreams
Plunging us into darkness
Forsaken and lost.

Struggling for air
The search for meaning futile
Still feeling hopeless.

© big D  2014

“The heart dies a slow death, shedding each hope like leaves until one day there are none. No hopes. Nothing remains.”      ~Arthur Golden, Memoirs of a Geisha 

Life In Slow Motion

When you get admitted to the cancer center they do this test on all the patients to assess their cognitive function to get a baseline.  So then when the patient is all looped up and spaced out on drugs for pain or sedation, they can determine how far off the curve you have fallen.  This is Nick's first one of these assessments.  This is the second page of the test.

They would hand him the paper and say, "do what it tells you to do on the paper."  So of course, he would close his eyes.  Then they would have him trace the shapes on the paper and then draw them.  Then they would ask him to write something.  Nick would always write something and hand the paper back to the nurse.  I never knew what he wrote.  I always wanted to ask him what he wrote, but I never did, feeling like an intruder in my own child's life or like it was some kind of invasion of his privacy.  After Nick would hand back the paper, the nurse would always read what he wrote.  Sometimes looks were exchanged or the nurse would comment on what Nick had written.  After several of these exchanges,  I sometimes wanted to jump up and tear the paper out of the nurse's hand and say, "Let me read that...he is my son. I should get to read what he is writing."  But I never did.

Instead, when I returned to Hopkins after Nick's death, to go through all of his medical records in hopes of bringing a lawsuit against the hospital, this is when I found all of these papers!  This is when I read them for the first time.  As I went through the reams and reams of paper which represented the horror of his life with cancer and the months and months of his life he spent there...this is when I found the papers, this is when I read what Nick wrote with each new admission back to hospital.  These admissions always felt like defeat, like a battle lost, like another step toward losing the war.  Nick hated to go back, he hated to be admitted and he never liked this stupid test.

I have been meaning to present these in the order that Nick wrote them over the timeline that they were written.  I am now finally doing that...even now it is so painful to see his words, to see his handwriting, to know his thoughts and wishes, and worst of all to know that none of them were ever fulfilled.  They reflect the beauty of his heart, his spirit, his soul...the essence of who he was in every way.  To me, they are nothing short of heartbreaking and gut wrenching.

This is the first one....this test was done on the second day of that first fateful admission, when we first found out Nick had leukemia.  He was too sick to do it on the first day.  His words...

"I wish I was at the sea."

“My soul is full of longing for the secret of the sea,
and the heart of the great ocean sends a thrilling pulse through me.” 
~Henry Wordsworth Longfellow

“There was a single blue line of crayon drawn across every wall in the house. What does it mean? I asked. A pirate needs the sight of the sea, he said and then he pulled his eye patch down and turned and sailed away.”   ~Brian Andreas

I feel like my life continues to be laden with grief, mourning and sadness.  I stopped writing because I really had nothing new to say.  I still don't.  The melancholy of David Gray's song touches me and I feel like my life is in slow motion somehow, and yet, the time of my life runs past me, as if mocking my fate. It is difficult to explain the abyss, the quicksand, the darkness....I am doing the best I can, which most days does not seem near good enough. I let others speak now, for they do so with more eloquence and grace.  I have no energy for such things it seems.  But the calender forced my hand on this one and so it begins....

Midnight

Another "new year" begins without you Nick.

It seems like every year it gets worse...

For years I worked New Year's Eve and New Years day so that I could be off for Christmas.

So many times I spent New Year's Eve driving home in the car as the clock hit midnight.

Then there were the years between when i stopped working as a nurse and your leukemia diagnosis,

that was December 2004 through December 2007.

I don't know what I did on New Year's Eve for those years. 

Then there was New Year's Eve 2008 - we spent that one in the hospital...I will never forget.

Then there was New Year's Eve - December 2009 - you were dead for that one...that was the first one without you, with more to follow - all equal parts sadness, bitterness, pain, longing, anger....

December 2010, December 2011, December 2012,

and now December 2013....leading to the start of another year without you.   This year I couldn't wait for the holidays to be OVER.  So now they are....I still cannot say the words "Happy New Year"  or "Happy" anything for that matter....the word "happy" does not exist in my vocabulary now.  I am not happy...is that because Nickolas is dead and gone from my life forever?  Well I would say that is a huge part of it.  I have been in the dark so long, I cannot imagine my life any other way.  And it seems that whenever I get even a glimpse of pure joy, it is snatched away from me in the blink of an eye...and I am wonder when or if I will ever be happy again.  And I wonder do I really want to keep living like this for how much longer?  I will never understand....

“I would say happy new year but it's not happy; it's exactly the same as last year except colder. ”   ~Robert Clark

“Hope...smiles from the threshold of the year to come, 

Whispering 'it will be happier'...” ~Alfred Tennyson

“No matter how much time passes, no matter what takes place in the interim, there are some things we can never assign to oblivion, memories we can never rub away.”   ~Haruki Murakami

“They say you can't stop time, that it is a constant and waits for no one. They're wrong. Time slows down when you want it to speed up. It goes too fast when you're having fun. And it stops. It stops, dead in it's tracks, when the unthinkable occurs. Time is not neutral, it makes no sense, and it bears no logic. It has nothing to do with nature or fairness or physics. 

Time is cruel.
And it's as simple as that.”  ~Heather Killough-Walden

Blue Christmas

It will always be a blue Christmas without you my son.
I remember so vividly our last Christmas together...
I only wish it had been happier.
I only wish  my deepest fears had not been realized.
I miss you today and every single day of my life since you left this world.
I am so blue without you...

This description of the meaning of the color blue reminds me of so many things about you Nickolas...my beautiful son.

This color is one of trust, honesty and loyalty. It is sincere, reserved and quiet, and doesn't like to make a fuss or draw attention. It hates confrontation, and likes to do things in its own way.

Blue is reliable and responsible. This color exhibits an inner security and confidence. You can rely on it to take control and do the right thing in difficult times. It has a need for order and direction in its life, including its living and work spaces.

This is a color that seeks peace and tranquility above everything else, promoting both physical and mental relaxation. It reduces stress, creating a sense of calmness, relaxation and order - we certainly feel a sense of calm if we lie on our backs and look into a bright blue cloudless sky. It slows the metabolism. The paler the blue the more freedom we feel.

In the meaning of colors, blue relates to one-to-one communication, especially communication using the voice - speaking the truth through verbal self-expression - it is the teacher, the public speaker.

The color blue is idealistic, enhancing self-expression and our ability to communicate our needs and wants. It inspires higher ideals.

Blue's wisdom comes from its higher level of intelligence, a spiritual perspective.

Blue is the color of the spirit, devotion and religious study. It enhances contemplation and prayer. On the other hand, blue's devotion can be to any cause or concept it believes in, including devotion to family or work.

Blue is the helper, the rescuer, the friend in need. It's success is defined by the quality and quantity of its relationships. It is a giver, not a taker. It likes to build strong trusting relationships and becomes deeply hurt if that trust is betrayed.

Blue is conservative and predictable, a safe and non-threatening color, and the most universally liked color of all, probably because it is safe and non-threatening. At the same time blue is persistent and determined to succeed in whichever endeavors it pursues.

Change is difficult for blue. It is inflexible and when faced with a new or different idea, it considers it, analyzes it, thinks it over slowly and then tries to make it fit its own acceptable version of reality.

Blue is nostalgic. It is a color that lives in the past, relating everything in the present and the future to experiences in the past.

“No truth can cure the sadness we feel from losing a loved one. No truth, no sincerity, no strength, no kindness, can cure that sorrow. All we can do is see that sadness through to the end and learn something from it, but what we learn will be no help in facing the next sadness that comes to us without warning.”   ~Haruki Murakami

Time Is Spinning Silk

My beautiful son
You are gone forever now
Never to return.

© big D 2013

Another holiday ticks
off the calender.
I do not live.
I merely exist.
Who gives a fuck about
the holidays?
I don't care about any of it.
It seems there is nothing
that can take away the pain
of losing you.
There was a glimpse of light, a healing spirit
For a brief moment in time
Where I thought I might actually understand
about this thing called "hope."
But then the light was snuffed out,
Just like your life,
And it was gone.
I am resigned to living in black and grey.
There is no color in my world.
I am tired and have no strength to fight.
I do not want to be judged.
I do not want to be lectured.
I do not want to be told what to do, or think or say...
My son is dead....
I just want it to stop hurting.
How will it ever stop hurting?

“There is a light in this world, a healing spirit more powerful than any darkness we may encounter. We sometimes lose sight of this force when there is suffering, too much pain. Then suddenly, the spirit will emerge through the lives of ordinary people who hear a call and answer in extraordinary ways.” 

~ Mother Teresa

“At some point we all look up and realize we are lost in a maze.”   ~John Green

“If there was a God, he'd guide the winds, let them blow for me so that, with a tug of my string, I'd cut loose my pain, my longing.”   ~Khaled Hosseini

So slowly I'm losing 
who I've sworn to be. 
a promise in pencil 
that years have made so hard to read. 
I've spent my life building walls 
brick by brick and bruise by bruise... 
a birdcage religion that whispered me to sleep. 

but time is spinning silk 
that coils ruthlessly; 
with the devil's patience, 
it binds my hands so quietly 
that soon it becomes a part of me. 

so soften these edges and straighten out my tie. 
and help me remember 
the hope that I have compromised. 

please be a broken record for me.

(Song:  Birdcage Religion  Sleeping At Last)

All Alone

Unraveling still.

Even as I clutch at this 

Stark and dismal truth.

© big D 2013

So foolish to think 

I could get out of this...

A cruel fate I must learn to accept.

There is no hope.  

Only darkness and pain.

“I don’t want to be in pain anymore. I want to be done, to be left unburdened and naked, to tear the hurt off my body like layers of clothes. At the end of the trail I stop and bend forward, hands on my knees, to catch my breath. I’m not healed, but for this moment, I’m better.”  

 ~ Kerry Cohen, Loose Girl: A memoir of Promiscuity

I’m looking for a way out
For a place that no one knows
Please take me away now
Somewhere it don’t feel so cold

Troubles on my mind
Troubles on my mind
For the rest of the days I’ve cried
For the rest of the days I’ve cried

I’m searching for a paradise 
That I just can’t seem to find
I’m searching for a paradise 
For the time of my life

I’m searching for a paradise 
That I just can’t seem to find
I’m searching for a paradise 
Gonna go where the spirit guides

All alone

My silhouette is fading
Past the point of safe return
Now my body’s aching
As both ends of the candle burn

My heart is beating slow
My heart is beating slow
It’s worn me to the bone
It’s worn me to the bone

I’m searching for a paradise 
That I just can’t seem to find
I’m searching for a paradise 
For the time of my life

I’m searching for a paradise 
That I just can’t seem to find
I’m searching for a paradise 
Gonna go where the spirit guides

All alone
All alone
All alone

(Song "Paradise"  by City and Colour)