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

Pieces Falling From Me

The holiday is over now. Holidays no longer mean celebration. Holidays are all about the last one that we spent together with Nick. It has now been two years since Nickolas was alive on a 4th of July. Two years ago on July 4th, 2009, we watched fireworks from the window of Johns Hopkins hospital. Nick was in a hospital bed, barely able to breath or move. I remember those days with pain and anguish. I hate that this is where Nick had to spend his last holiday here on earth. I cannot paint a happy face on those moments. The memories haunt. They claw at me without mercy. I don't expect anyone to understand. I have given up on that a long time ago. I walk a path strewn with the shattered remnants of my life. My son is lost to me forever. Damage done. Pieces falling from me.

The Ones We Left Behind

Echo

In the quiet night
Bitter tears fall silently
Swallowed by cold ground.

© bigD 2011

Where's My Sweet Boy?

I continue to stagger through the fog of grief. I am literally lost. I am scared I will never find my way. I am longing for my son more with every passing day. The pain and sadness burns like acid on the skin eating away what is left of my heart and soul. I have no energy to explain...maybe the article below by Dr. Joanne Cacciatore will give insight.

So, what is the real story- the one I wish Hollywood would tell- so the non-bereaved could really experience the truth about grief after the death of a child?

- I wish they would tell the story of how every single cell in our body hurts. Literally, it hurts from tip of our toes to the ends of our hair. The pain is indescribably physical and as merciless as the Mayan heart sacrifices of its helpless victims.

- I wish they would tell how difficult even basic bodily functions are: drinking becomes work as our throat is constantly tight and closes off to water, or food, or oxygen, or sustenance. Or how we are unable to carry groceries or children or the sadness in our arms as they ache with the phantom weight of our children. Or how we cannot breathe because of the concrete slabs on our chest, heavy and dense and gray. Or how our legs buckle and we cannot bear to see other children, especially the ones who are their age and with their names walking gleefully with their parents; parents who may or may not take a moment or two for granted but who will tuck them into bed tonight as we lay sobbing, our salty tears saturating the shag carpeting, in our dead child's room.

- I wish they would tell the story of how, on the rare occasion when we do sleep, we awaken in the morning, nearly every morning, wishing we hadn't.

- I wish they would tell the story of how we look in the mirror at our unrecognizable self every day and wonder at the stranger we see.

- I wish they would tell the story of how our primal mourning is most often done alone and that the supernatural sound of this mourning frightens us, like an wild animal being killed and eaten or like the flogging of human flesh or like the torturing of a prisoner or like Satan being cast from G*d's presence.

- I wish they would tell the story of grief's incessant madness: pacing the hallways late at night, the inability to focus on anything, the intolerance of music, or laughing, or expressions of joy, sensitivity to lights and other benign stimuli, racing video tapes that replay in our heads as we wish-for-changed outcomes, the constant self-accusations of blame and responsibility, the unconscious roulette of risk with Death as our challenger.

- I wish they would tell the story of how we are terrorized by insidious thoughts of our other children dying, and we either over-protect to maintain illusory control or under-love to maintain illusory protection from recurrent grief.

- I wish they would tell the story of how this brings us to our knees. On the floor. Face in the dirt. Begging and pleading for a different life. Willing to do anything, anything to turn time back and go through another door. Or how we fantasize about time machines and contemplate self-institutionalization.

- I wish they would tell the story of a pain so deep and so wide that no word in the English language can begin to express it. That no subsequent child, no new job or house, no distraction- no pill- no drug- no G*d- no joy- no self-induced suffering is sufficient to fill the chasm of the loss.

- I wish they would tell the story of how we pray, even in the absence of a belief in a Creator- we pray, that the suffering would end, by any means.

-I wish they would tell the story of how well-meaning others cause us to recoil with their platitudes and mindless remarks about G*d's will and His garden, the one which needs tending, and something idiotic about making lemonade.

- I wish they would tell the story of how this mother and that mother and this father and that father would have given their life in a moment to save their child, and that we continue to negotiate that with a G*d in whom we may or may not believe for months or even years.

- I wish they would tell the story of how life goes on but that everything has changed, and that we have died in a sense, and must choose to be reborn.

- Mostly, I wish that they would tell the story of a bittersweet survival that does not include a fallacious or contrived "end" to the grief after a prescribed six months. This is not reality for most of us. Yes, I wish they would tell a true story of the anguish absent the "happy" ending. Not that we, at some point, aren't capable of pure love and joy and contentment. In fact, having really "looked into the eyes of such sorrow" is the only way to such pure joy, as Gibran says. But there is no bypassing the tortures of child death, it's effects perennial and relentless for much longer than the unsuspecting world believes.

And there is so much more I wish they would tell.

I wish they would tell the story because I wish others knew. Certainly, if the others knew, they would have to be kinder, more compassionate, more loving to bereaved parents. Wouldn't they?

Posted on Facebook by Dr. Joanne Cacciatore

Memorial Day 2011

Please go HERE to read a story by Alex Horton about Memorial Day.

He says it way better than I ever could.

P.S. - I realize that Memorial Day was on May 30th. I was hoping to get this post in under the wire, but these days everything I do is off. Just read the story anyway, please.

Man Overboard

Ships adrift at sea
Ghost children, fallen overboard.
Dark, murky waters.

© bigD 2011


Mother's Day is over now.
My daughter is here, but my son is not. I am torn between two worlds. How does one keep living this way? The pain of losing Nick, the longing for my son, the hole in my heart...when does that change?

I believe the answer is never.

"You can only lean on me for so long
Bring your ship about to watch a friend drown
Stood over the ledge
Begged you come down
You can only lean on me for so long

So sorry it's over
So sorry it's over

There's so much more that I wanted and
There's so much more that I needed and
Time keeps moving on and on and on
Soon we'll all be gone

Man on a mission
Can't say I miss him around
Insider information
Hand in your resignation
Loss of a good friend
Best of intentions I found
Tight lipped procrastination
Yeah later
See you around."

(Lyrics Blink 182 "Man Overboard")

Lost In My Mind

Grief Calls Us to the Things of This World by Sherman Alexie

The morning air is all awash with angels . . .
Richard Wilbur                                       

The eyes open to a blue telephone
In the bathroom of this five-star hotel.       

I wonder whom I should call? A plumber,
Proctologist, urologist, or priest?

Who is most among us and most deserves
The first call? I choose my father because

He's astounded by bathroom telephones.
I dial home. My mother answers. "Hey, Ma,

I say, "Can I talk to Poppa?" She gasps,  
And then I remember that my father

Has been dead for nearly a year. "Shit, Mom,"
I say. "I forgot he’s dead. I’m sorry—

How did I forget?" "It’s okay," she says.
"I made him a cup of instant coffee

This morning and left it on the table—
Like I have for, what, twenty-seven years—

And I didn't realize my mistake
Until this afternoon." My mother laughs

At the angels who wait for us to pause
During the most ordinary of days

And sing our praise to forgetfulness
Before they slap our souls with their cold wings.

Those angels burden and unbalance us.
Those fucking angels ride us piggyback.

Those angels, forever falling, snare us
And haul us, prey and praying, into dust.

Poem reprinted with permission from hangingloosepress.com
the poetry publisher for Sherman Alexie

Funny In My Mind

On this road to nowhere,
Time is all I've got.
Ticking like a bomb.
Welcoming the explosion.
Life slips through my fingers,
Like an hour glass full of empty promises.

Birds falling from the sky
Don't know why they die.
Life is very short or so they say.
Searching for the key
To unlock this mystery
I'll sit in this cage and wait for your return.

Broken hearts still beat.
"Keep calm and carry on!"
Wishing I could slide into the sea.
Your voice whispers through the trees,
"I love you Mom."

Swallow

This is a letter I wrote to Nickolas on October 19, 2010. I still have flashbacks to these times. I still have so many sad memories around food and Nick's desire to eat so badly and yet, he struggled to eat and continued to lose precious pounds. If there is one story about Nick and food during his time fighting his leukemia, there are probably one hundred. I don't know what to say anymore. I am so tired. The memories so painful...

Dearest Nickolas,

I am thinking of you this morning, well, really this afternoon. Whenever I am here alone, I think of the mornings it would be just you and me here in the house; a treasured day, when we didn’t have to go down to the hospital. A day we could just stay home and enjoy the time together away from the pain and the sorrow of the clinic.

I remember we would both sleep in and sometimes I would even get up before you because you were lying in your bed reading or thinking or just taking your time to think about getting up.

I remember when I would try to cook you breakfast, sausage or toast or something, usually with hot tea.

I remember when we would watch Price Is Right on the tv and we would try to guess the prices and see who was right.

I remember feeling so good to have you near and have you home, snuggle up on the couch.

I remember how you would like to watch the birds out of the window and we would listen to their voices singing and the blue jays squawking.

I can picture you wearing your blue furry shirt and your knit cap.

I wish I could remember more…it doesn’t seem like much. It makes me so sad. I miss you so much.

It was always so good to have you at home where you belonged. I remember how you always looked forward to eating whatever your Dad would fix for you.

How sad that “eating” has to become a treasured past time that we learn we have taken for granted, as you wasted away to skin and bone, while your lungs were dying even as we all chewed and swallowed the lumps in our throats and the pain in our hearts.

I love you my sweet son. I miss you more with every passing day. Please come home soon. Mom

Had Enough

Thinking back...almost 600 days since last I had you with me my sweet son. I have been so sad these past weeks. I think back to March and April of 2009, fifty-eight days spent in that horrible hospital. No one understands. I am a ticking time bomb of emotions that lie buried deep in my soul, waiting to erupt. I am so tired, tired of this heartless and cruel thing that is life.
I was going to post a "nice" little something that I wrote last October, maybe another day. Not today. I wanted to find a picture of you trying to eat the precious food that you loved and craved so much. I found this one and the memories of those days come rushing back. It is as if I never left that place, even as I tried to never leave your side and now we are apart for far too long already. This was only the beginning of how bad things were going to get. My handsome boy...wasting away. Trays of food came to your room every day like clockwork, and yet, you could barely eat any of it. The pounds fell away from your body, like the hair from your head and the life from your soul. So many painful memories of that horrible time. The sadness in your eyes when I look at pictures of those days. What were you thinking of all this? Days marching by while you suffered endless treatments and your lungs worsened with each passing day, right under the noses of those ridiculously righteous doctors who acted as if they knew everything, but instead they knew nothing. They didn't know how much we loved you and how much we wanted you to be well. They didn't know how smart you were or how strong and brave you were. They NEVER LISTENED!!!!! You deserved the best care in the world Nick. You deserved the best. Their best was pathetically inadequate and now you are DEAD and they still don't care. I wonder when was the last time one of them thought of you Nick? Did they know how much you loved your Dad and your sister and your Mama? Did they know of your plans and hopes and dreams for the future? Did they know how much pain you endured? Did they ever wonder how scared you might be? I hate them all. I hate them for letting you waste away, while they pretended it was all perfectly normal. I have no good thoughts or happy endings, only a nightmare filled with pain and never ending sorrow. I want to see them suffer the way that you did...I want to take away their food and watch them suffer a long, slow and painful death. I want to take away the air that they breathe and watch them turn blue and suffocate, while being told they are "deconditioned" or "anxious." I want them to understand the pain and suffering they have caused in the name of finding cures, doing research and turning out more uncaring doctors who think they know everything.

“Revenge is a confession of pain" ~Latin Proverb

All the old knives that have rusted in my back, I drive in yours. ~Phaedrus

Bring You Down (Lyrics by Red Delicious)

Last night I had a revelation
Somehow I have to make you pay
It's all about manipulation
And what it takes to get my way
I don't believe in soft solutions
No one makes a fool of me
Without receiving retribution
No one hurts me and goes free
I'll play on your fears, I'll leave you in tears
You'll never be the same, my friend
You're walking a line, it's a matter of time
You'll never rest easy again
I've got the power to bring you down
I've heard it said, to err is human
It's forgiveness that's divine
I thought about forgiving you, but
I want revenge, I want what's mine
I think it's time to settle scores now
It's time to set the record straight
You'll know it's coming, you won't know how
Or when, you'll have to watch and wait
I'll play on your fears, I'll leave you in tears
You'll never be the same, my friend
You're walking a line, it's a matter of time
You'll never rest easy again
I've got the power to bring you down
You know, it feels intoxicating
To be intimidating
It's invigorating
To see you shaking
I've got the power to bring you down
You know something, you see it coming,
You know I will stop at nothing

Last of Days

Something causing fear to fly
Rising like a dark night
In silence
Traveling like a broken boat
Heading for the sky
And I'm an island

I watched you disappear into the clouds
Swept away into another town

The world carries on without you
But nothing remains the same
I'll be lost without you
Until the last of days

The sun is in the east,
Rising for the beasts
And the beauties
I wish that I could tear it down,
Plant it in the ground to warm your face

I built myself a castle on the beach
Watching as it slid into the sea

The world carries on without you
But nothing remains the same
I'll be lost without you
Until the last of days
Until the last of days

Through walls and harvest moons
I will fight for you

The world carries on without you
But nothing remains the same
I'll be lost without you
Until the last of days
Until the last of days

I miss you Nick. I love you more than a wagon full of puppies. Please come home soon. Mom
(Song & Lyrics "Last of Days" by A Fine Frenzy)

All That Time Wasted

I have no words.

The pain is what I know.

The endless longing.

Sadness is my constant companion.

Staring into a void so deep,

the tears I cry, for the

rest of my days,

will never fill it up.

~ bigD © 2011

I've changed my mind. I don't want to do this anymore. Please come home my sweet son. I miss you so much. I love you always and forever. Mom

Everywhere I Go

Cardboard Dreams & A Box of Twine

Everywhere I go there are reminders of you.
Baseball cards for sale on a counter.
Memories of you as an innocent young boy.
Happily playing with cardboard dreams.

Your room holds all your childhood treasures still.
A little man carved out of wood.
A crazy drawing with a rabbit.
Magic cards, buttons and twine.
Nana's stories about you and Mr. Tim SunnyBear.

Your room holds the story of your journey from boy to man.
Your books from college.
All those years spent studying for your degree.
Pictures of Pip and Nana, your Dad and Shu-sha.
Pip's ties and your first real suit hang in the closet.
A tool chest full of things you might need to fix something
sits under your bed.

So many books.
All the things you wanted to learn.
Your mind was never idle.
Bracelets from Ecuador.
And hats...lots of hats.
Music is everywhere.
Your guitars stand in the corner, forgotten and alone.
Do they miss you like I do?

Everywhere I go I find pieces of you.
A box full of twine, all wrapped up neat and tight.
When I found that box I cried and I closed it back up.
I couldn't throw that away. Not yet. Not now.
That was just you.
Like the time you took the strap on my ipod case and you
wrapped into a nice neat circular thing that still hasn't come apart.
If only I could have wrapped you to me like that,
would you still be here with me now?

Everywhere I go there are reminders of your leukemia and the battle
we fought so hard for so long.
Your gray scarf lies on your pillow.
It was just a scarf until you had to use it to shield your eyes from
the harsh light of hospital ceilings and
the harsh reality of the surreal world of cancer.
Thermometers lying about like fallen soldiers in our lost war.
A gallon size fortress of medicine bottles at the top of the stairs.

Everywhere I go I am reminded that you are gone.
You are not in your room, or with your friends, or at work.
You are not anywhere that I can find you.
Candles are burning around what remains of your physical body.
The rosary you held in your hands each night at the hospital is there too.
The blanket given to comfort you sits idle and with no purpose.
Your pictures remind me of what has been lost.
Your eyes, so sad and wise, pierce my heart.

Everywhere I go I see young men that are now the age
That you should been.
I wonder where they are going.
What they are doing with their lives?
I wonder what you would be doing with yours.
I wonder what things we would be doing together.
I wonder what it would be like to hear you say,
"I love you Mom" just one more time.

Everywhere I go the pain of losing you grows deeper
This dark spot needs to be cut out.
Like a piece of rotting fruit
I don't think this one can be saved.

© bigD 2011

I Am One Who Lost A Son

Eighteen months ago on August 13, 2009, my sweet son left this earthly world. The pain of losing Nick continues to be a part of my every waking moment.
The events leading to Nick's death haunt me and and remain in the forefront of my mind. While it seems an eternity since I have seen my sweet boy, the days, weeks, and months that have led to this point seem like just yesterday. They are as fresh in my mind as the day they happened. I struggle to make sense of a "senseless event." Let me rephrase that, I struggle to make sense of the traumatic nature of Nick's journey through the world of leukemia and bone marrow transplant. I have no way to explain the ongoing anger and regret I have about so many things that happened at the hands of "world renown physicians" in their world renown hospital. I am like a rat trapped in a maze. The horror movie that Nick lived runs through the theater of my mind on a continuous reel. I feel helpless and hopeless to conquer these feelings. How am I supposed to go on living my life with this cesspool of emotions fermenting in my brain?

I continue to have disrupted sleep patterns. I don't want to go to sleep because when I lie down in my bed the thoughts, the memories, the SADNESS becomes overwhelming. I have memory issues and I cannot focus. I am easily triggered to a raging, angry, cursing maniac or a blubbering idiot over the least little thing. There is no rhyme or reason to this roller coaster of emotions. I don't know what people think, I only know I put on a mask when I go out the door and I pretend until I can come home. I am not fine. I am not OK. I know I will never be the same.

I continue to grasp at anything that will "help" me. I read books on grief and loss. They validate me and find solace in the pain of others. I go to my Compassionate Friends meetings and I go to their on line chat rooms. They have been a lifeline to me. Although, I have learned that the pain of this loss will never go away. If I am lucky it will "soften" with time...years and years of time. If I am gracious and wise, I will learn to accept that those who have never lost a child will never understand. Most times I am not gracious and wise, I am just angry and frustrated that I must live the rest of my life without my son. My heart is forever broken and the scars are carried for a lifetime. My world is dark and gray.

Last night I started to read another book called "Lament For A Son" written by Nicholas Wolterstorff. Mr. Wolterstorff lost his son Eric at age 25 in a climbing accident. I was only into the preface when the tears started flowing. After about ten more pages I had to stop reading. The words he wrote about his son touched so many places in my heart, I could not stop crying. In those few pages, Mr. Wolterstorff's was so on point to the issues a parent experiences when losing a child, I just want to type the whole book right into this blog post right now. I had the same feelings with Dr. Gordon Livingston's book, "Only Spring." Dr. Livingston wrote this book about his son Lucas who died of leukemia at age 6 after a BMT at Johns Hopkins!! Talk about deja vu reading that book! It is not a very long book but it took me forever to read it because I could not stop crying!!! Now there's someone who understands what it is like to lose your child to the horrors that go on with leukemia treatment, and in particular, bone marrow transplants! Lucas had his transplant eighteen years ago and it sounded like the science hasn't progressed at all.

Here is a quote from "Lament For A Son" that I think really says it all:
"Grief is existential testimony to the worth of the one loved. That worth abides."
When a parent loses their child, they must OWN their grief. That is all that have left to pay tribute to their child, to acknowledge that their child existed in their lives. And so it is for me.
As Mr. Woltertstorff states so perfectly, "I own my grief. I do not try to put it behind me, to get over it, to forget it. I do not try to dis-own it. If someone asks, "Who are you, tell me about yourself," I say - not immediately, but shortly, "I am one who lost a son." That loss determines my identity; not all of my identity, but much of it. It belongs within my story."

Every parent who loses a child struggles to find this new identity. Who am I now that I have lost my son? Who am I now that I have buried my future? How will I find a way to weave this loss into the fabric of my life going forward? How long should that take a person? What is a good time frame to redefine everything you thought you knew about your life? It has taken me the better part of a half century to get to this point in my life. I thought I was on cruise control...I was ready to watch Nick's life as an adult unfold. I was not ready to lose this wonderful and marvelous person from my life!! How dare anyone think I should be ready to "get on with my life?" I feel as if I have been pushed off a high cliff and I am free falling into a dark abyss. Where is the bottom? Do I want to pull my chute? How do I find the cord? What if the chute doesn't work? Will I be able to go and see my boy again? As Sara said to me today, "I want my old life back." Me too Sara...me too!

I love you my dear sweet boy. I want you back so badly. Please come home soon so I can hug your neck. I miss you more than all the start in the sky. Mom

"My Baby's Gone" - The Louvin Brothers (Cover)

Hold back the rushing minutes
Make the wind lie still
Don't let the moonlight shine
Across the lonely hill
Dry all the raindrops
And hold back the sun
My world has ended
My baby's gone

The Milkman whistles softly
As he comes up to my door
The Mailman brings the letters by
Just like he did before
They seem so busy all day long
As though there's nothing wrong,
Don't they know the world has ended
My Baby's Gone

I wake up sometimes in the night
And realize you're gone
And then I toss upon my bed
And wait for day to come
I try to tell my lonely heart
It must go on alone
But it cries the world has ended
My Baby's Gone

Cover by Elliot Road in remembrance of the recent passing of Charlie Louvin. Check out the Face Book page of Elliot Road here.

Listen To Your Mother

Seattle Cancer Care Alliance | Transplant Program at SCCA Ranked First in One-Year Survival Rates

This is why Nickolas needed to listen to his mother and go to Seattle for his transplant. I know in my heart that Nick would be alive today if we had gone there for the transplant.
I hate knowing that we made the wrong decision. A decision that cost Nick his life.

Bitter Pill

Pills in all shapes and sizes.
Adverse effects scream out from every bottle.
Pills for nausea, pills for pain.
Pills for every occasion.
Pharmaceutical salvation from a living hell.

So many pills that a bag is required to carry them all.
Here is your "blue bag" they say,
and thus, the damned are separated from the living.

Pills to swallow on precise timetables.
The bitter taste burns the tongue and sears the throat.
Pills that were supposed to heal,
Instead they tortured and killed.

Bottles of magic gone rogue.
Someone switched the potions.
Round and oblong in
Toxins spilling out.
Damaging my sweet boy,
Stealing him from me.

Now the bitter pill is mine.
It is caught in my throat.
I am choking on the pain.
I cannot breathe.
How many can I swallow?

bigD © 2011

Troubled Sky

Snow Flakes

by Henry Wadsworth Longfellow

Out of the bosom of the Air,
Out of the cloud-folds of her garments shaken,
Over the woodlands brown and bare,
Over the harvest-fields forsaken,
Silent, and soft, and slow
Descends the snow.

Even as our cloudy fancies take
Suddenly shape in some divine expression,
Even as the troubled heart doth make
In the white countenance confession,
The troubled sky reveals
The grief it feels.

This is the poem of the air,
Slowly in silent syllables recorded;
This is the secret of despair,
Long in its cloudy bosom hoarded,
Now whispered and revealed
To wood and field.

Darkness All Around Us

Every time I hear the song "January Wedding" I cry.
No wedding for my handsome boy Nickolas.
No proud parents of the groom.
I won't be dancing with my son at his wedding...
I am drowning in a sea of shattered hopes and dreams.

Partial Lyrics from January Wedding by The Avett Brothers

I hope that I don't sound to insane when I say
There is darkness all around us
I don't feel weak but I do need sometimes for her to protect me
And reconnect me to the beauty that I'm missin'
And in January we're gettin' married

No longer does it matter what circumstances we were born in
She knows which birds are singin'
And the names of the trees where they're performin' in the mornin
And in January we're gettin' married
Come January let's get married

Faded Epitaph

Grief wields it's broad sword.
Darkness envelopes me now.
My spirit broken.

bigD © 2011

Pedaling Hard

Two years ago on Christmas, Nick said he wanted a bicycle. Of course, we all hoped it would not be long before he was riding his bike all around the town. Having no idea what kind of bicycle Nickolas would want, I made him a card. The card said "A Gift Just For Nick" on the front. On the inside I pasted some pictures of old-time bikes and then I added these two poems. The first reminds me of the joy that Nickolas would always find in everything he would do. I can see him now careening down a hill on that bicycle. The second poem is more poignant and reminds me of how hard we all fought to hang onto any glimmer of hope we could find that Christmas. I pray that Nickolas is riding fast and free through the blue sky of day and the starry sky of night. I love you more than a wagon full of puppies my sweet boy. Mom

Going down Hill on a Bicycle, A Boy's Song
By Henry Charles Beeching

WITH lifted feet, hands still,
I am poised, and down the hill
Dart, with heedful mind;
The air goes by in a wind.

Swifter and yet more swift,
Till the heart with a mighty lift
Makes the lungs laugh, the throat cry:--
'O bird, see; see, bird, I fly.

'Is this, is this your joy?
O bird, then I, though a boy
For a golden moment share
Your feathery life in air!'

Say, heart, is there aught like this
In a world that is full of bliss?
'Tis more than skating, bound
Steel-shod to the level ground.

Speed slackens now, I float
Awhile in my airy boat;
Till, when the wheels scarce crawl,
My feet to the treadles fall.

Alas, that the longest hill
Must end in a vale; but still,
Who climbs with toil, wheresoe'er,
Shall find wings waiting there.

A Poem, a Bicycle, a Bird

by Naomi Shihab Nye

A boy told me
if he roller-skated fast enough
his loneliness couldn’t catch up to him,

the best reason I ever heard
for trying to be a champion.

What I wonder tonight
pedaling hard down King William Street
is if it translates to bicycles.

A victory! To leave your loneliness
panting behind you on some street corner
while you float free into a cloud of sudden azaleas,
pink petals that have never felt loneliness,
no matter how slowly they fell.

Visions of Sugar Plums

It does not feel like Christmas in my heart.
I have no joy.
I wonder if I will ever again feel anything but the pain of losing my sweet son.

Nick's spent his LAST Christmas in December of 2008!!! When I think of that Christmas there are so many feelings. There was a sense of overwhelming sadness that this might be Nick's last Christmas. The fear and worry because Nick was NOT feeling well at all. The constant battling with the doctors to let them know that SOMETHING WAS WRONG! And always the guilt that I didn't do more to keep Nick safe and get him well. Here are some of the entries I wrote leading up to Christmas and Nick's leukemia relapse, which was a devastating blow to ALL of us and which ultimately ended up pushing his lung issues onto the back burner, which I believe led to his untimely DEATH from the doctors FAILURE TO RECOGNIZE SYMPTOMS AND THEIR FAILURE TO DIAGNOSE NICK'S LUNG PROBLEMS! Words written in red are my comments now on my notes from back then.

Monday, December 15th, 2008 -
Took prednisone 10mg today. Tomorrow should be off. Nick seemed very down today...quiet, spent day at home, but, did not work on Kate's quilt. Seemed sad & withdrawn,but, did not want to talk about it. :( Not sure if it's the withdrawal of the steroids??

Tuesday, December 16th, 2008
Nick punky all day. Went to breakfast at Fallston Diner. I went on my way to shop and studio. Nick went to try to get gel capsules and shop briefly, then home to watch Homicide. Nick laid on couch all day, tired. Face & eyes puffy, frontal and temporal headache most of day. Cough continues to be of concern to me!!!!! No fever. Emesis after went up to bed (Chinese food and coughing jag?) Had to repeat evening meds.
This is Nick's first day OFF steroid (10mg) in his week of alternate on/off. Not sure that this is the sole cause of problems. I am worried about the cough & cold that has been lingering for going on three weeks now. Worried that counts are not up and maybe even further down. Sinus infection??? We head to doctor tomorrow, so I hope Frosty can shed some light on this situation.

Wednesday, December 17th 2008
Nick still does not look good to me...face puffy, eyes puffy. Headache is gone for the moment. Appetite is decreasing somewhat. Today is on day for steroid. Will discuss with Frosty all the concerns of this past week!!
Seen by Dr. Frosty - chest CT done - clear. Magnesium low 1.2 - received 4mg IV over 2 hours. Long day at the Hop! ANC still dropping 860? Spoke with another attending (name??) still want to watch and wait...I'm Ok with that. (Note: CT was clear for infection, but this is when pulmonary function tests should have been done per the algorithm for pulmonary complications of BMT!)

Monday, December 22, 2008 -
Nick up all night with itching of hands, feet, back & chest. Did not sleep most of night (per Nick) came downstairs at 0630, slept on couch for a good while. Spent most of day on couch, general malaise...did not do anything, appetite way down! :( Did not work on Kate's quilt. No fever, unable to verbalize physical symptoms or other issues.

Wednesday, December 23rd, 2008
Nick's Mg level 1.1 - needed IV Mg 4mg. Went home due to airport Gems trip, Nick drove himself back down to Hopkins. Margaret called five minutes after we got in the door to say Nick's Mg was low and he needed to come back. Nick spoke with Frosty while getting his IV.

(Note: This was a TERRIBLE day. This is a great example of a "guilt" fest. I wanted to bag my trip to the airport, Nick wanted me to go. Instead of waiting at the clinic for Nick's Mg level, we decided to drive home and hope that the level was OK. If it wasn't OK, the plan was for Nick to drive himself all the way back to the hospital and for me to go to the airport. Of course, as soon as we walked in the door to the house, they were on the phone telling Nick he had to come back.
I wanted to drive him back down, but Nick insisted he was OK to drive himself. In hindsight, knowing he would soon be admitted for a CSF relapse of his leukemia, which explained one of the reasons he was feeling so CRAPPY and kept having such bad HEADACHES, Nick was in no condition to be driving himself anywhere. But in usual Nick form he wanted to do it and he could be quite stubborn when he wanted to be and as Mom I had to let him win some of these battles, but later I felt quite guilty about the whole ordeal! My poor sweet boy. God bless his heart.)

Thursday, December 25th, 2008 -
Nick not feeling well today. Very tired, spent most of day lying down or napping. C/O headache throughout day. Temperature 37.6 for high. Some itching of toes in late evening. Dreaming of combat fighting...reports thinking he was "kicking the bedroom window." Too tired to work on Kate's quilt. Peterson's over most of day. Remains congested with cough.

(Note: Nick was supposed to go to dinner with Kate's family on Christmas night. When he said he didn't feel well enough to go, I knew that was a bad sign.)


Friday, December 26th, 2008 -
Nick still not feeling well, .... emesis x i in morning, still tired and looking terrible to me. Also with tinnutis/pain in both ears (right greater than left) headache (frontal & temporal), questionable sinuses??, no fever
Called outpatient department and talked to triage nurse, she said to keep pushing fluids watch and wait.
(Note: WAIT FOR WHAT FOR GOD'S SAKE!!!! FOR SOMEBODY DOWN AT THAT GD HOSPITAL TO SEE HOW SICK NICK WAS AND BRING HIM IN FOR AN EVALUATION???? OH MY GOD HAVE MERCY!!!)
Nick went to see Dr. Diehn about his ENT issues. Dr. Diehn did not find any signs of infection...however, Nick has hearing loss in his right ear!!! Therefore the ringing??

Saturday, December 27th -
Nick woke up at 5:30AM - BR, then upon returning to room got very dizzy "like I was drunk" and the room was spinning...proceeded to vomit.

Went back to sleep then woke up and drank some water...that did not sit well and he threw up again. Then he came downstairs and had some toast for breakfast.

Later he took his medicines (Omeprasole, Valtrex and Gleevac) and then threw up again around 1:45PM. Not keeping up with fluids, no void since this 5:30AM

Called Hopkins - Dr. Daniella called! Yeah...so happy it is someone we know!

Other symptoms that continue: headache, tinnutis, right ear pain, cough, cold with blood-tinged mucous, dizziness and vertigo. Pale/pasty lips, still with puffy eyelids.
Still no fever....36.5 today so far.

It is now 3:45PM - waiting for Dr. Daniella to call back!
****************************************************************************************

Dr. Daniella called back...wants Nick to be admitted to 5A
We pack our gear and head for points south.

Nick very wobble and unsteady on his feet. Used wheelchair to get up to 5A.
Admitted to Room 5A-07. Admitting nurse - Jill Night Nurse - Irena

VS on admit - remains afebrile?? BP with some orthostatic changes noted. Sitting = 125/80's?? Standing = 109/60's HR went up with change...HR still 100's

WEIGHT - down to 151 pounds on admit (160 lbs. on 12/10/08!!! :(

(Note: WHY WAS NO ONE CONCERNED ABOUT A NINE POUND WEIGHT LOSS IN TWO WEEKS? THIS TREND WOULD CONTINUE FOR THE NEXT SEVEN MONTHS!)

Nick with labs drawn, IV started. Received 2 liters of NS overnight. Mg. x i for Mg. level of 1.1 Other labs unremarkable....don't have set from 12/23 to compare

Fellow covering wanted to start Prednisone for gut GVHD (due to vomiting?) I requested that they do not start unless they talk to the GVH team first. Dr. agrees to hold off on starting steroids

Nick took a po Ativan before we left for Hop, no emesis while I am there, however, has one emesis early in morning? Also, only one void that evening = only two voids for day!

Start to stay on 5A not off on good foot due to issues with nurse's and going behind the nurse's station; also drew Tacrolimus level even though he had already had dose....

FOUR MONTHS SINCE BONE MARROW TRANSPLANT!!!!

This was the beginning of a horrible, painful and emotionally traumatic admission for Nick. Nick would spend his LAST New Year's Eve and New Year's Day in the hospital. The news of Nick's CSF relapse was devastating and it was on this admission that Nick's CXR showed the first signs of his impending lung failure. These signs were pushed aside and forgotten in the downhill slide that would become the rest of Nick's life. Every detail of every day is seared in my memory. When I choose to recall them, they seem like yesterday.

My mother's heart aches and cries out for what Nickolas had to suffer over the weeks leading up to his last Christmas on this Earth. The words "Merry Christmas" will never mean the same thing in my life ever again.