Four Years

Four years without you
My heart is filled with longing
To see you again.

Four long years without
Your smile, your laughter, your love,
Your kind thoughts and words.

Four years of anguish
Such intolerable pain
Searching for release.

Finding none.

© big D 2013

Dark Surprise

Your death was a dark surprise....I should have seen it coming.  I knew and yet, I was so terrified of losing you.  I was losing my mind as all control ebbed from my body like blood flowing from a gaping wound. On that day, I stood frozen, like a mad woman, terrorized by days of watching you being tortured, watching the suffering you endured, in the name of living.  I stood there in so much pain, while your death came barreling down the dark road your journey through cancer had become. We tried to stop it, but we had no chance against this grim reaper. Nickolas, you fought so hard for so long; your strength, your courage, your spirit, even our love was no match for the tenacity of this enemy.  I stood watching in horror as you were taken from the ventilator, unable to move, unable to scream, unable to accept the harsh reality, that you were going to take your last breath and you would be gone from us forever. To this day, almost four years later, I cannot believe it, I cannot understand it, and I cannot accept it.  I have so many regrets and so much pain. The horrible pain of that day remains a part of my daily existence.  I don't know how or why I continue to survive it.  So sad all the time and missing you more than i will ever be able to say.  Words cannot express the anguish and torment of this existence.  I cannot find a way out of this darkness. I love you my sweet boy, always and forever, Mom

“It is a curious thing, the death of a loved one. We all know that our time in this world is limited, and that eventually all of us will end up underneath some sheet, never to wake up. And yet it is always a surprise when it happens to someone we know. It is like walking up the stairs to your bedroom in the dark, and thinking there is one more stair than there is. Your foot falls down, through the air, and there is a sickly moment of dark surprise as you try and readjust the way you thought of things.” 
~ Lemony Snicket, Horseradish: Bitter Truths You Can't Avoid

“For what is it to die but to stand naked in the wind and to melt into the sun? And when the earth shall claim your limbs, then shall you truly dance.”   ~Kahlil Gibran

Memorial Day 2013

Before I Went Under

Detached from emotions
I decided to derail this train.
Determined to let you know
I defy you to take my place on this hellacious track.
Derisive comments will not sway me.
I deeply feel the pain of your judgement.
Detained forever.
My denuded life lies in tatters at my feet.
Delusional, maybe.
Beware the deceptive practices of the trusted.
Their deceit will lead to death.
Debate is useless.
I declare the futility at an end.
Default plan B.
My decay has already begun.

© big D 2013

Looking out from underneath, 
Fractured moonlight on the sea
Reflections still look the same to me, 
As before I went under.

And it's peaceful in the deep, 
Cause either way (Cathedral, where) you cannot breathe, 
No need to pray, no need to speak
Now I am under, Oh.

And it's breaking over me, 
A thousand miles down (on)to the sea bed, 
Found the place to rest my head.

Never let me go, never let me go.
Never let me go, never let me go.

And the arms of the ocean are carrying me, 
And all this devotion was rushing over (out of) me, 
And the crashes are heaven, for a sinner like me, 
But the arms of the ocean deliver me.

Though the pressure's hard to take, 
It's the only way I can escape, 
It seems a heavy choice to make, 
But now I am under, Oh.

And it's breaking over me, 
A thousand miles down to the sea bed, 
Found the place to rest my head.

Never let me go, never let me go.
Never let me go, never let me go.

And the arms of the ocean are carrying me, 
And all this devotion was rushing over (out of) me, 
And the crashes are heaven, for a sinner like me, 
But the arms of the ocean deliver me.

And it's over, 
And I'm going under, 
But I'm not giving up! 
I'm just giving in.

Oh, slipping underneath.
Oh, so cold, but so sweet.

(Music & Lyrics - "Never Let Me Go"    Florence and the Machine

Lost Identity

I've Joined The Circus

You are my heart.  I cry for you every night.
You would have been thirty years old on September 11, 2012.
But you will be forever 26. No more birthdays for you.
Mickey is wearing your hat. All your hats are still in your room.
Tim Sunny-Bear remembers days of love and laughter.
I found your teenage mutant Ninja turtle in the attic.
You were always such a sweet boy, full of joyful happiness and smiles.
I search for you everywhere.  All paths lead nowhere.
No matter how far I walk I cannot reach you.
Your belt is still on your bed with all the extra holes you punched in it so you could hold up your pants.
That belt reminds me of your emaciated frame and how hard it was to fight that cancer
that ravaged your body.
The pounds dropping away like the days of your life...
Shattered and broken, dark clouds swirling.
The bluebird of happiness died and he sings no more.
I have lost my faith...
There is no god that would let this happen to my sweet boy.
I wanted your  baby footprints...they threw them away.
I wanted your fingerprint....no one thought to ask.
Your dream catcher still hangs from the ceiling over your bed.
There are no more bad dreams for you my son.
No dreams of any kind...no future for you.
No future for me.
You are my sunset, my autumn leaves.
You are one of the most beautiful things I ever created.
When you left, all the pages in my book turned black and gray.
Everything is such a mess.
I only want you to come home. Please come home.
If you don't come home...
I am going to run away and find a place to start over.
I am going to find a place...
Where no one knows the depths of my sadness or my pain.

© big D 2013

Stricken With A Great Sadness

“The way sadness works is one of the strange riddles of the world. If you are stricken with a great sadness, you may feel as if you have been set aflame, not only because of the enormous pain, but also because your sadness may spread over your life, like smoke from an enormous fire. You might find it difficult to see anything but your own sadness, the way smoke can cover a landscape so that all anyone can see is black. You may find that if someone pours water all over you, you are damp and distracted, but not cured of your sadness, the way a fire department can douse a fire but never recover what has been burnt down.”
~ Lemony Snicket, The Bad Beginning

I love you always and forever my sweet boy. I miss you with every piece of my broken heart.  Please come home.  Mom xo

Sweet Son

Had a dream about you last night.
We were in a candy store.
Buying candy.
I saw your face.
You smiled at me.
That's all I remember.
So horrible that I cannot even capture you in my dreams.
They fade so fast.
They don't seem real.
Sometimes I barely remember.
I dreamed of you.
Then I remember you are gone.
Gone forever.
So now I dream about you in a candy store.
What kind of candy do you want my sweet boy.
I love you more than a wagon full of puppies.
Always and forever you are in my heart.
Please come home soon, so we can go buy some
real candy.

Find Me

Are things different now?
More time has passed.
1,257 days, 22 hours, 40 minutes
Sinking deeper into the quicksand of pain and loneliness.
The only problem is...there is  nothing quick about it.
It is like a faucet slowly dripping, it never stops.
The acid of your death eats away at whatever I have left.
It burns like fire, putting holes in the shattered remnants of my soul.
Pulling the dark shroud around me, I close out the light and try to protect myself from the incessant beating.
The erosion continues day after day.
Soon there will be nothing left of me.
I gather what is left of my shield and hunker down.
Sometimes I hear footsteps and I wait.
Someone has come looking for me.
Ever so gently the cloak is lifted.
The light blinds me with shards of hope.
A soft voice penetrates the walls of my heart.
"I am here.  It is time to go.  Come with me, I will protect you."
I wonder how he found me...but I do not care.  At last, I am free.

© Big D 2013

Find me, here in your arms
Now I'm wondering where you've always been
And blindly, I came to you
Knowing you'd breathe new life from within
Ooh and you sleep, here in my arms
Where the world just shuts down for awhile
And blindly, you came to me
Finding peace and belief in this smile
Find some peace and belief in this smile
Well find some peace and belief in this smile

I can't get enough of you

(Song "Find Me"  Boyce Ave)

Can't Look At the Stars - New Year's Day 2013

“We all want to break our orbits, float like a satellite gone wild in space, run the risk of disintegration. We all want to take our lives in our own hands and hurl them out among the stars.”  ~David Bottoms

“Hope drowned in shadows
emerges fiercely splendid––
boldly angelic.”  ~Aberihani, The River of Winged Dreams


“Rather than turning the page, it's much easier to just throw the book away.” ~Anthony Liccione


Dearest Nickolas, I am missing you so much on this start of another year, our fourth New Year's without you.  This time always makes me sad and withdrawn. I cannot help but to remember back to the last New Year holiday we spent together in the hospital, our dreams of your recovery shattered by a relapse diagnosis.  I try to forget those awful days, but they cannot be erased from my mind.  I love you more than a wagon full of puppies. Please come home soon Nick, I love you always and forever.  Mom xo

Living Parallel Lives

I cannot say "Merry" Christmas anymore.  I don't know if I will ever be able to say it.  The best I can do is wish "peace" for those who are able to celebrate...I have placed an excerpt from a CaringBridge site below, it gives great insight into what it is like to go through life after losing a child...of any age!  Sara gave me the most wonderful gift this year.  She had guitar picks personalized with a picture of Nickolas on one side and part of the Emerson quote we used at Nick's memorial. The Emerson quote is, "Live in the sunshine, swim the sea, and drink the wild air."  The back of the pick say, "Drink the wild air."  I am so far from being able to do that right now...the guitar has been a blessing for me in some way...the music is soothing and I feel closer to Nickolas when I play.  I don't understand why and I don't need to understand.  I just do...

Here is the excerpt...this is another Mom who lost her son to cancer (neuroblastoma).  Her son was amazing and awesome too.  It has been a year since they had to say goodbye to their son.

I attend a mothers' bereavement group once a month.  Wonderful women who walk this same journey and "know" in a way no one else possibly can.  Last month there were two new members.  This is of course a group where you hate to welcome new members because it means another mother has buried her child.  One of these moms whose loss was very recent tearfully asked "does it get better?"  Part question, part plea.  We've all asked it.  Some of these moms are several years into this journey and offered their thoughts.  Basically, no, it does not get better.  It gets different.  You learn to function.  One put it in a way that was absolutely perfect.  I don't remember the exact words, but she said in effect it's like you start living two parallel lives, as if you're simultaneously on two side by side train tracks.  One track is living in The World with everyone else, doing the normal things of work, grocery shopping, socializing, etc. and AT THE EXACT SAME TIME you're also living in this other world of unspeakable pain.  Two parallel lives on two parallel tracks. 

So, on one track, we put the Christmas tree up, shop, wrap, bake, send cards, eventually stop switching the radio station when the Christmas song comes on and "celebrate" as it were.  I'll be honest, it's all quite forced.  Not that we don't enjoy getting together with family and close friends.  We really do.  But on that other track all we feel is the emptiness of another Christmas without our (son/daughter.)  The wrongness of it all.  The desire to just get it over with for another year. 

So as I spend another year on the two tracks myself I can tell  you it ain't no fun whatsoever!  The world of "unspeakable pain" is real and there is nothing legal to take to make it STOP!!  I will always be on two tracks for the rest of my life...that in itself is something extremely hard to wrap my mind around. 

And finally this....

“... If the dead can come back to this earth and move unseen around those they loved, I shall always be near you; in the garish day and in the darkest night—amidst your happiest scenes and gloomiest hours—always, always; and if there be a soft breeze upon your cheek, it shall be my breath; or if the cool air fans your throbbing temple, it shall be my spirit passing by.”  ~Paul Hoffman

Another Christmas Eve Without You

There are no words to describe the pain of losing your child. No words to describe the painful reality that they will never be a part of this physical world ever again. 

On this, our fourth Christmas without Nickolas, I am longing for my son to be here with us.  My heart cries out for him every day and there is no answer...only the silent echoes of pain and loss. 

I sit alone here with the undecorated, unlit tree that was dragged down from the attic by Glenn and Sara.  They didn't decorate it, they don't even plug it in.  I don't know why they brought it down. The holiday has never been the same since I sat here in terror wondering if Nick's last Christmas would be his last....I wanted to be wrong so badly.  When I went to my brother's house for a family gathering yesterday, I was taken aback by the stark contrast between our homes.  It seems like the grief is palpable here....it colors everything we do and say and feel.  I don't know how to change it...I don't know if I want to....I don't know anything. 
                                 I am lost.      I am lost.      I am lost.

“How could you go about choosing something that would hold the half of your heart you had to bury?”  ~Jody Picoult

“My sister will die over and over again for the rest of my life. Grief is forever. It doesn't go away; it becomes a part of you, step for step, breath for breath. I will never stop grieving Bailey because I will never stop loving her. That's just how it is. Grief and love are conjoined, you don't get one without the other. All I can do is love her, and love the world, emulate her by living with daring and spirit and joy.”  ~Jandy Nelson, The Sky Is Everywhere

“Adam is crying and somewhere inside of me I am crying, too, because I'm feeling things at last. I'm feeling not just the physical pain, but all that I have lost, and it is profound and catastrophic and will leave a crater in me that nothing will ever fill.”  ~Gayle Forman, If I Stay

“In time, in time they tell me, I'll not feel so bad. I don't want time to heal me. There's a reason I'm like this.
I want time to set me ugly and knotted with loss of you, marking me. I won't smooth you away.
I can't say goodbye.” ~ China Mieville, The Scar

I love you always and forever my sweet boy.  Please come home soon.  Mom xo

Malady of the Soul

With what a deep devotedness of woe
I wept thy absence - o'er and o'er again
Thinking of thee, still thee, till thought grew pain,
And memory, like a drop that, night and day,
Falls cold and ceaseless, wore my heart away! ~Thomas Moore

I have no words to say what I want to say, to describe what is my day-to-day existence. 
Doesn't seem to matter anyway.
Another holiday season is here...the pain clings to my soul like the grip of death that stole my son from me. 

It's Over

Where are you my son?
Are you waiting for me somewhere?
Will I ever see you again?

The pain of losing you pierces my soul and the anger and bitterness spews out, ruining everything.

I hate myself sometimes.
I hate that you are dead.
I hate that there is nothing that will change that fact.
I hate that I have to feel this way every single day, digging my way through the darkness and the sadness.

Who wants to be me...?

It`s Over 

Angels will carry you home tonight,
I cannot carry you now.
Love you have taught me the meaning of life,
But you are leaving me now.
Take me too, Oh God where are you?

And I can’t believe it’s over, it’s over, it’s over.
It’s torture to breathe, now it’s over, it’s over, it’s over.

Spare me your reasons and don’t tell me lies,
All things aren’t better with time.
How can a heart hurt as badly as mine,
And still go on beating inside?
Take me too, It’s not me without you.

Please, Please, I don’t know what else to say.
Please, Please, don’t take my sunshine away.



(Lyrics  by Kendall Payne)

Here is another blog written by a Mom who lost her little boy to cancer....her words in this post are right on point.  Can you try to understand?  Please....!

Lonely Tree

Sitting, staring at the blank page.
No words seem to come.
How does it happen...this numbness?
How much longer will I feel this way?
Alone in a void of silence and pain.
Should I feel good that I am not crying every single day?
Nickolas seems to drift farther and farther from me every day.
Memories cannot replace a loved one.
It's not possible.
It's not the same.
Nothing is the same.
Nothing will ever be the same.
I want to scream.
I want to break things.
I want to be someone else.
How many more days?
How much longer?

Started to go through Nick's things....
"I know...let's make a quilt out of Nick's shirts, that will make everybody feel better right?"

I look around Nick's room, his things gathering dust as my heart gathers pain. 
Soon the holidays will be here....a never ending cycle.

Running Away

"Running away never solved anything!" she said with great authority and no practical knowledge of what she was talking about.

"It seems like a good idea to me."

I  just want to disappear...still. 

I am invisible, so I guess I have already disappeared. 

Question below was taken from The Compassionate Friend Facebook page:

"Does anyone else have days when you just want it to be okay to feel miserable? To not feel like you have to be strong in public and act like you are okay when really you are dying inside and you want that to just be okay for that day." 

So tired of saying I am "ok" when I am not.  So tired....

9/11 - The Day My Son Was Born

Today Nickolas would have been thirty years old.  Under normal circumstances, a milestone for most young adults and their families.  I like to imagine that Nick would be married by now and maybe even have a little baby of his own....breaks my heart all over again.  On this what would have been your "30th" birthday my beloved first-born son, know that you are well-loved, we treasure every moment you were with us.  I miss you so much, sometimes I cannot breathe.  The missing is a constant ache in my soul, it will never leave me.  Today Sara went on a hike, I hope you saw her there on the path and brushed her cheek with the gentle wind of your spirit. Your Dad and I went to Miss Shirley's and ate some good food in your memory. Did you come and sit with us and eat something too? I wondered what you would order?  I cried as I tried to remember what kind of birthday cake you would like today.  Please come home soon and get your birthday hug.  What I wouldn't give to see you come through that door again. I love you more than a wagon full of puppies. 

Yield Ahead

Succomb

I see you there
All glowing and glorious.
Surrounded by stars, winking at me, beckoning me to come.
It is so dark, but you light my path.  You are so close, I want to reach out and touch your beauty.
The thought of it makes me smile, just for a moment, and then...
I see the water, murky and deep.
The calm surface hiding the undertow beneath.
Pulling me down ever deeper.
Struggling for breath.
Precious air. 
Afraid I will never get to you.
Tired of swimming. So tired....
© bigD  2012

The other day I was thinking what it would be like to see Nick again.  To wake up one day and realize this was all just a horrible, horrible nightmare.  When I think about the prospect of seeing Nick again, holding him in my arms, looking into his eyes like I did on the day he was born....if I make myself really believe it, I think about how happy I would be, how everything would change, how nothing would ever bother me again...how I could go on with my life and feel happiness again!  The feeling of this brief moment of joy suddenly illuminates the darkness that I live with every day and the stark contrast between that dark and light takes my breath away.  It is as if the clouds break for just long enough to let me see my oppressors, the sadness and melancholy of my "new" world.  It suffuses my every waking thought, my soul, my spirit, my being.  I cannot shake it.  I cannot make it stop. I don't know how to be happy without one of my children in my world.  Not truly happy.  My life is filled with constant reminders of the depth and breadth of this loss. It doesn't have to be something big, the smallest things can trigger an avalanche of sorrow and pain.

It seems like there are two options.... 100% grief or 100% denial.  For me there is no space between.  If there is a way to balance this I have not found it yet. 

Random thoughts on random things:

Your shoes...size 13.  I remember how much energy it would take for you to put them on every time we had to travel to the hospital.  How happy you were to put them on when it was time to be discharged and go home.

Your wallet...filled with now useless items, yet I cry as I think of what each one meant for your life.  Driver's license, just renewed after your diagnosis and your chemo had started.  Bald head.  Your eyes staring out at me with sadness?  confusion?  hope?   You so rarely drove after you were diagnosed.  Mostly we drove together, back and forth, back and forth, to Johns Hopkins, carving a path down that road.  A road that still today brings pain, anxiety, panic, tears, and always sadness.

Your University of Maryland ID card....days of fun and carefree joy.  I wish I had spent more time being with you then Nick.  I am so sorry for all the time I didn't see you....precious moments and memories forever lost.  I feel like those years are a huge gap in my mind....I thought I would have a lifetime of days with you my son, with your future family and children.

Your library card - your signature barely readable, so worn and well used.  So many books and a thirst for knowledge...I am so proud of you my son and so saddened by the utter waste of such an intelligent and caring young man.

Every day I stare at the box that contains your ashes.  I say to myself, "this is all that is left of my son.  This is all that is left of the life that I carried under my heart for almost ten months.  This is all I have of the genetic material that made you who you were and yet turned on you and killed you in the blink of an eye."  I have a beautiful wooden box.  They call it a "keepsake" box.  That is where I am supposed to place a portion of your ashes before I bury the rest in the also, lovely, biodegradable and eco-friendly box I bought to put the rest of you in, whenever I am finally able to send you back to the earth.  I don't know when I will be ready to do that.  Right now I like to hold that box of ashes and remember the weight of you when you were a baby...a few months old...it feels like that.  I can't let go of your "remains."  Such a stupid concept anyway...remains.

I will never forget the day we went to the funeral home...to "see" you before they cremated you.  Oh my sweet boy, the pain of that day is fresh in my mind.  Your death still not real, even as I saw you lying there....even as I had to let them take your body and burn it, after all that you had been through, after all you had endured in the name of  living and being cured...and yet you were betrayed by so many things and so many people.  Our love wasn't enough.  I could not protect you.  Please forgive me my sweet son....I love you so much.  Only when I see you again, will I feel true happiness.

"How beautiful the yesterday that stood over me like a rainbow.
I am alone.  The past is past.
I see the future stretch all dark and barren as a rainy sea."  ~ Alexander Smith

Stars

Grace Potter & the Nocturnals - Stars

Still Dead

 

Glenn & I are at the beach this week.  (Sara didn't want to come. Who can blame her?  Who wants to be around this?)  Trying to make a go of "remembering Nick" without losing my mind.  I am not succeeding at this.  It has been very sad.  It will always be sad.  I posted this picture because Nick always loved the beach.  This is a great picture of Nick with his hat and reading....he was always reading something. Such a waste of a great mind.  Nick wanted to make things better for people in this world.  His Nalgene bottle is there by the chair.  We still have that bottle.  Sara uses it all the time.  Nick's scruffy beard, his long fingers.  What strikes me about this picture?  He looks so healthy!  The images in my mind are of the sick days.  Images that are stark reminders of how fast even a healthy, strapping young guy can descend into a frail and ill shadow of his former self.  I am exhausted after two days of being here.  Maybe it wasn't such a good idea to come here.  

Today was the day Nick died at Johns Hopkins hospital.  Today is the day the statute of limitations expires on my ability to bring a lawsuit against those people who did NOT do their job when it came to Nick. That makes me so angry and upset....nothing I can do now.  Just got away with another one J-Hop, you sons of bitches!  Don't act like you don't know what you did and more importantly what you didnt' do when it came to Nick's lungs.  Hey, but no worries though, right?  Just another family devastated by f*cking stupid cancer!  There's a million bazillion of us out there....."nothing we could do, so sorry for your loss!"  WTF-ever....I don't think one doctor even expressed sorrow to me on that horrid, horrid, day...one time, maybe about a year after Nick died,  I was at a concert at Pier Six (Avett Brothers) and I saw one of Nick's doctors...he didn't see me though, didn't notice me, didn't remember me, walked right by....his life goes on.  Mine is shattered into a million pieces.  

How do I pick up those pieces and put them back together?  I can't even find some of those pieces.  The pieces of my life are shattered, frayed, and fractured. I can't put that back together into a "new" picture.  I am crazy.  Crazy with grief and pain that never goes away.  Maybe others are better equipped with skills to cope with this kind of thing, I guess I am not.  I am barely hanging on by my finger nails.  But in this world of "grieving", people don't really notice.  I am permanently maimed but there are no prosthetics for a broken heart. Some grieving people find a place to be that isn't so horrible.  I think I missed that turn off of the grief highway.  Maybe the exit is way farther down the road?  I don't know, but, I know my car is running out of gas and I have lost the map.  Was there ever a map for this kind of journey?  

At 5:40PM today, I guess I will be on the beach with Nick's ashes.  I will sit there and look for a "sign."  Then I will try to figure out how that is supposed to help me.  Later tonight, we are hoping to send up some wish lanterns.  All symbolic bullshit....whatever.  Nick is still dead.  

Not sure how long I will have internet now, so I am posting whatever has spewed forth from my head and heart to this point.  Couldn't sleep last nite so I am running on empty, emotionally and physically.  This is supposed to be a "vacation!"  HA!!!!!!!!  When I get back I will have a shit load of people asking me how my "vacation" was....and wondering why I don't look refreshed and happy. 

Here is a picture of why I won't look refreshed and happy...just one of many "images" burned into my brain forever. My poor boy strapped down in that horrendous radiation mask, upside down, unable to breathe. (His lungs were already bad at this point and he was wearing oxygen full time.)  They had to tape an oxygen mask onto that mask so he could breathe through the treatments.  I don't know how he did it.  His emaciated body still fighting a relentless cancer, while his lungs were being attacked by some "unknown" and undiagnosed killer.  This is the side of cancer most people don't see. They don't want to even think about it.  They have no idea about all this stuff.  It is barbaric and literally torture!  Nick willingly submitted to this and yet even at this point, his life was on a downhill trajectory and all the positive thinking in the world wasn't going to change it.  Perhaps some better medical care would have....all a moot point now. Nick is still dead.  So three years later, here I am...what am I supposed to do? 

Three seconds, three minutes, three hours, three weeks, three months, three years? 

1,095 Days 

Days of sorrow and longing.   

Days of aching pain that is beyond description.

Days of anger and rage. 

Days of stress and anxiety.

Days of waiting for relief that does not come, of answers that won’t be found.  

Days of watching myself decline into a numbing abyss of darkness. 

Days of feeling guilty that I can’t pull myself out of this downward spiral.

Days of missing you at holidays, birthdays, anniversaries, and family milestones.  

Days of watching your friends go on with their own lives, while you will never live again.

Days that feel like nothing has changed, while those of us who loved you will never be the same.

Days of wondering where you are, feeling lost without your love. 

Days without my only son and the stories of his life. 

Days of uncontrollable emotions that erupt from the most painful images of your suffering and your death.

Days of not seeing your smile, hearing your voice, holding your hand, or hugging your neck.

Days of endless mourning for you my sweet boy.  

© bigD  8/13/2012

I love you always and forever Nickolas.  You are well loved and never forgotten.  This however cannot console my broken heart and shattered dreams.  Please come home soon, Mom

Whispering Tree

Dearest Nickolas,
Are you in the clouds? Are you in the blue waters of the ocean or the sea?  Are you sitting high in a tree watching us from above as we scurry through this life below?  Are you in the "great beyond?'  Where is the great beyond?  I want to go there.  I want to be with you.  I miss you so.  My heart aches and the pain of losing you never goes away.  I write these words over and over, nothing changes.  The more things change the more they stay the same....the more they stay the same, the more I want to run screaming from this place...so it would be over and I wouldn't hurt anymore.  There is no mercy, no surcease. There are no answers. I am screaming without a voice in this cave of grief and sorrow.  There is no sound, no echo, just endless darkness.  No escape.  No one to hear the silent screams as tears flow and I continue to lie here.  How long? How long?

Whispering Tree

Oh majestic tree of life

What happens when someone dies?

Does your bough break with the burden of your grief?

Do you weep bitter tears as your roots are torn for the burial plot?

Do the memories provide solace as the headstone is placed in your shade?

Do your leaves cover my baby as he sleeps in the cold ground?

Do you cradle him in your arms with love the way I did?

Do you whisper how much we love him as his spirit sits high in your branches?

© bigD 2012

Box of Stones

Still here. Existing on some level.  Writing does not come easily now.  It takes too much energy to express the same thing over and over and over.  I don't know how I used to write on here when Nick was sick.  I guess it is a good example of the changes in me.  I have no energy to do this now, like I used to back then. Losing your child to the ravages of cancer treatment does horrible things to one's mind, body, and soul.  I am a mess.  I am a shell of my former self...a fragile shell.  I am angry as hell and I am sad as hell too. It doesn't change.  And of course, it's all my own fault. (Mantra repeating in my head..."I must ALLOW my grief to change. I must ALLOW my grief to change.")  As if I ever had control over anything, why would I have control over that?  F*CK allowing anything!  I will allow you to take your stupid ass mantras and stick them where the light don't shine. I like to be alone.  Why?  Because it is better that way...better to stay away from those who have no idea how HORRIBLY PAINFUL THIS IS!  ("The pain will soften with time.")  Yeah right!  How much time we talkin' here?  The next millennium?  There is nothing that will "soften" this pain.  I have tried a litany of things...reading, writing, Compassionate Friends meetings, conferences filled with guest speakers and workshops and hundreds of  "others" just like me.  We have all lost a child, some of us more than one.  A sea of humanity facing a new stark reality;  a sea of sadness and pain.  We are all swimming in it...(cue music: "You gotta swim Swim in the dark There's no shame in drifting Feel the tide shifting and wait for the spark Yeah you've gotta swim Don't let yourself sink Just find the horizon I promise you it's not as far as you think.")  REALLY?  Oh, I am sinking alright.  Sinking like a stone.

Side note:  Even my music player on here is now messed up and useless.  Just another thing to tick  me off.  Why couldn't Nick be like Andrew?  Why? Why?  Why couldn't he be alive?  Why couldn't he be a survivor, a fighter, a winner, a poster boy for the magical cure of bone marrow transplant?  Why couldn't we have our miracle?  Why does this kind of shit have to happen?

Today is July 4th....woo hoo!  Another year of remembering the last fourth of July I spent with Nickolas.  If I never see another firework display, it will be ok by me.  Tried counseling to see if somehow it would "erase" all these images from my mind.  The pain, the sorrow, the unbearable feeling of helplessness, watching your child waste away in front of your eyes. Watching Nick suffer with every single breath he took....apparently my therapist did not know how to do that.  She really had no clue what to do with me...no clue whatsoever...

Statute of limitations on a lawsuit for Nickolas will be up this August.  Two law firms would not take Nick's case.  Dead people don't make good witnesses.  Dead people cannot speak for themselves.  Cases like Nick's are complicated don't cha know!  No way to prove how horrible things were, how failure to listen ultimately led to Nick's death.  I want to go to that stinkin' ass hospital and I want to stand in the lobby and scream at the top of my lungs and then I want to cry and cry and cry as long and as loud as I can for as long as i can.  Do you know that no one cries at that place?  Not in public...you would think there would be a lot more crying going on in a cancer center.  But nope, everything is just so freakin' Pollyanna there, no one cries out loud, not the patients, not the families, not the nurses, certainly not the doctors!  How does this happen?  On that horrible day that Nick "died"  (I mean the day he was "killed"  by giving him high doses of propofol and then taken off the ventilator...you know, the day he died so "peacefully")  while we all stood around like it was a three ring circus...JESUS!!!)  I didn't even CRY!  What the frick was the matter with me? 
                      I HATE THAT DAY SO MUCH!!!
Couldn't even get that day right!  My poor sweet boy, sedated into a coma and yet, he tried to wake up and reach for his sister and god knows what he was thinking or understanding at that moment. Why.....why.....why.....why....why....why....?????????????????????????????????????????  


And then he was gone....and then he was a gone....and then he was gone FOREVER!!
And now he is a pile of white dust sitting in a brown plastic container.   That is all that is left of my child....a brown plastic container of cremated flesh and bone.  If you look you can see the pieces and I wonder was that his leg bone, or his foot bone, or his skull bone?   A mother should not have to wonder these things about her beautiful, first-born child.  A mother should not have to have these things in her brain.  

On August 13, 2012 it will be three years since Nick has been gone from our lives.  The days go by....time marches on, time marches on, let it march, time means nothing to me, but, a life sentence, a prison of grief.  Another Mom wrote this after losing her child..."one day, one year...it is all the same."  Today is 1056 days....1056 days.....1056 days....since my heart was shattered into a million pieces and my life was forever changed.  I am old and tired, scattered and broken, I am beyond saving and beyond repair, I am forlorn and filled with sorrow, I am confused and angry, I do not know who I am or what will become of me.  Most days, I do not even care. 

Box of Stones

My harbor has a boat in it,
The water makes it's way around it,
And when the sun shines down,
The winds, they blow
And I miss you more!

Lyrics "Box of Stones"  Benjamin Francis Leftwich

Memorial Day 2012

I remember the cold December
I remember the star crossed sky
I remember how the moon
It came up singing and it found to dreamers hanging on to the night
I remember walking in the ocean
I remember that look in your eye
I remember the way you stood beside me
When the waves were trying to take you with the tide

I will remember you
And hold on tight through the years
To each moment
When we were together
And the time when you were here

I remember laying in the canyon
I remember when the rain came down
I remember the light from the candle that was burning for a long long time

And I will remember you
And hold on tight through the years
To each moment
When we were together
And the time when you were here

Morning sun midnight chill
Sometimes you are with me still
Oh the memories bring you back to me

I will remember you
And hold on tight through the years
To each moment
When we were together
And the time when you were here

Remembering fallen heroes....Sgt. Joseph M Vanek,  Sgt. John C Osmolski, Captain Jonathan D Grassbaugh, Captain Lee Cornwell III, Captain Maria Ortiz, Staff Sgt. Darrell R Griffin Jr.,  Specialist Ari D Brown-Weeks, and Sgt. Zachary B Tomczak.

My heart aches for all the mothers and fathers who have lost sons and daughters to war.  On Memorial Day and always, I remember those who died in service to this country.  

 Sometimes in tragedy we find our life's purpose - the eye sheds a tear to find its focus.  ~Robert Brault

"I Will Remember You"    Music & Lyrics  Tyrone Wells

Crazy Sad

Crazy Sad

You Know What I Mean

Easter....soon over.
Eggs rolled and deviled.
Baskets found.
You lost forever.
Die cast.
Your death colors my world.
Like a hard boiled egg
Rotting in the sun.
Trampled in the grass.
Hiding from the laughter and joy.
Never put all your eggs in one basket.
© bigD 2012

I love you my son. I miss you so much. When I see a bunny I think of you as my heart continues to long for you. I have no words to express the pain I feel every day.

I, I can't take things slowly
Come let away, that's what they all do
Help me cause I'm feeling shaky
Tell me what's wrong with my brain
Cause I seem to have lost it

Cause I am afraid of the light
Yeah, you know what I mean
And I can't sleep alone at night
Yeah, you know what I mean

Lonely, that's not quite my problem
I have all I need, haven't quite lost it
I try so hard to be happy
Cause something goes on once again

Please, please come and save me
Tell me what's wrong with my brain
Cause I seem to have lost it

Cause I am afraid of the light
Yeah, you know what I mean
And I can't sleep alone at night
Yeah, you know what I mean

Lyrics "You Know What I Mean" Cults

Can't Always Get What You Want

Can't No Preacher Man Save My Soul?

Disturbing memories
Avoiding feelings
Reminded again and again
Trouble breathing
Lost interest
Feeling distant
Emotionally numb
Unable to sleep
Future cut short
Irritable and angry
Watching
Waiting
Why?
My son, my son...you are lost to me forever.

"Waiting is painful. Forgetting is painful. But not knowing which to do is the worse kind of suffering." ~Paulo Coelho

Grim Reaper

Pomme Empoisonnee

Choking on the seeds

of this tainted, bitter fruit.

Struggling for air.

© bigD 2012

When My Time Comes

March on. Do not tarry. To go forward is to move toward perfection. March on, and fear not the thorns, or the sharp stones on life's path. ~Kahil Gabran

As a single footstep will not make a path on the earth, so a single thought will not make a pathway in the mind. To make a deep physical path, we walk again and again. To make a deep mental path, we must think over and over the kind of thoughts we wish to dominate our lives. ~Henry David Thoreau

Nickolas, are you ever coming home?
I need to see you and hold you close.
Please come and walk with me.
I love you always and forever, Mom

The "New Year" has begun and my heart aches to see you every day. There have not been any happy new years since you left us Nick. Every day I ask myself why this had to happen and how I will keep living this way. How?

Heart Failure

Darkness shrouds my heart.
How does it manage to beat
Through so much sorrow?

© bigD 2012

What Are You Doing New Years Eve? by Zooey Deschanel and Joseph Gordon-L...

Missing my son with all my heart. New Year's will never be the same. Nick spent his last New Year's Eve (December 2008) at Johns Hopkins hospital with CNS relapse of his leukemia. Those memories linger, a painful reminder that he is gone forever from our lives. This is our third New Year's without our precious boy. How is that even possible? Glenn & I stay home and make the best of it....Sara is out, I worry something will happen to her. I don't do a very good job of hiding my pain. Why should I have to? This video makes me smile and cry at the same time. I miss you my sweet boy. Nothing will ever be the same without you here. I love you...Mom.

Searching For a Future Good

What is hope? Where will I find it?

1. To wish for something with expectation of its fulfillment.

2. Archaic To have confidence; trust.

1. A wish or desire accompanied by confident expectation of its fulfillment.

2. Something that is hoped for or desired: Success is our hope.

3. One that is a source of or reason for hope: the team's only hope for victory.

4. often Hope Christianity The theological virtue defined as the desire and search for a future good, difficult but not impossible to attain with God's help.

The sudden disappointment of a hope leaves a scar which the ultimate fulfillment of that hope never entirely removes. ~Thomas Hardy

Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence. ~Lin Yutang

Merry Christmas Nickolas, I love you my first-born son. On this our third Christmas without you my heart aches and I cry a thousand tears that flow from the cracks of my broken heart. I carry you with me always. Mom xo

Tiny Tree Wishes

Another Christmas without Nickolas. I wonder how many I shall have to count? What kind of fun should I have without my son here? After your child dies, some words just have to come out of the vocabulary...here is a short list: happy, joy, merry, and celebrate. The pain of losing Nick remains ever present. Why wouldn't it? Losing a child is not something one "gets over." I WILL NEVER BE OVER THIS! It is not humanly possible to stop longing for my son, my future!! It hurts so much every day, the pain of it can take my breath away. Some say this pain will "soften" with time....I say they are full of shit and I have no idea what that means....soften my ass. Meanwhile the happy, merry holidays are still in full swing and I am sick of it all, Can anyone just take a moment, actually stop, and try to imagine how you would feel right now if your child was DEAD? I know way too many families right now who are going through exactly that, trying to figure out how this is supposed to work, once you have lost the most precious life in your world, that of your child. Yes time marches on and I hate that. I don't really give a crap how much time has gone by, I still miss my son every minute of every day. I am thankful for every day that ticks off the calender so this will all be over. It's not just the holidays, every month has a litany of memories from the days of Nick's illness that are relentless in their hold on my mind; but, this time of year is really awful without Nick here. I wonder what it would be like to feel joy again? Do they bottle that stuff? Some days substance abuse seems like a viable option. I just want to stop hurting. I know there is nothing that can take the pain away, except having Nick back here with me. Do they make neon signs with big red letters, that flash the word, "WHY?" I need one of those.

I MISS YOU

Christmas time is here.
And where are you my sweet son?
Sadness overwhelms.

© bigD 2011


N-I-C-K-O-L-A-S

Your stocking hangs there,
Lifeless and without purpose.
Screaming out your name.

© bigD 2011


O TANNENBAUM

The tree is a fake and a fraud
Just like my own miserable existence.
Half the lights are out.
No one seems to know how to fix it.
And yet it stands there tall and overbearing,
Mocking me.
Daring me to take it down and throw it in the garbage.
No ornaments adorn it's screwy, off-kilter frame.
I cannot bear the thought of unpacking, one by one,
All of those memories of happier times.
It takes all of my energy just to erect this monument to former joy.
I stare at it's white lights and wonder how it all came to this.

© bigD 2011

"A tiny tree Christmas, hang the balls with wishes"

I wish you were here my boy. I wish none of this ever happened. I wish I could see you again. I wish I could remember the exact color of your eyes. I wish I could see your smile and hear your voice. I wish I could erase all the horrible memories of your pain and suffering from my mind. I wish I could understand why these terrible things have to happen to children all over the world. I wish everyone could understand how hard this is and how much my heart is aching for my baby. I wish I knew how to fill the gaping wounds in my spirit. I wish you would come home my sweet Nickolas. I wish you could be here to celebrate Christmas. I love you more than a wagon full of puppies. Please come home soon. Your Mama needs you.

Empty

I pack my trunk, embrace my friends, embark on the sea, and at last wake up in Naples, and there beside me is the Stern Fact, the Sad Self, unrelenting, identical, that I fled from. ~Emerson

Another Thanksgiving holiday without you Nick. I have no words to say that haven't been said on these pages before.

My sad self remains....I cannot flee from this pain. There is no where to hide it, no where to put it.
I miss you so much. Nothing is the same since you have gone away Nick. Please come back home. I love you more than a wagon full of puppies. Mom

Spirit Doctors

Staring at a blank page,
How shall I begin?
When will it end.
The pain continues
the sorrow flows like an endless river through my world
The tears still fall,
the memories stab at my heart.
How will I ever forget?
How will I ever forgive those who hurt you?
How will I forgive myself?
When will it stop hurting so bad?
You are fading from me, and as you fade, the anger builds, the pain grows, like a poison slowly damaging my organs and leeching the life from my soul. What can I hope for? What is my future? I don't know. I don't care. On some level I cannot believe that you are really gone. How is that possible? How can it be that two years have passed? You have already missed so much Nick....how will I keep it all straight until I see you again? How much longer can I keep up this ridiculous facade? How long can I wear this mask that everyone talks about? Why do I have to be ok with this? Who actually is stupid enough to believe THAT somehow I am ok now?? Everyone "moves on"....each day someone new and more famous than you dies and there is some news coverage...then they are forgotten too. Being forgotten...is that the worst thing? How many marathons, scholarships, memorial pages need to be created? If I go to a medium will they let me know how you are doing? Why don't you talk to me? Why does everyone else have stories to tell and a multitude of signs that indicate there is an afterlife of some sort and that you are "closer to me now than ever?" Why does this seem like utter bullshit? How many more things can I do to keep you close, how many more butterfly pins, dragonfly pictures, lockets with your picture, books about loss and grief, websites with stories of magical healing and spirit doctors. Playing music that you will never hear. Looking into your room and seeing all your things. There is only pain there now...your phone still rings every now and then, Dr. Frisky calls? Why? Is it a sign? No just a wrong button pushed....no one calls you anymore Nick. Now on the downward slide to the holidays again. This will be the third year without you Nick. I can't do anymore of them. Already trying to figure out what excuses I can offer. How will I explain the unrelenting grip of this grief? Nothing with "happy" in front of it applies anymore. Sleepless nights and days filled with pointless activities. Sucked back into the vortex of an existence that has no meaning for me anymore. I cannot go forward and I cannot have you back. Trying not to think about the future, take one day at a time. Deal with the anger, the sadness; alternating with the awareness that most days I really don't give a shit about anything. Not to many care about what I do or don't give a shit about anyway. Looking in the mirror, wondering what has become of me...watching the sadness etch ever deeper lines on my face and sorrowful circles under my eyes. I feel very old and weary, carrying this burden of grief is exhausting work. Losing you Nick is beyond anything I ever imagined for my life. Why? Why? Why did this have to happen? Wishing I could just disappear into thin air...then maybe I could find you my son and we could start anew.

“I am not bound for any public place, but for ground of my own where I have planted vines and orchard trees, and in the heat of the day climbed up into the healing shadow of the woods.” Wendell Berry

Make A Wish

In the Mountains on A Summer Day by Li Po

(translated by Arthur Waley )

Gently I stir a white feather fan,
With open shirt sitting in a green wood.
I take off my cap and hang it on a jutting stone;
A wind from the pine-trees trickles on my bare head.

This poem reminds me of you Nick. I hope you are enjoying "a wind from the pine-trees today on what should have been your 29th birthday. I miss your sweet smile and your gentle heart. I miss standing next to my tall boy with his big feet and feeling you give me a great big hug. I miss your unconditional love. I miss you my sweet boy. Please come home soon, I need to hug your neck. Do they have birthdays where you are? Today, there are no candles glowing on a cake in celebration of your birth, only candles glowing in the darkness of your room, illuminating the night...in hopes that you will find your way home. I love you son. Mom

These Days

Dear Nickolas,
On the day before you birthday Nick, I think of you and I wonder what it would be like if you were still here. Your birth was such a joyous time. Now this day is forever marred by two horrible tragedy's, the terrorism of 9/11 and your death from lung failure. Why does there have to be so much pain, trauma, grief in this world? I don't understand any of it.

I think back to the day of your birth, twenty-nine years ago, and the hours leading up to your grand entrance into this world. When did I go into labor with you? I know it was eighteen hours of "natural" labor and childbirth that eventually culminated in your birth via C-section. Your dad is telling me it was at 2AM on Saturday, September 11th that my water broke and we rose up out of our beds to get ready to go to the hospital. The Oriole game had gone into extra innings, thirteen innings to be exact, so we had just gone to bed. Twelve hours later at about 2PM, I was hoping I would have a baby in my arms and I would be watching Miss America on TV. Things didn't quite work out like I expected....about the time Miss America was coming on TV, I was in an operating room getting prepped for a C-section. You were a big boy with a big head and you were a stubborn little thing even then. I guess you wanted to stay close to your Mama just a little longer before you came into the world to meet your Dad. Nickolas, I hold you in my heart ever still my sweet son, even as it lies broken in pieces that will not go back together no matter how hard I try. I love you more than a wagon full of puppies. I miss you so much. I wanted to see what you were going to do with your life. I wanted to see your babies and be there grandma. Your life was cut short too soon my sweet son...you had so much to give this world.

If I have a monument in this world, it is my son. ~Maya Angelou

Saving Up To Buy A New Life

Two years...

SEVEN HUNDRED and THIRTY DAYS

Still hurting, still trying to find my way, still with no energy, no direction, no feelings, a strange numbness that I cannot explain alternates with anxiety and a sadness so deep and painful it physically hurts and sometimes takes my breath away.

I have no creative drive anymore...I cannot write and I cannot dance. I am forcing myself to write something on this blog because I need to write something on this day. I am exhausted emotionally and physically and most days I wish I never had to leave my house.

Nick's DEATH has left a void in my life that is so vast, it will never be filled. The painful memories of Nick's battle with leukemia continue to haunt me. My attempts to exact justice on his behalf have proved to be exercises in futility. Those that hurt him will get away with their evil and continue to hurt others in the name of medicine and "curing cancer."

I don't know why this had to happen. I will never understand it. Glenn and Sara and I continue to struggle, each in our own way, and it feels like we are tiny boats set adrift in a sea of tears. We are each paddling in search of some unknown place, with no compass, no map, no direction. Some days the sea is quiet and there is no wind and we gently drift along unaware of the tsunami of water heading towards us. The next day a wall of water swoops down on our little boats overturning them and throwing us into the frigid waters of grief and pain. I have learned to keep my life vest on at all times. I am tired of treading water, my limbs are heavy with the weight of this suffering. Some days I just want to take that vest off and call it quits, sinking into a deep abyss of blessed oblivion. I wonder how much longer I can do this.

In other news...a "new" treatment protocol/clinical trial for leukemia has shown some promise. Too late for Nickolas...too late for us. Read more here.

Where You'll Find Me by Audrye Session

Well maybe I'm a little rough around the edges, around the ends

But lately I'm saving up to buy a new life, a new world
Where your shadow goes when you're asleep
And each happens in symmetry, don't need your eyes open to see
Where nothing can be photographed and time is just a thing you pass
That's where you'll find me

Well today I'm waking up
pass the mistake of falling off
So I'll drink to moving on
And after this life I'll be better off
Where the soldiers pass or play
Fields of flowery graves
With enemies they forgave
Where the daggers and pistols rest next to body bags of ignorance
That's where you'll find me
Find me

Will blow your mind
On a one-way trip to river spine
It's just the worries in me
underneath the words on the hilltop of
That's where you'll find me
Find me

Well maybe I'm a little rough around the edges, around the ends

I love you Nickolas. I love you more than a wagon full of puppies. I am so sorry my sweet son. Please forgive me. Please come home soon. Mom. xoxo