December 25, 2014

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 BrockmanRaven

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

December 24, 2014

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 MuirThe 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.

November 27, 2014

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

September 11, 2014

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)

August 31, 2014

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)

August 13, 2014

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 GoldenMemoirs of a Geisha 

May 29, 2014

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....

January 02, 2014

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