Dancing on Thin Ice

Can't No Preacher Man Save My Soul?

2012-02-07T01:56:00.006-05:00

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

2012-01-30T02:32:00.004-05:00

Pomme Empoisonnee

Choking on the seeds

of this tainted, bitter fruit.

Struggling for air.

When My Time Comes

2012-01-07T01:54:00.008-05:00

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...

2011-12-31T21:03:00.001-05:00

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

2011-12-25T02:25:00.003-05:00

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

2011-12-24T02:05:00.004-05:00

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

2011-11-24T22:32:00.002-05:00

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

2011-10-10T02:26:00.003-04:00

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

2011-09-11T02:39:00.007-04:00

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

2011-09-10T20:26:00.006-04:00

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

2011-08-13T02:07:00.007-04:00

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

2011-07-05T01:36:00.003-04:00

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

2011-06-23T02:00:00.003-04:00

Echo

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

© bigD 2011

Where's My Sweet Boy?

2011-06-13T01:11:00.004-04:00

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

2011-05-31T02:02:00.004-04:00

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

2011-05-09T01:19:00.003-04:00

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

2011-05-04T02:29:00.004-04:00

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

2011-04-25T02:32:00.004-04:00

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

2011-04-13T02:31:00.005-04:00

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

2011-04-04T01:55:00.010-04:00

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

2011-03-26T01:59:00.000-04:00

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

2011-03-13T03:01:00.004-04:00

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

2011-02-20T02:55:00.006-05:00

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

2011-02-14T00:29:00.004-05:00

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)

2011-02-06T01:17:00.003-05:00

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

2011-02-03T22:59:00.002-05:00

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

2011-01-21T02:05:00.005-05:00

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

2011-01-11T15:00:00.001-05:00

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

2011-01-05T03:32:00.003-05:00

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

2011-01-01T02:05:00.002-05:00

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

bigD © 2011

Pedaling Hard

2010-12-25T23:28:00.003-05:00

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

2010-12-24T23:29:00.003-05:00

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.

Who Cares?

2010-12-15T23:35:00.005-05:00

The Ghost of Christmas

In Christmas past, there was warmth and joy,
My family was whole, with a girl and a boy.
With sweet little Sara, and jolly Saint Nick,
The years just flew by until someone got sick.

Now Christmas present, I am torn apart.
A cold wind blows through my broken heart.
There is no joy, only gut-wrenching pain,
that no one can see, understand or explain.
Without my sweet boy, I am lost. I feel bad.
Who knew that Christmas could feel quite so sad?

What Christmas future? Too blind to see.
My eyes have been opened to true misery.
World spinning madly, along for the ride.
Nothings the same without Nick by my side.

bigD © 2010

Jingle Hell

Jingle bells, jingle bells, jingle all the way.
How can I explain to you how sad I feel each day?
Silent night, holy night,
Nothing is calm, nothing is bright.
All I want for Christmas is you,
But I know that wish will never come true.
Angels we have heard on high,
Why did Nickolas have to die?
It's the most wonderful time of the year,
Except when your child is no longer here.
The longing to see him is so very deep,
Who is surprised I continue to weep?
Where are you Christmas?
Why can't I find you...my beautiful son.

bigD © 2010

One Last Christmas - Matthew West Official Music Video

2010-12-04T00:01:00.000-05:00

I just found out about this video from Dax Locke's Caring Bridge site. Dax's Mom, Julie, was so excited that Matthew West had written this song for Dax. I think the song is beautiful and the video of little Dax tells a story of amazing grace and courage.

When I first played this song my eyes just filled with tears thinking about Nick's last Christmas. He wasn't feeling well and he was hospitalized the next day due a CNS relapse of his leukemia. We didn't know that December 25th, 2008 would be Nick's last Christmas. My heart is forever broken. I love you my sweet son, please come home soon. Mom

In Love Longing

2010-11-26T02:00:00.006-05:00

In love longing
I listen to the monk's bell.
I will never forget you
even for an interval
Short as those between the bell notes.
~ Izumi Shikibu

Another Thanksgiving without you.
The day is gone and past.
I took a chance and went to the family gathering.
It was hard but I did it.
My sister-in-law Cathy, made up some cards for people to write a memory of Nick or a lesson that Nick had taught them. I really liked that. It was a way to honor Nick and help me to know that everyone loves Nick, remembers Nick, and misses Nick too. There were no names on the papers, but I can sort of figure out who wrote which lessons. It doesn't really matter who wrote what, what matters is that our sweet Nickolas will always be remembered. I will share them below. I am glad I went to Thanksgiving. It was good to be with family. Nick loved family gatherings. He loved having all his friends and family around to share good food, good memories and love. Here are some of the memories and "lessons" people were thankful for from Nickolas:

"Bringing me a bracelet from Ecuador (that I still have)"

"I will always remember Nick ad playing with Brady in the basement during the holidays."

"Patience & not to sweat the small stuff."

"Stay strong in the toughest times."

"To smile and laugh more, to appreciate my health and family."

"Big hair never goes out of style."

"That despite the worst, there is always something good to look forward to."

"Our wedding....Nick was so very handsome all dressed up." "To me Nick was a treasure."

"I am thankful for Nick teaching me how to swim in the pool. I miss my Uncle Nick."

"Nick had a teddy bear. I like it."

"Nick taught me how to eat ice cream."

"To laugh a lot, enjoy the beauty of nature; stop...enjoy where you are."

"Nick fought to live and never complained. He endured pain & suffering to try to get well. He was able to show love and affection to those he loved. He enjoyed simple pleasures and he was kind and thoughtful to all those he met."

I love you my sweet Nickolas. I love you more than a wagon full of puppies. I missed you today and I will continue to miss you every day for the rest of my life. Please come and see us soon. Love and hugs to you my wonderful son. Mom

Holiday Heartbreak

2010-11-24T23:36:00.003-05:00

Tomorrow will be our second Thanksgiving without Nickolas.
How can I begin to explain how horrible that feels? I have been having a rough time for quite a few weeks now. People ask me how I am and when I answer honestly and say, "I am not doing very well" they then ask me, "Why?"
I think to myself....Why? WHY? WHY? How can you ask me that?
Because my beautiful and wonderful son is still dead and I am coming to the horrid realization that this is a permanent situation! I barely remember last Thanksgiving or last Christmas. However, the fog is lifting and I am fully aware that another Thanksgiving is now upon me and my son is never, ever, going to be a part of another holiday. No more memories of Nickolas, no more photos of Nickolas, no more hugs from Nickolas, no more Christmas for Nickolas, and no more life with my sweet son. Holidays are usually a time of joy and happiness. Holidays are a time to gather and celebrate. When your child is gone the sadness is permanent. Celebrating the holiday is the last thing one wants to do. Mourning the loss of your child is a process and finding joy in life again takes a long time and a lot of patience and understanding from family, friends, and loved ones. It is hard to watch everyone smiling, laughing, having fun and carrying on the "normal" family rituals as if nothing has happened. It is hard when your heart is bleeding as if it is a fresh wound no matter how long it has been since your child has left this physical world.

One of the many mothers who lost her young son to cancer wrote the following on her Caring Bridge site today. She lost her sweet son James only ten months ago. This is her first holiday without him. I think her words say it so well.
"Today marks 10 months without James. I can't believe it has been almost a year without him. It seems longer at times, but in other ways, the months fly by. Tomorrow is Thanksgiving, and it will be our first without James. For the last two years, I have posted how thankful I am to have James in my life and in my arms. This year I do not feel very thankful. Yes, I know Michael and I are blessed to have Adeline, but she can never fill the whole in my heart that James left behind. She brings me so much joy, but the pain of not having James is still there. I just want both of my babies in my arms tomorrow, and I can't have that. It's funny how you learn to push the pain aside and live day to day, but you can't hide from it on the holidays. When anniversaries, milestones, or holidays come around, the pain is just as strong and fresh as the day we said goodbye to James. I am just hoping that tomorrow will go by fast, and that Adeline will keep me busy and distracted enough to make it through."

Another grieving Mom, Angie Prince, writes this blog with her husband, Tommy. They lost their beautiful daughter Merry Katherine four years ago in a car accident. They write about their grief journey every day from many different perspectives. Anyone who would like to learn more about those of us who are grieving the loss of a child, I urge you to read their blog as it will help you understand the magnitude of child-loss. With knowledge comes power and perhaps you will be able to find ways to help anyone you know (including me) who has lost a child. On this particular post Angie wrote a poem about the dread that is often felt when it comes to celebrating holidays after we have lost a child. I think Angie's poem says it beautifully.

Two days before "Thanksgiving"

With disgust in my heart--

For man-made festivities,

I don't want any part...

Who says we're to celebrate

On that specific day

When holidays infiltrate

thanks-givings ev'ry day!

How ~ for crying out loud,

Do I party in a crowd:

"Turkey's ready ~ Ham's a fryin' --

Will you ask her to stop cryin'?!"

"Good ~ everybody's here ~

Are you sad again this year?"

"Okay ~ it's time to draw names --

Your child's missing? We can't be blamed!"

"You don't have any time t' grieve today --

We've got to shop and buy all day!"

"Picture time ~ put on that smile...

It's holidays ~ forget that child!"

"Now let's take time to give thanks ~

We'll name our kids ~ Just leave yours blank..."

Uhmm... I can't come...I'm on a diet ~

I'll stay home, have...peace and quiet!

How thankful I am this year...

God comes close to catch each tear...

Here's The Tiny House

2010-11-18T00:27:00.000-05:00

Stage Fright

2010-11-14T23:35:00.003-05:00

Thirty plus years ago, I remember diligently studying the Kubler-Ross, Stages of Dying. People seem to like stages. They suggest a distinct time frame for a particular sequence of events and tend to provide an orderly progression that people can understand easily. Lots of things come in stages, like baby food, diapers, dating, marriage, pregnancy, relationships, and life. Somewhere along the way it was discovered that people who are dying go through stages too; and it would follow that those grieving a death would also go through some similar stages as well. The problem with death, dying, loss and grief is it is not orderly or uniform. It is very individual and "stages" do not allow for us to be human. The problem with stages for grieving is people want you to get through them as quickly as possible so discomfiture is limited for all concerned. Another problem with defined stages for grief is if you do not progress through the stages in the proper order and in a timely manner, people began to think something is seriously wrong and perhaps horror of all horrors; you have become "stuck" in your grief. These stages put a lot of pressure on a person to conform to these "expected" mile markers along the way. Fortunately in recent years, new research data and studies on grief and the people who are grieving have been forthcoming. (And I should say that after thirty years, it's about time!) It is now more widely accepted and understood that everyone does not need to go through any or all of these stages and there is certainly no proper order or time frame for a person to work through their grief.

Grief is a journey. There is no finite end point to grief that will result in the old you returning as if nothing ever happened. There is no magical formula that will "heal" a person who is grieving. There is no road map to "get over it" mountain or the "I'm all better now" resort.

Losing Nickolas has been the single most painful and devastating experience of my life. Why wouldn't I be forever changed by something this traumatic and horrible? Why must I work so hard to help people to understand that? This wound is invisible to others, but I am in a world of hurt every day. Can I die of a broken heart? How broken do I have to be? My grief is all I have right now. My grief is a tangible reminder that my sweet boy is gone FOREVER. Don't try to take it away from me. I won't allow my grief to be pigeon-holed into stages so everyone can breathe a sigh of relief when I am "done." I will never stop grieving for my son. So I guess I am stuck in my grief and I don't give a damn. I have all I can do to stay upright and keep putting one foot in front of the other. Call me angry and I'll deny it!

The Five Stages of Grief by Linda Pastan

The night I lost you
someone pointed me towards
the Five Stages of Grief
Go that way, they said,
it's easy, like learning to climb
stairs after the amputation.
And so I climbed.
Denial was first.
I sat down at breakfast
carefully setting the table
for two. I passed you the toast---
you sat there. I passed
you the paper---you hid
behind it.
Anger seemed so familiar.
I burned the toast, snatched
the paper and read the headlines myself.
But they mentioned your departure,
and so I moved on to
Bargaining. What could I exchange
for you? The silence
after storms? My typing fingers?
Before I could decide, Depression
came puffing up, a poor relation
its suitcase tied together
with string. In the suitcase
were bandages for the eyes
and bottles sleep. I slid
all the way down the stairs
feeling nothing.
And all the time Hope
flashed on and off
in detective neon.
Hope was a signpost pointing
straight in the air.
Hope was my uncle's middle name,
he died of it.
After a year I am still climbing, though my feet slip
on your stone face.
The treeline
has long since disappeared;
green is a color
I have forgotten.
But now I see what I am climbing
towards: Acceptance
written in capital letters,
a special headline:
Acceptance
its name is in lights.
I struggle on,
waving and shouting.
Below, my whole life spreads its surf,
all the landscapes I've ever known
or dreamed of. Below
a fish jumps: the pulse
in your neck.
Acceptance. I finally
reach it.
But something is wrong.
Grief is a circular staircase.
I have lost you.

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

Scrumbled Blue

2010-11-07T01:52:00.004-04:00

Scrumbled blue
A different hue
The color of my
missing you.

Like Andrew's song
Dark blue, dark blue.
My heart's been broken
Straight in two.

Poem bigD © 2010

If I Needed You

2010-10-30T23:07:00.009-04:00

Memories of Halloween's past do not begin to make-up for the future that has been lost.
I don't have any good pictures in my computer of Nick dressed up for Halloween.
I look at this picture and it just makes me want to cry.
This was an early Halloween. I guess Nick was around three?
I cannot remember. Everything is fuzzy. If I didn't have this picture and others like it would I be able to remember at all?
I remember how diligently I was trying to get this clown face on Nick. He was very patient and happy. Nick was a wonderful little boy. I don't think I truly appreciated his easy-going and loving nature. Most kids would have no parts of a process like this, but Nickolas was ready to go. Be a clown for Halloween? Sure...no problem.

I love his curly hair. It was so soft and beautiful. Why did we ever get it cut? I love his happy, smiling face. His joy in the moment, my sweet little boy, completely trusting that I was gonna get this done.

Why did this have to happen? Why is my sweet son dead and gone? Why did he get leukemia? Why did he have to die? Why did he have to have such a horrible experience? Why won't I ever get to see him again in this earthly world? Why won't these nightmares leave my brain? Why do I have to go on living without him? Why didn't we get to cheat death? Why do children have to die before their parents? I am haunted by these questions. I wish I knew the answers. I have none.

If I needed you would you come to me,
Would you come to me, and ease my pain?
If you needed me
I would come to you
I'd swim the seas for to ease your pain

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

'Welcome Home'

2010-10-28T02:00:00.000-04:00

This video was posted on Nick's facebook page by Kate D. I love this song and the video. I asked Kate if there was a story behind it and she just said that they had discovered the video/song and they both liked it. When I watch the video there are times when you see different views of the singer and they remind me of Nick so much, I just want to cry. Even the clothes the guy is wearing remind me of some of Nick's shirts. The song has such a wistful and ethereal sound.

Lyrics to "Welcome Home" by Radical Face

Sleep don't visit, so I choke on sun
And the days blur into one
And the backs of my eyes hum with things I've never done

Sheets are swaying from an old clothesline
Like a row of captured ghosts over old dead grass
Was never much but we made the most
Welcome home

Ships are launching from my chest
Some have names but most do not
If you find one, please let me know what piece I've lost

Peel the scars from off my back
I don't need them anymore
You can throw them out or keep them in your mason jars
I've come home

All my nightmares escaped my head
Bar the door, please don't let them in
You were never supposed to leave
Now my head's splitting at the seams
And I don't know if I can.

The Tiny House

2010-10-10T00:49:00.003-04:00

He would live in a tiny house.
His folks would live nearby.
He would have a wife
And some babies of his own.

He wouldn't need much.
Simple gifts of life, love, and family.
Good books.
Bluegrass music.
Food on the table.
Friends to share the bounty.

He would sleep beneath a cloudless, starry sky.
Rising at dawn to rays of sunshine
Streaming through the windows.
The bluebird of happiness
Would nest in the rafters.
And its beautiful song would
Be carried on the breeze for
All to hear.

He would live in a tiny house.

Autumn's Melancholy

2010-10-03T02:12:00.004-04:00

Leaves fall like tears.
Color bleeds from my heart.
My world is black and gray.
Without you my son,
seasons have no meaning.

~bigD © 2010

Chanson d' Automne
~Paul Verlaine

The long sobs
Of the violins
Of autumn
Wound my heart
With a languor
Monotonous.

All suffocating
And pale when
The hour strikes
I remember
The old days
And weep

And I go away
In the ill wind
that carries me off
This side and beyond
Like the
Dead leaf.

Watch & VOTE!! Please!!!

2010-09-22T20:50:00.000-04:00

Lament: A Cry of Sorrow and Grief

2010-09-20T01:02:00.005-04:00

There is no more drama. No more life hanging in the balance. Nothing to report. Life goes on. I still hate every morning that I awaken to find that this nightmare I am living is real. That my beautiful son is still dead. I look over at the wall. There are two photo frames, they each hold graduation pictures, graduation announcements, and name cards that explain the meaning of the names "Nickolas" and "Sara." Every morning I have to look at those two frames and know that my daughter's life continues to move forward, while my son's is over. Living with memories is a great idea, but, it is basically a bunch of bullsh*t. YOU live with the memories! I want my son back. I know people must be tired of hearing all this by now. I really don't care. Please just stop reading and go away if that is the way you feel. I don't want to be told what I should do. Unless you have lost your child your opinion on my lamentation is not welcome here. I am doing the best I can. Maybe that is not good enough for some people who make judgements where they ought not. The struggle to continue on through each day of this life is hard enough. I will figure something out on my own timetable. Please don't accuse me of thinking I am alone in this misery, I know I am not; but, you, YOU, are not in here with me unless you have lost your child. The dues for this club are quite expensive and you do not want to join this club. Excuse me if I don't feel very positive right now. Positive is getting out of bed every day and facing a world that is empty without my son. Positive is living with the cowardice of living. Positive is trying to find comfort in butterflies and rainbows, and spinning tales of honor and memory and trying to pretend that this is somehow an OK replacement for my living and breathing son. Positive is biting my tongue when some insensitive person tries to tell me what I should be doing to move on, get over it, move past it, and generally act like it is all OK that Nickolas is gone forever. When your child dies it feels like you have just been sentenced to life in prison. Can anyone understand that? How long will it be before I can see my boy again? Will I ever see him again? What can I do to take away this pain? I have no answers, only tears and the endless days of longing to have my son back here where he belongs.

Edward Hirsch wrote the following in an article about grief entitled "To Go Its Way in Tears: Poems of Grief. "We live in a superficial, media-driven culture that often seems uncomfortable with true depths of feeling. Indeed, it seems as if our culture has become increasingly intolerant of that acute sorrow, that intense mental anguish and deep remorse which may be defined as grief. We want to medicate such sorrow away. We want to divide it into recognizable stages so that grief can be labeled, tamed, and put behind us. But poets have always celebrated grief as one of the deepest human emotions. To grieve is to lament, to mourn, to let sorrow inhabit one's very being." Below a poem written by Kathleen Sheeder Bonanno.

Death Barged In

In his Russian greatcoat
slamming open the door
with an unpardonable bang,
and he has been here ever since.

He changes everything,
rearranges the furniture,
his hand hovers
by the phone;
he will answer now, he says;
he will be the answer.

Tonight he sits down to dinner
at the head of the table
as we eat, mute;
later, he climbs into bed
between us.

Even as I sit here,
he stands behind me
clamping two
colossal hands on my shoulders
and bends down
and whispers to my neck,
From now on,
you write about me.

Shave For The Brave

2010-09-16T01:17:00.000-04:00

No More Birthdays Dearest Son

2010-09-11T00:01:00.002-04:00

Nickolas should be here to celebrate his 28th birthday with his family, his friends, with his Mama, with his Papa, and his beautiful sister, Sara. Instead, Nick is not here. Nick is gone forever. I am at a loss to find a fitting way to celebrate this second birthday without my son, without our sweet Nickolas. No more cake, no more presents, no more birthday cards. I was in the card store the other day and I couldn't even look at the birthday cards for sons. My son will never have another birthday here in this earthly world. How will this hole in my heart, my life ever be filled? I have no answers. The longing to see my son, to have him come back home never ends. The pain is always with me. Below are the words I wrote to Nick on his 26th birthday in September of 2008. It seems so long ago...Nick was in the hospital recovering from his bone marrow transplant. We were so hopeful for a new beginning, little did we know the pain and suffering that was to come.

To my dearest Nickolas,

Where have the years gone?
It seems like only yesterday I first held you in my arms,
a bright-eyed, curious creature, my first-born, my son.

I will always look at you through a mother's eyes.
You will always be my baby.
I will always try to protect you from harm.
I will always feel horrible when I don't succeed.

I wish I could take this burden from you.
And still, I will be there for you always and forever.
No matter what may come our way.
You can lean on me for I am strong. I am your Mom.
Together, there is no obstacle we cannot move.

I will always love your beautiful face, your hazel eyes,
your big smile and your open heart.
You are a gentle and kind soul.
Your passion for life and adventure will carry you far.
Your compassion for others will guide your journey.
Your spirit is strong and will sustain you through this time.
I am so proud of you.

On this September 11th day, as you fight for a new beginning,
I think back to the miracle of life that was your birth.
Oh, to finally have you in my arms!
Your birthday was a day of joy and promised a future full of hope.

You have grown up into a wonderful man.
You have always been a loving son.
Know that I will love you always and forever.
Happy 26th Birthday, my beautiful son.

I miss you today just as I have missed you every moment of every day since you left this world. Please come home my sweet boy. I love you more than a wagon full of puppies. Mom

Land Of Tears

2010-09-05T02:10:00.002-04:00

#1 -If you have not done so already, I am asking everyone to PLEASE make a donation to Max's Ring of Fire to show support for Max's Fun Run, which will be held on September 11th. I posted a version of the song "Ring of Fire" on my play list so you can sing along and think of Max and his family. If you need another inspirational and courageous story of Max and his family, please read the most recent post on Max's blog, written by Max's Dad, entitled, "The Night Max Went To Heaven."

#2 - Please go to this link and VOTE for "Arms Wide Open Childhood Cancer Foundation" so they can win $250K from the Pepsi Refresh Project. When you click on the link the Arms Wide Open bar will appear. Click on "Vote for this idea." This will prompt you to fill out the needed sign-in information and then you can officially vote.

This money will be used to fund research for childhood cancer including neuroblastoma. You can vote once/day/email address. You must sign-in with each different email address. You may also vote once/day by texting 102653 TO PEPSI (73774). Voting will continue through the end of September.

#3 - I don't know how many more ways I can talk about how sad I am and how much I miss my sweet boy. Ever since the one year date has passed things have just been going from bad to worse. I am often frustrated, angry, sad, tired, unmotivated, easily agitated, indecisive, withdrawn, and anti-social. I have much I want to say but I am just too emotionally drained to find the energy to create something that truly says what I am feeling each and every day of this life without Nick. I cannot begin to explain how this feels in any real way. I am so scattered and unable to stay focused.

Nick's birthday will be here very soon. I cannot believe it will be one year since we all gathered at his memorial. I had a dream about Nick. It was very brief. I woke up and a while later as I lay in my bed, I suddenly realized I had had a dream and Nick was in the dream. I remember thinking to myself that he looked good, but, he was still so thin. But, the Nick in my dream wasn't when Nick had been sick. It seemed that it was more like when he was in high school. He came up to to me while I was talking to someone and he tapped me on the shoulder, as if to say, "Mom, I'm here." As I was dreaming I didn't process that I was "seeing Nick" and that I better get a good look at him and hug him. It wasn't like I was "OMG, it's Nick"....and I was all happy that I was able to see him and touch him in my dream. For some reason in the few dreams I have had of Nick, the idea that Nick is gone and now I am seeing him in a dream never computes. After I woke up and it was too late I realized all this and then I just cried.

It is such a secret place, the land of tears. ~Antoine de Saint-Exupery, The Little Prince

Max Mikulak and The Power of Love

2010-08-24T23:20:00.003-04:00

Max is a wonderful little boy who fought the fight against neuroblastoma for much of his young life. Max was born on June 30, 2001. Max died on August 31, 2008. On his blog, "Max Mikulak - Neuroblastoma Angel," it says he will be "forever seven." I don't know how I came to know of Max, but, I am glad I did. If you read about his life and his wonderful family you will understand what an amazing person Max was and how much he was and still is loved by his Mom, his Dad, his sister and his brother, his family and his friends.

Max's family continues to fight for a cure for neuroblastoma, a form of pediatric cancer, which is so underfunded that parents of the children with this diagnosis often join together to raise money to fund research and new clinical trials so their own children can receive treatment. This year on Nick's birthday, September 11th, the Mikulak family is sponsoring their first annual Max's Fun Run, to help save kids with cancer! The money raised goes to fund neuroblastoma research and 100% of the proceeds will go directly to the doctors who are doing this much needed work.

The Mikulak's have created a non-profit organization dedicated to this cause, it is called, Max's Ring of Fire. The story of Max and the Ring of Fire song can be found HERE on Max's blog page, this is where I first saw a video of Max singing the song. I love when Max sings the Ring of Fire song. You gotta love a kid who likes Social Distortion and skateboarding. When I hear that song it makes me smile. I don't know why but little Max just reminds me of Nickolas.

Anyway, this year instead of doing the Light the Night walk, I am asking anyone and everyone who may still be reading my blog to support Max's Fun Run by DONATING whatever you can to this important cause. I know Nick would approve and I hope Nick and Max have found each other in the great beyond and are hanging out. Max was a big Star Wars fan, he loved ships and WWII planes. He was a very smart little guy and I think Max and Nick would get along famously. I know they have a lot of war stories they can share as well.

Please watch the video below to see some great photos of Max (with his sister Hannah and his brother Nicky) and hear Max belting out the Ring of Fire song. There are many other pictures and videos of Max on his sites.

To donate, please click on the CHIP IN widget on the side of my blog and you can donate directly to Max's Fun Run. Remember ANY donation is much appreciated. Max's Fun Run will happen on September 11th, so don't delay! What a great way to celebrate the lives of two wonderful and courageous young people, Max and Nickolas!

Light Up The Sky

2010-08-19T00:50:00.006-04:00

It is hard for me to understand how an entire year has passed since Nick has left this world. My heart is forever broken and I somehow know I will live with the pain of this loss forever. I miss Nickolas more than words can say. This picture is a good one of Nick and Katie K. I love Nick's hair and his wonderful smile. I love seeing how tall he is and how healthy he looks in this picture. It makes me sad for all the things that will never be. I mourn for the future we all lost, the new memories of times with Nick we will never have. It is hard living with only past memories. It is hard to think my memory will fail me and I won't remember his face, his smile, his voice, like I want to, always and forever.

For the one year anniversary of Nick's death, August 13th, Glenn & I went to the beach and we took Nick with us. Sara decided she did not want to be on the beach for that day so she spent the day with a friend at home. Sara chose of a fitting celebration of a "Day of Eating." I know Nick would love this because he loved to get his eat on and that was something that was taken away from him for so long when he was sick. Glenn & I drove down to Ocean City on Thursday night and then on Friday, we had a one day remembrance that was quiet and serene.

I was not sure what I wanted to do for Nick on this day. I only knew I wanted to do something. My sister Barbara figured out how to make a Loi Krathong. It is a custom in Thailand and you make a raft like platform that holds flowers, candles and incense and then you send it off on the water. Without getting into all the detail, we launched the Loi Krathong at dusk on the bay side while the sun was setting. We were not sure if it would float, but, it did and Glenn & I, Barbara and Nick's grandfather, all stood and watched as it floated out into the bay. We watched it for as long as we could. It was very peaceful and beautiful.

Earlier in the day I had set my phone to alarm at the exact time of Nick's passing. We had been busy that day doing lots of things that Nick loved to do and I wanted to be on the beach at that exact time. We had gone to eat breakfast at Jimmy's, then we went to visit with Nick's grandma, then we hung out at grandpa's and made the Krathong. Then we all packed up and went to the beach around 5:15PM or so. We took some chairs and a blanket. Nick's grandpa took a cigar to smoke in Nick's honor. (Nick's good friend Barrett mentioned that he would have a "black & mild" burning in Nick's memory that day.) We actually took Nick with us everywhere that day and so he was off to the beach with us. It had been cloudy and overcast most of the day, but, it wasn't raining, so we were happy to be able to get on the beach.

We had just arrived on the beach and set-up our spot when my phone alarm went off. It was 5:40PM, the time of Nick's death. Almost at that exact moment, Glenn called out, "Look there's a rainbow!" We all looked up to see a beautiful rainbow peeking through the clouds. I was amazed. We all got teary and cried. It seemed like Nick was letting us know that he was happy to finally be on the beach with us and that he was enjoying our little celebration. The rainbow persisted for quite a while and even came and went a few times. I am not one to really believe in "signs" but I felt the timing of this one was just too much to be a coincidence. These things don't happen often, so I can only cling to the hope that somehow Nick is still with us and he will let us know whenever he is able.

On Sunday, August 15th, Glenn & I took Nick to the mountains. We traveled quite a fur piece, all the way to Boone, NC to see Grandfather Mountain. It was a nine hour car ride and it was hot, humid and rainy almost the entire time. We came home a day early because I couldn't be away from home any longer. I still get very antsy when I am away from home, I don't know why. I feel better now that I am here. I had quite a few meltdowns during the trip. It is quite overwhelming to accept that "life goes on" and it has been a year and somehow I am still alive and breathing. There are lots of days when I don't want to be here anymore. I am only in the infancy of this grief. That is hard to face also. I wonder how long I will feel this horrible pain? How many more days, weeks, months, years? When will I understand why this had to happen to our beautiful, sweet boy? How is it possible to miss someone so much and why does it hurt so badly?

I love you always and forever my sweet son. I love you more than a wagon full of puppies. Please come home. Mom

P.S. - We also bought some Wish Lanterns that we wanted to send up into the sky, but, it was too windy. We hope to be able to send them up on Nick's birthday. They look so beautiful and I want Nick to see them and know that we are missing him and loving him so much. They are 99.9% biodegradable and the next time we order them they have new ones that are 100%. The same was true of the Krathong, we didn't want Nick to get upset that we were messing with the eco-universe. Not sure what I want to do for Nick's birthday, still thinking on that.

P.S.S. - Next post, I will try to put up some pictures that we took. Also, I will be putting up some info on Max's Fun Run that will be happening on Nick's birthday out in San Diego. I will be posting Max's story and I am hoping to get everyone to donate to Max's Ring of Fire instead of doing the donations for Light The Night Walk this year. More explanation soon.

Dare to reach out your hand into the darkness, to pull another hand into the light. ~Norman B. Rice

His high endeavors are an inward light
That makes the path before him always bright.
~William Wordsworth

Round Here

2010-08-12T01:01:00.005-04:00

round here he's always on my mind
round here (hey man) i got lots of time
round here we're never sent to bed early and nobody makes us wait
round here we stay up very, very, very, very late.

i can't see nothing, nothing round here (oh)
won't you catch me if i'm falling?
won't you catch me if i'm falling?
won't you catch me cuz i'm falling down on you.

see i'm under the gun round here
oh man i said i'm under the gun round here
and i can't see nothing, nothing round here.

Why Are Your Poems So Dark?
Isn't the moon dark too,
most of the time?

And doesn't the white page
seem unfinished

without the dark stain
of alphabets?

When God demanded light,
he didn't banish darkness.

Instead he invented
ebony and crows

and that small mole
on your left cheekbone.

Or did you mean to ask
"Why are you sad so often?"

Ask the moon.
Ask what it has witnessed.

Painting by Crawfurd Adamson. Website: http://crawfurdadamson.com
Lyrics "Round Here" written by Adam Duritz and Dan Jewett (Counting Crows)
Poem written by Linda Patsan

Not Fully Myself

2010-08-05T23:46:00.004-04:00

No creature is fully itself till it is, like the dandelion, opened in the bloom of pure relationship to the sun, the entire living cosmos. ~D.H. Lawrence

Ask My Mom How She Is
~Author Unknown

My Mom, she tells a lot of lies,
She never did before
But from now until she dies,
She'll tell a whole lot more.
Ask my Mom how she is
And because she can't explain,
She will tell a little lie
because she can't describe the pain.

Ask my Mom how she is,
She'll say "Oh, I'm alright."
If that's the truth, then tell me,
why does she cry each night?
Ask my mom how she is
She seems to cope so well,
She didn't have a choice you see,
Nor the strength to yell.

Ask my Mom how she is,
"I'm fine, I'm well, I'm coping."
For God's sake Mom, just tell the truth,
Just say your heart is broken.
She'll love me all her life
I loved her all of mine.
But if you ask her how she is,
She'll lie and say she's fine.

I am here in heaven
I cannot hug from here
If she lies to you don't listen
Hug her close and hold her near.

On the day we meet again,
We'll smile and I'll be bold,
I'll say,
"You're lucky to get in here, Mom,
With all the lies you told!"

“We must embrace pain and burn it as fuel for our journey.” Kenji Miyazawa

The Sun, The Moon, and the Truth

2010-08-01T00:41:00.006-04:00

Moonlight slanting

by Matsuo Basho

Moonlight slanting

through the bamboo grove;

a cuckoo crying.

It is difficult to describe the day-to-day journey of living without Nickolas. I do not sleep well. My thoughts are fragmented and I feel lost in a world not of my own choosing. I don't know how to escape this place where I must now dwell for the rest of my life. The summer days roll on, each a reminder of the all that Nick suffered at the hands of a cruel fate that he did not deserve. I am swept along in the turbulent waters of a powerful emotional tsunami. I have no control over this liquid pain. The memories wash over me. There is dangerous debris floating along in these murky depths; they strike out and cause injury when I least expect it. Suddenly I find my arms and legs entangled and I am helpless to fight another day. I feel the undertow and my weary body no longer wants to fight. I relive the final days of Nick's life once again. The day of Nick's death looms near. I am so angry that it will soon be an entire year that I have lived without him. How is that possible? I don't want to live without Nick.

I don't know what to do. I am so tired. Sometimes I just want to stop being. I just want to stop. Is there a switch somewhere that I can flip to shut this down for a while? Forever? I wish I could explain how horrible it feels to be reminded over and over again that Nickolas is forever gone from our lives.

I love you Nick. I miss you so much. This poem reminds me of you hiking the Appalachian Trail. When you are done with your hike, please come home. Mom

The Road was lit with Moon and star ~Emily Dickinson

The Road was lit with moon and star --

The Trees were bright and still --

Descried I - by the distant light

A traveler on a hill --

To magic Perpendiculars

Ascending, though Terrene --

Unknown his shimmering ultimate --

But he indorsed the sheen --

“Three things cannot be long hidden: the sun, the moon, and the truth.” Buddha

Lost Spirit

2010-07-26T11:27:00.004-04:00

Missing you.
Memories haunt.
Broken hearted
Spirit lost.
Bone tired
Tears flow.
Painfully watching
Time pass
Without you.

Every night when I go to bed, I hope that I may never wake again, and every morning renews my grief. ~Franz Schubert

My Heart's Best Treasure

2010-07-18T00:15:00.003-04:00

Surprised by joy - impatient as the wind

Surprised by joy – impatient as the wind
I turned to share the transport – Oh! With whom
But thee, long buried in the silent tomb,
That spot which no vicissitude can find?
Love, faithful love, recalled thee to my mind –
But how could I forget thee? - Through what power,
Even for the least division of an hour,
Have I been so beguiled as to be blind
To my most grievous loss? – That thought's return
Was the worse pang that sorrow ever bore,
Save one, one only, when I stood forlorn,
Knowing my heart's best treasure was no more;
That neither present time nor years unborn
Could to my sight that heavenly face restore.

This sonnet was written by William Wordsworth after the death of his three-year old daughter, Catherine. Edurne Scott wrote the following analysis of Wordsworth's poem, "the poem highlights how the mind remembers the dead, how thoughts keep those that have died alive, and how these thoughts inevitably make one have to confront death time and time again. In this way "Surprised by Joy" expresses the double pain and loss of death- not only the death itself but the fact that one can remember a loved one, and the fact that one can only wish that they were there with them in particular moments- in Wordsworth's case in moments of happiness when he is 'surprised by joy' and which has given the poem its title."

“Normal day, let me be aware of the treasure you are. Let me learn from you, love you, bless you before you depart. Let me not pass you by in quest of some rare and perfect tomorrow. Let me hold you while I may, for it may not always be so.” Mary Jean Iron

Still Hurting

2010-07-14T00:19:00.005-04:00

It has been eleven months since Nick died. I really cannot even believe it still. Last year on July 13th, 2009, Nickolas has been in the hospital for 39 DAYS! Can anyone believe that? I cannot believe it and I freakin' lived it!!!! As I go through this summer, I think about how last summer basically did not even exist! Whole chunks of my life seem to be missing and I have to constantly do a review in my head..."Oh yeah, last summer I wasn't at the studio. I was at the hospital every day." The summer didn't exist for Nick. His life was the four wall of that f*ckin' hospital room, day in and day out. Now it's one thing if you think there is a purpose to being there, if you think you are going to get better and go home and have a life again. When I look at pictures or read my daily notes of what was going on, I am really wondering how the hell Nickolas was able to endure all the painful procedures, the constant emotional upheaval, the physical deterioration of his body, the loss of his life as he knew it...everything just gone in what seemed like a blink of an eye.

The pain of watching Nick suffer like this was and is still terrible. The only way I can deal with it is to block all thoughts of that time from my mind. I was powerless to protect him or take away his pain. I did what I could, but, it wasn't enough. Even the chance to hold and comfort your child is taken away due to all the tubes and machines and constant interruptions. And when you have an "adult" child it is even worse because they are "grown-up" and they are not supposed to need hugs. They are not supposed to need their Moms. That is one thing I am so glad that I refused to let them take from me...Nick wanted his family close to him. He was always asking for someone to "snuggle" with him. At the end, when he was on the breathing machine, it was so much harder to hold him and give him hugs. All I wanted to do was hold him and make him feel safe and be able to tell him everything was going to be alright. I wanted to be able to bring him home and not let him die in the hospital. Nick hated the hospital and this is one of my deepest regrets about his final days.

On July 13th last year, Nick was subjected to yet ANOTHER bronchoscopy (that showed nothing) and he had the trach tube placed in his neck and the feeding tube placed in his belly. How horrible that on this same date, one month later, Nick would be dead! My poor sweet, beautiful son, gone forever. I cannot imagine how scared you must have been and yet you were so brave. I am so sorry Nick for everything that I couldn't fix. God bless you my sweet boy. My heart was aching all day yesterday. I miss you more than all the stars in the sky. I love you more than a wagon full of puppies. Please come home. Mom

I couldn't bring myself to put a picture of Nick with his trach. It is a very sad, sad picture and it only makes me cry. So I chose a different picture instead.

“Those with the greatest awareness have the greatest nightmares. ~ Mahatma Gandhi

Waiting For Nickolas

2010-07-12T01:38:00.003-04:00

This picture made me think of Ernie. It looks like he is waiting for Nickolas to show up on the "other side."

I love you my sweet boy. We all miss you so much every day. My heart is forever broken and I long to see your smiling face. I long to hold your hand and hug you. I would never let you go.

Let your tears come. Let them water your soul. ~Eileen Mayhew

Bleeding Heart

2010-07-04T20:03:00.003-04:00

Two days before the fourth of July you finally came off the breathing tube.
That first day was a joy because you were free of the tube down your throat and the breathing machine was gone.
You wanted to eat so badly.
You got your Marburg menu and had all your meals ordered and ready to go.
But, they would not let you eat until you had a test that proved you could swallow.
Even the small joy of eating was taken from you.
Why didn't I just let you eat?
Why didn't I tell them all to go to hell with their stupid rules?
What do they mean now?
Just heartache that I was part of denying you that precious nourishment that you needed so badly.
The next day you did not feel as strong. We waited so long for them to do the test.
By the time they did it, it was so late. You were so exhausted from breathing.
It was easy to forget that ugly beast while you were on the breathing tube.
I don't remember much about the day of July 4th last year.
I just know you were looking forward to watching the fireworks.
I wasn't sure it would happen, but, thanks to some wonderful nurses and respiratory therapists,
it did.
They rolled you in your bed with all the tubes, poles and oxygen over to another room where we could all watch the fireworks together.
You were so quiet.
I was so scared.
I remember sitting beside you and holding your hand.
I remember you did not say much.
Now I wonder, what were you thinking that night?
What were you feeling?
Were you scared too? Were you hungry? Did your belly hurt?
Did you know this would be the last time you would ever see fireworks?
Did you know this would be our last July 4th together?
I don't know what was going through your head or your heart.
July 4th will never be the same; it will always remind me of that time we spent on the fifth floor of the Weinberg building.
As we sat together watching the fireworks exploding and showering the night sky, somehow, the colors were not as brilliant and the joy was bittersweet.
I am so sorry my sweet boy. I miss you with all the pieces of my broken heart.

Weary Spirit

2010-06-29T01:57:00.003-04:00

Your death has cut me down like a tree in the forest.
I was once majestic and strong.
You were my roots.
You kept me anchored.
You kept me steadfast and upright reaching for the sun, the moon, and the stars.
Now we have been traumatically separated.
You have been amputated from my life.
I have fallen to the ground, helpless and afraid.
I am at the mercy of this loss.
It drags me where it will.
I am powerless to prevent being cut deeper and deeper.
Soon I am nothing but dust.
I will never be that tree again.
Perhaps a small acorn of my life fell beside the place where that tree used to stand.
Perhaps with your love in my heart a new tree will grow.

I miss you my beautiful son. The pain of this time is quite unbearable. God how I wish I could have done something to save you from this. Please come home to your Mama.

It is not so much for its beauty that the forest makes a claim upon men's hearts, as for that subtle something, that quality of air that emanates from old trees, that so wonderfully changes and renews a weary spirit. ~Robert Louis Stevenson

Father's Day

2010-06-20T23:02:00.007-04:00

How do you "celebrate" Father's Day when you have lost one of your children? The answer is we don't! Last year at this time Nick had been in the hospital since June 5th. Nick had the lung biopsy done on June 19th and so he spent Father's Day on a breathing machine with tubes coming out of his body in every direction. He was in a lot of pain and for the first forty-eight hours it was all they could do to get him sedated and out of pain. Glenn and I hovered around his bed for hours trying to calm him, soothe him, and get him comfortable in any way we could. Today I realized that Father's Day passed for all of us without notice. Nick didn't even know it was Father's Day. The lung biopsy was the start of several extremely rocky weeks. Poor Nick suffered so much and Glenn, Sara, Kate & I right along with him.

Today Glenn and I cried once again about the loss of our beautiful, sweet boy. The pain cuts deeply and without surcease. A few weeks ago I found some old Father's Day cards that Nickolas had given to his Dad. They just break my heart. If only I could bring back my little man with his Donald Duck flip flops. If only I didn't have to see his Birkenstock sandals sitting by his bed every day, reminding me he will never walk on this Earth ever again.

"My son, a perfect little boy of five years and three months, had ended his earthly life. You can never sympathize with me; you can never know how much of me such a young child can take away. A few weeks ago I accounted myself a very rich man, and now the poorest of all."
~Ralph Waldo Emerson, on the death of his son

Forever Young

2010-06-16T02:16:00.000-04:00

Little Flower

2010-06-12T01:40:00.004-04:00

The days go on. Nick should have been at Bonnaroo with his sister and his friends, listening to music and enjoying being young and healthy. Nick missed two years of Bonnaroo due to his leukemia. When Nick was diagnosed, he had to cancel a trip that had already been planned for June of that year. We both fully believed that he would be well enough to go the following year. Instead Nick was in the hospital again. I can barely read the notes from those days without completely breaking down. I am falling apart little by little, emotionally and physically. Anyway, sometimes somebody else can say it better. Click here. I miss you my sweet boy. I love you more than a wagon full of puppies. The pain of missing you is ever in my heart. If only this could be undone, my heart would burst with joy. Please come home to see us. Mom

"A good traveler has no fixed plan, and is not intent on arriving." ~Lao Tzu

Please VOTE!

2010-06-09T23:39:00.002-04:00

This picture looks like my crazy cat "Spock." We adopted Spock in December. Spock has been good medicine for Sara & I. Not so much for Glenn. Spock has really come out of his shell and he is a bittersweet reminder of how Nick wanted to get a cat when he got better.

Not going to go into much of anything today. Mainly I wanted to ask everyone to check out this link and go vote for Jimmie Johnson's Pepsi Refresh Project. There are three drivers each with their own project idea. The driver who gets the most votes will receive $100K to go to their project. Jimmie's Pepsi Refresh idea is to provide financial relief for kids undergoing bone marrow transplants through the Be The Match Foundation. This project can help so many kids and families facing many different kinds of cancers where transplant is an option for a cure. You can vote as many times in a day as you wish. So please pass the info along to friends and family.
Dr. Spock wants you to VOTE today and as often as you can until 6PM on June 23rd.

Get Out of Jail Free

2010-06-05T22:47:00.005-04:00

Today is almost over. Sometimes I am so glad when a day is over and I can move on to the next one.

Today brought back a flood of memories. This date will forever now be tied together with good and bad memories.

Today is Sara's 24th birthday. Was it really twenty-four years ago that I held my newborn daughter in my arms, while her big brudder looked at his new baby sister with a big grin on his face.

Today, one year ago, Sara was celebrating another birthday. We were all supposed to go to the party. Instead Nick had to go back to the hospital. Nick didn't want to go. I truly thought it would just be a couple days and we would get Nick back home. Nick wanted to go to his sister's birthday party so badly. I don't know if he would have been able to tolerate it though. His breathing had just gotten worse and worse. He wasn't even sure if he would be OK riding in the car all the way to the hospital.

I have been having a lot of recalls of all the bad memories of Nick's final hospital stay. I have been feeling terrible. I am not a "politically correct" griever. I have nothing good or kind or sweet to say. I am so angry. I have no patience for drivers who are idiotic, bad singers, rude store clerks, or anything that rubs me the wrong way (which is just about everything these days!) I curse at the television. I don't want to leave my house ever. I hate going out, I am worn out before I even step out the door. I am physically falling apart and I am emotionally drained. I took care of Nick for fifteen months and then I jumped back into some version of what is now my life. I HATE life right now. I feel like a two year old having a temper tantrum 24/7.

I am tired of trying to figure out how to get people to understand this horrible experience. How could they? What do I want a medal or something? I don't know what I want. I am so confused. I know people "care" but people have their own lives and they just don't have time to worry about me and my problems. I get it. I know people have their own problems. My experience is mine alone. Nobody else can KNOW what I went through with Nick on a daily basis for fifteen months. For the most part, lives went on while ours was in the shitter. I get that. It happens all the time. It's happening right now. People are locked up in the cancer hospitals all over the world getting "life-saving" chemicals pumped into their bodies. Some people care; some people don't. Why should my situation be any different.

I am so tired. Tired of thinking, tired of reading books, tired of feeling exhausted all the time, tired of making decisions, tired of paying bills, tired of household chores and duties, tired of everything. I guess I am just tired of living life right now, because this is what life is for most of us. I can't see the happy, pretty, rainbows. I am not a happy, pretty, rainbow kind of person. I had enough issues before all this, now I have taken a nose dive into an even darker abyss. I see no solution. Nick is gone forever. My son is DEAD!!! When I get angry or frustrated over something, I just throw it right out there. It's like the "race card" or a "GET OUT OF JAIL FREE" card, only I call it the "dead son card."

Nobody likes when I use the "dead son card." Many have asked me where I get my sense of entitlement. This comes from the angry me that wants to know why my son got picked out of the whole universe to get leukemia? Why Nick had to get the freaking lung complications? Why Nick had to have the most arrogant batch of know-it-all doctors and some nurses who always knew better than we did what Nick was going through? Yes, I feel I am entitled to ALL THE EMOTIONS THAT COME WITH THIS GRIEF ROLLER COASTER! I am sure the anger will eat me alive before I ever find my way off this god damn ride. In the meanwhile, I will play the "dead son" card as often as I want, at any time and for any reason, BECAUSE I FREAKIN' FEEL LIKE I AM GOING TO GET SOMETHING OUT OF THIS FREAKIN' RAW DEAL THAT I HAVE BEEN DEALT!! Notice how it is all about me! Yes, yes, selfish and pathetic me. I don't know what I think this accomplishes. I know it is nothing. I know Nick is the one who died, but, now I (and the collective we, trying to keep it full on about me here!) have to deal with the consequences. I have to figure out WTF to do with my life now. I can't figure out how to pretend this all didn't happen and move on. How does one effing do that???? I really wanna know.

Now you see how that whole little tirade is just not very PC? You can believe I am not spouting stuff like this amongst the unsuspecting public who assume I am "doing OK." If only they wanted to know how I am really doing. Why am I so ungrateful for the blessings in my life? I know I still have so many good things in my life. I have a life, but, right now I am missing my sweet and beautiful son so much every day. I am hurting every day! My wounds are invisible and they are serious. Just because you cannot see them does not mean they are not there. If I was in shock trauma, I would be listed as "critical, but stable." I am not out of the woods yet.

A Fragile Creature

The loud thud on the window pane
Startled them all into action.
They gathered around and
Stared down at the bird on the pavement.
With eyes wide open, its feathered breast calm and still,
It appeared to be only stunned by the impact.
Surely in a moment it would rise and take flight.
A gentle hand scooped the bird up
With hope to render aide.
It was then they found its broken neck.

How Sleep The Brave

2010-05-31T00:32:00.002-04:00

Freedom Is Not Free

I watched the flag pass by one day.
It fluttered in the breeze.
A young Marine saluted it,
and then he stood at ease.
I looked at him in uniform
So young, so tall, so proud,
He'd stand out in any crowd.
I thought how many men like him
Had fallen through the years.
How many died on foreign soil?
How many mothers' tears?
How many pilots' planes shot down?
How many died at sea?
How many foxholes were soldiers' graves?
No, freedom isn't free.

I heard the sound of TAPS one night,
When everything was still
I listened to the bugler play
And felt a sudden chill.
I wondered just how many times
That TAPS had meant "Amen,"
When a flag had draped a coffin
Of a brother or a friend.
I thought of all the children,
Of the mothers and the wives,
Of fathers, sons and husbands
With interrupted lives.
I thought about a graveyard
At the bottom of the sea
Of unmarked graves in Arlington.
No, freedom isn't free.
~Kelly Strong

Hans Zimmer's "Stand Up To Cancer"

2010-05-28T12:16:00.001-04:00

Two years ago on May 28th, 2008 Nickolas was diagnosed with leukemia. I was with Nick when he got the call from the first in a long line of insensitive doctors who told him on the phone, "We think you might have leukemia. You need to come to the hospital now." That began a journey through the world of blood cancer that is indelibly etched on my heart and soul. In September of 20008, Nick was in the hospital for only the second time. Nick had received what we had hoped was a "life-saving" cure, his BMT. On September 5th, 2008, Nick was transplant Day #9 and he had been in the hospital sixteen days. On that evening, STAND UP TO CANCER had its first televised program to help raise awareness and funding to fight all forms of cancers. I remember we had decided we were going to have a "Stand Up To Cancer" party in Nick's room that night. I don't recall it being much of a party, but, Nick and Kate and I were all there in Nick's room watching the program. There was a very surreal quality to the whole thing. Here we all were in the cancer center at Hopkins, here was our beautiful sweet Nick with leukemia. Here was Nick just nine days after his BMT. Here we were all shiny and new, praying and hoping that our Nick would beat this thing. In the battle against Nick's leukemia, we had only been through a few minor skirmishes at this point. We had no idea how cunning our enemy was and no idea how badly Nick would be wounded in this war. Listening to the stories brought tears to my eyes and pain to my heart. I prayed with all my heart that Nickolas would be a survivor, instead, he became a statistic; another life lost to cancer. The losses happen every day to young and old. So many families have lost loved ones to this horrible disease. This year Stand Up To Cancer will be having another televised event on September 10th. Please check out their website and read about the good work they are doing to fund cancer research. It is quite amazing. This song was written to help raise awareness. This video is Hans Zimmer's adaptation of the song. It says everything I am feeling about my sweet son and no words are necessary.

Flags In 2010

2010-05-27T12:30:00.003-04:00

We who are left how shall we look again
Happily on the sun or feel the rain
Without remembering how they who went
Ungrudgingly and spent
Their lives for us loved, too, the sun and rain?
~Wilfred Wilson Gibson

Today at Arlington Cemetery the "flags-in" ceremony will take place at 4PM. Soldiers from the 3rd U.S. Infantry Regiment (The Old Guard) will be joined by service members from the U.S. Marine Corps Ceremonial and Guard Company, U.S. Navy Ceremonial Guard, U.S. Air Force Honor Guard and the U.S. Coast Guard Ceremonial Honor Guard in placing more than 250,000 grave decorating flags at Arlington National Cemetery. The flags will remain through Memorial Day.

On thy grave the rain shall fall from the eyes of a mighty nation! ~Thomas William Parsons

No May Flowers

2010-05-25T23:23:00.005-04:00

This photo was taken on May 25th, 2009. Nick had only been home about twelve days. His head was still bald from the effects of the radiation treatments in April and of course, he had to wear the oxygen continuously. This was a rare moment when Nick actually was able to go outside and enjoy not being cooped up in the house or at the hospital. If I didn't know better, when I look at this picture, I might be able to convince myself that Nick was actually getting better; but, this was far from the truth and looks can be deceiving. Although Nick looks very pale, he seems to be relatively comfortable. However anytime Nick would move he would get into significant breathing distress. When Nick was sitting still or lying down, his lungs could manage (with the help of oxygen and an increased HR) to questionably meet his bodies demand. Nick's continued weight loss and inability to gain weight were also a significant indicator of the degree of Nick's lung damage. ANY kind of normal activity of daily living would cause Nick to rapidly decompensate, therefore, he was not able to do even the most simple tasks of self-care. I do not believe ANYONE at the HOP understood the extent of Nick's deterioration before they discharged him from the hospital both times in May!

Much earlier that day, Nick tried to get in the shower and sit and wash up. Pretty much from the moment he got in, he started breathing hard and feeling really bad. I helped him wash up as fast as I could so he could get out. He was SITTING on a shower chair with his oxygen on full tilt. He couldn't even breathe let alone wash up. His color was changing in front of my eyes. He looked so bad I was afraid he was going to pass out in the tub. Nick NEVER got a shower or normal bath ever again. Sometimes when I get in the shower this memory comes back to haunt me and I just cry and cry and the water washes away the tears but not the sadness and grief I feel for my poor sweet Nickolas and all he suffered...how even the simplest of things were taken from him. When I read my notes from this day it just breaks my heart. The shirt Nick is wearing is folded up on his bed. I cry and hold it close to me most every night before I go to bed. His posture shows a position that people often take subconsciously to help air move in and out of there lungs more easily when there is a problem with breathing or oxygenation. It has been very hard for me lately. I don't know why. All I know is that I carry this deep sadness with me no matter what is going on in my life. I miss my sweet boy so much. Here are my notes from that day.

1. RESP STATUS:
Nick increasing more SOB, with HR baseline elevated. Increased stress with activity, HR up, RR up, WOB up and having to rest a lot. Increasing O2 demand at rest and w/ activity. Spent most of weekend on 4-6L

93-94% on 4L w/ HR 130 bpm RR = 28/min. 94-95% w/ HR 108-114 bpm

Still w/ junky cough despite dosing w/ cough syrup for past week.

BS on right side diminished and hyperresonant BS especially in RUL; crepitus seems to be decreasing but still w/ audible crackles scattered throughout lung fields.

Exp wheezing noted on RUL

2. SHOWER - Nick had breakfast in bed, then planned to get washed up. Rested in bed for quite a while (hour to hour and a half) Then Nick decided that he had to use the BR before getting in shower. When done, Nick sat on chair in tub, I had to basically wash him up. He was VERY SOB THE ENTIRE TIME! RR WAS UP AND HE WAS VERY UNCOMFORTABLE ON 6L NC!! The whole process took 30-45 minutes.

3. Appetite good, but no weight gain.

4. Started Nystatin swish & spit due to thrush in back of throat.

5. PREDNISONE - decreased to 40mg/day since Saturday, May 23rd. Question if Nick's lungs are tolerating this decrease.

6. Nick very pale. Not sure why!!

7. Email to Dr. Pants....he wants Nick to come down to the Hop tomorrow to get a CT scan and start back on higher dose steriods...Nick not happy about this. Not sure what he will want to do...I hate steroids!

What's Behind and What's Before

2010-05-24T09:30:00.007-04:00

Sara is graduating from college today. She will be receiving a Bachelor's of Social Work from University of Maryland at Baltimore County. I am so proud of her and I love her so. Sara is my sweet little girl and I cannot believe she is all grown up. How does the time go by so fast? This fall she will be heading back to school at University of Maryland at Baltimore to get her Master's in Social Work. Sara was accepted into the accelerated program so she only has to take one year of graduate courses in order to get her Master's. It took Sara a while to figure out what degree she wanted to pursue, but, there was never any doubt in my mind that she would eventually figure it out. Sara is a strong willed young woman who knows what she wants in this world and she is willing to work hard to reach her goals. She is truly loved by family and friends. She is loving and generous of spirit just like her brother. Sara has had more loss in her young life than anyone her age should EVER have to experience. I believe this has formed the person she is and has forever changed how she views this world. The fragility of life is not lost on her and she is very good at keeping what's important in the forefront. I wish Nickolas could have been here to share in this big moment. I know Sara wanted that too. She misses her brudder so much. My heart is broken every day by something that reminds me that my sweet son is gone from this world. Sara's graduation is one of those somethings that brings back all the pain of his loss. A reminder of all the future milestones and memories he will not be a part of ever again. That is so hard to really, truly understand. I am still trying to figure it all out. In the meanwhile, today's memories were made without brudder here with us. Sara is off celebrating with her friends. Glenn has gone to bed and I am sitting here crying and wondering how I will be able to keep doing this for the rest of my life.

I was thinking today, how it is already almost the end of May. Another Memorial Day is almost here. This Thursday will be "flags in" at Arlington Cemetery. I was thinking how last year at this time Nick was home on his brief respite between his two long admissions. Last year at this time, we were enjoying the final days of Nick's life at home and we did not even know it. And how two years ago in May of 2008, it would not be long before our worlds would be blown to bits by the news that Nick had leukemia. It seems like a lifetime ago. It seems like just yesterday.
The memories and the moments of pain still bring me to my knees.

I love you my sweet Sara. I am so proud of you and I know you will have your brother in your heart and by your side as you travel through this life. I love you my sweet Nickolas. I miss you more than words will ever be able to express. I hope I can one day understand why you had to leave us behind. Right now all I know is it hurts so much. Please come home and see us. Mom

Nika

2010-05-19T01:28:00.007-04:00

I decided to post this picture of a butterfly because it was taken by a person who came into my world through my blog. The photo was taken by Annie B. She too has a blog. Her son was also diagnosed with CML. He is doing well. He is around the same age as Nick. She has been so supportive of me throughout Nick's illness and since Nick's death. One time she sent me flowers. Imagine my surprise when these flowers showed up on my doorstep! I was so touched that she would reach out to me like that. One time she sent a beautiful crystal which reflects the sunlight and reminds me every day that people do care. People come into your life when you need them I guess. I don't quite understand it all. I just know that many "strangers" have reached out to me and offered their hand in comfort and kindness. I am so grateful for that. I have discovered that going through grief, experiencing this "child-loss" is very isolating. I never really got that before, but, I do now. I don't understand all the reasons why...I am sure I am the cause of most of it.
I don't know what I want or need. I feel like I am completely and utterly lost at times. I am most thankful for the people in my life who have figured out a way to reach out, who have figured out that fine line between being persistent versus being intrusive. I do not want to be alone in this.
I need people who can listen to me. I need to talk about Nick and know that EVERYONE loved him, misses him and wants to help us keep his memory alive. I cannot be around people who do not understand these things. I am always going to be sad. When you lose that most precious little being that you held in your arms on the day he or she was born, their is no way you are not going to be forever changed by that experience. There is no way your heart is not going to break every day for the rest of your life. There is nothing anyone can say to make it hurt more. And yet it seems people are afraid and they don't know what to say. Saying nothing is worse than saying something. Trust me on this.

Losing Nick is in the forefront of my thoughts most every day and every night. I NEED to talk about so many thoughts and feelings. After awhile, the pressure just builds up. That is why I look forward to going to my Compassionate Friends meetings. These are people who know what I am going through, they know what I am feeling, they have walked in my shoes. They are still walking in those shoes. I don't feel like I am crazy when I am with these fellow child-loss survivors. I wish I could explain how good that makes me feel. The meetings can be very sad. Everyone there has lost a child. In my group, for some reason, everyone there has lost adult children. Some of us are still within the first year of loss, for others it has been much longer, and yet, the pain and the feelings are universal. The butterfly is used by the Compassionate Friends group. Here is a description from their website.

Why Butterflies?

Since the early centuries, the butterfly has symbolized renewed life. The caterpillar signifies life here on earth; the cocoon, death; and the butterfly, the emergence of the dead into a new, beautiful and freer existence. Frequently, the butterfly is seen with the word "Nika," which means victory. Elisabeth Kübler-Ross movingly tells of seeing butterflies drawn all over the walls of the children's dormitories in the World War II concentration camps. Since Elisabeth believes in the innate intuitiveness of children, she concludes that these children knew their fate and were leaving us a message. Many members of The Compassionate Friends embrace the butterfly as a symbol--a sign of hope to them that their children are living in another dimension with greater beauty and freedom - a comforting thought to many.

When I first joined the group I was not sure if I would like it. I did not know quite what to make of all the symbols and ceremonies and meetings. Now I feel like this group is a lifeline for me. If I hold on long enough, perhaps, I can pull myself to a safe place where I can figure out how to live in a world that does not include my only son, my sweet first-born child, Nickolas. I love you always and forever Nick. Please come home to see your Mama.

"A butterfly lights beside us like a sunbeam
And for a brief moment its beauty
And its glory belong to our world
But then it flies again
And though we wish it could have stayed...
We feel lucky to have seen it." ~Author Unknown

Fish & Whistle

2010-05-13T00:27:00.002-04:00

In September of 2008, Nick was still recovering from his bone marrow transplant. I remember the one thing he kept talking about doing when he got out of the hospital was going fishing with his Dad and Uncle Steve. Of course, all I could do was worry about all the bad things that might happen, like being out in the sun, which was bad for his skin and any sunburn could have triggered GVHD in his skin. I worried about his low counts and his weakened immune system and pictured all the germy things he would be touching. I worried about him getting a hook stuck in his finger. I worried about Nick getting fatigued from over doing things too early and that causing him to have a setback. .I kept thinking about the time Glenn took Nick out on a boat with his brother. Nick was very young, maybe four? A storm started to kick up and just as they began to head back the engine on the boat gave out. The boat was being tossed and turned by waves and Glenn told me later he was very upset. Nick was wearing a life preserver and clinging to some aspect of the boat for dear life. They did get home safe and sound and I only found out all this after the fact. But, it scared me so much to know my little boy was in danger! This only confirmed and justified in my mind all my concerns and worries. I have always been a worrier. I cannot seem to help myself.

I did not think about all the joy this fishing trip would bring to Nick. I did not think of the peacefulness of the water. The stillness and beauty of the landscape around him. The happiness of being with his Dad and his Uncle and enjoying some "down" time from all things leukemia. I knew that Nick would love going fishing. I just wanted him to get stronger first. I never thought Nick would be so so sick! I never ever thought Nick would have so many disappointments as time went by. I never thought the list would be so long. I never thought it would hurt so much every time I think of all the things my poor boy didn't get to do. Was I wrong to worry? Should I have encouraged Nick to throw caution to the wind knowing he might be putting his life at risk?
We did the best we could with the information we had at the time. We thought we would have more time to be together, to share, to talk, to hug, to smile, to tell stories, to go hiking, to go camping, to listen to music, to sing songs and weave new tales, to go fishing, to make new memories that would last us for the rest of our lives. That time was not meant to be. Those new memories will never be made. All I have our the old ones and I never realized how hard it is to remember the old ones. I have no video of Nick when he was young. We could not afford a video camera back in the day. I have nothing except pictures and my weary brain. I feel like whole sections of Nick's life are missing from my memory, especially when he was away at college. He was there for five years and for four of those years, he rarely came home. So many lost opportunities.

I miss you with all my heart Nick. I cannot believe you have been gone from us for nine months.
It hurts so much. I long to see you and hug you and tell you how much I love you my son. Your death still haunts me and tears at my heart. I am tired of living in this world without you. Please come home to your Mama.

"Father forgive us for what we must do
You forgive us we'll forgive you
We'll forgive each other till we both turn blue
Then we'll whistle and go fishing in heaven."
~John Prine

Mother's Day

2010-05-09T23:11:00.008-04:00

I was blessed with two wonderful children who have brought so much joy to my life. I thought I would be watching both of them find their way through this world. I thought wrong I guess. Nickolas is gone forever from my life. Nick doesn't need his Mom anymore. Mother's Day will always bring bittersweet memories now.

Last year, Nick was once again in the hospital on Mother's Day. He had to be readmitted on May 9th. My Mom, Nick's grandma, reminded me today of the story of that day. Nick was so upset to go into the hospital because #1 - he had just gotten out of the damn hospital three days before and #2 - he had planned a Mother's Day breakfast at our house for that Sunday. Glenn was going to cook a fancy breakfast for all of us including my mom and my sister for Mother's Day. Nick was so excited about these plans and he really did not want to go to the hospital because he so wanted to have this breakfast, with "three of his favorite girls." Nick had to go to the hospital because the air in his chest had come back. We tried to recreate the Mother's Day breakfast in the hospital, but, nothing in the hospital is ever quite the same as when you are home. Just another disappointment on a long list of many.

The other day I was cleaning out another spot in my house and I found some Mother's Day cards that Nickolas had given me a few years ago. I cannot tell you how much having those cards mean to me. Nickolas wrote in the cards and they break my heart to read them now. But, the old cards from Nick are the only ones I will ever have. I will never get another Mother's Day card from my son.

The picture above was taken in late May 2009, after Nick came home from this week long May admission. I look at this picture and I see my babies all grown up. I see how much they love each other. I see how bravely they are each hoping that everything is going to turn out alright. I also see the stark contrast between a healthy Sara and a very sick Nick. I look at this picture and the harsh reality of the toll Nick's cancer has taken on him are obvious. Nick's color is so pale, his face swollen from steroids while his body was wasting away, his head bald from chemotherapy, and the latest insult, the oxygen needed to help Nick's breathing due to the damage in his lungs. The pain this causes in my heart will never cease.

To My Son

Missing you with all my heart.

Out of time, we were

Torn apart.

Hard to know just where you are, and yet

Each night I see a star,

Reminds me you are always near, yet

Still I cry my sorrow's tears.

Dearest son, my life's sweet joy

Always you will be my boy.

Your Mom loves you.

Lost Hope

2010-05-06T02:52:00.003-04:00

On May 5th, Nick was finally discharged home after being in the hospital for 58 days. Nick left the hospital on oxygen, unable to walk more than a few yards without getting weak and short of breath. He had to ride in a wheelchair on all our trips back and forth to the hospital. We had a handicap hanger for the car. Nick would only be home for three days before he would have to return again for another week due to his pnuemomediastinum comiong back! Here are the notes I wrote on his first day home.

1. Nick slept OK through the night on 2L NC, got up later, laid in bed w/ Sara for a while.

2. Appetite good t/o day. Needs to push fluids though. Drank his allotment of water and then some w/ other fluids.

3. RESP - seems to be coughing more than prior to discharge. Spent most of day on 2L NC, however, increased RR 28-38 with activity. Nick states he seems more tired and getting more SOB with activity today. Sats on NC of 2L running 93-94%.

Lungs sound audibly junky and questionably wheezing ?? Listened w/ stethoscope and did not hear any wheezing, crackles or other. RUL and RML remain diminshed. Nick using inhaler t/o day.

When taking walk w/ Zeke - Nick walked on 6L, but, came back very SOB, pale, breathing fast 36-38. Sats down to 90%. HR up to 130's. Wondering if HCT low??
Felt like he was working hard and felt like he didn't go that far. Seems to me like his WOB is increased as compared to that of hospital?? Especially since he is walking on higher liter flow. Nick felt like legs were unsteady and that is why he came back.

4. Zeke out to visit in afternoon, spent a good amount of time hanging w/ Nick

5. Checking glucose - needed insulin before lunch and dinner.

6. Started Mg oxide tabs - watch for diarrhea!!

7. Nick's left arm very bruised up and down length of arm and area of pressure dressing.

8. When Nick was getting in bed, noted his left foot was paler than his right foot. Why??
Right foot appeared slightly ruddier.

9. Companion chair was delivered today. Finally have everything, need to pick-up rx. from CVS tomorrow.

I find this so sad. Nick was already doing poorly after his first night home and yet we still had hope that he would get well. When you think about your child dying, hope is all you have.

Madness of the Heart

2010-05-01T23:36:00.010-04:00

These pictures were taken towards the end of Nick's fifty-eight day admission. The picture with Grandma was taken down in the lobby of the Weinberg center. Grandma came on the weekend and we all went down there so Grandma could play piano for Nick. I know Nick enjoyed listening to the music. And yet, I know he was sad. I am sure he was scared. I wonder what was going through his mind at this surreal point in his life. I can only imagine. My God what are we all doing in a cancer center, playing piano and singing songs, while I sit here in a wheelchair with oxygen on my face because I can't walk and I can barely sit here and just breathe.

At this point, Nick had been through so much and still no one knew for sure what was wrong with Nick's lungs. The theory was that Nick's lungs were being attacked by his new marrow and that he had lung GVHD. The autopsy of Nick's lungs showed that EVERYONE was WRONG about that! Nick did not have lung GVH at all!!!!! Compared to earlier days of this admission with the fever, the low counts, the radiations treatments, the thousands of medications he was having pumped into his body, and the constant scanning and testing, Nick actually "appeared" to be somewhat improved. However, his breathing status was not at all improved. It was only getting worse.

The patterns were there, but, no one chose to see them. With each day that passed, Nick's lungs were being insidiously damaged. At the end of this admission, Nick could still get out of bed to sit in a chair and walk to the bathroom in his room, but, he had to be on oxygen. If he was still and quiet, the demand on his lungs was less and therefore, it seemed he was OK. But when Nick would get up to walk a lap around the hallway, he would return to the room breathing so hard it was frightening. His respiratory rate would be up in the 30's, his heart rate would get up into the 130-140/minute range (Nick's HR had been running high (114-120bpm) for months due to his undiagnosed hypoxia!!!! (A normal adult resting HR should be 60-80 bpm.) Nick's high heart rate was a compensatory mechanism; his body needed more oxygen, the body could not get more oxygen, therefore, pump what you have around faster!

Because Nick was young and his other major organs were strong, his body did amazing things for a LONG time to keep him going.If had been older, the deterioration would have happened faster. After his one lap, Nick would have to sit for five to fifteen minutes to recover enough to walk another lap.

I remember distinctly the nurses blaming this "shortness of breath" on Nick being out of shape, even at this late date in time!!! Shortness of breath is an UNDERSTATEMENT of the degree of respiratory distress that ensued whenever Nick tried to do ANYTHING that involved MOVING! Which is almost everything in life if you hadn't noticed.

But, somehow this was all OK and Nick was sent home like this....thinking that this would be able to be fixed and he would return to his normal self! Nick was never told that his lungs would only continue to get worse.

The doctors were trying to blame Nick's lung damage on the GVHD even though Nick never had a serious case of any kind of GVH. At the end of this admission, they did a liver biopsy, because I think the doctors thought for sure they were going to find he had liver GVH as well....NICK DID NOT HAVE LIVER GVH EITHER!!!

When they sent us home, there were no fond farewells. There were no discussions of death or dying. There were no statements like those listed below.

"Sorry Nick there is nothing else we can do for you."

"Nick, get your affairs in order because it won't be long before you are outta here."

"Folks, it's time to look into hospice care, because your lungs are on the fast track to hell in a hand basket and there is nothing that will fix these mother's, so plan how you want to die."

"If you keep coming back into the hospital, things won't go well for you. So stay the f*^%ck home."

"Take the time you have, get in your wheel chair and roll as fast as you can to some sandy beach and watch the last few sunsets you will ever see in your life."

"Sorry we didn't figure this out sooner Nick, but, your lungs are for shit and we didn't see this coming, and we don't know what caused it, and we don't know how to fix it. So....golly gee we feel bad about this and all, but, oh well thems the breaks kid. Get out....we need the bed!"

"We don't really think that physical therapy or pulmonary rehab or photopheresis is really gonna help. These treatments will be a LOOOOOOOOONG shot! Odds are this is NOT going to work, so don't waste the precious time you have driving back and forth to this dog and pony show we call a hospital!!! Hell no! Go do what you want to do NOW! After all Nick, the least we can do for you (oh yeah and for the too bitchy, pain in the ass Mama Bear person) the LEAST we can do is be honest with you about our failures!!!!

God, how I hate them all for taking my beautiful son from me. And if they didn't take him then who the hell did? Who is responsible for this? Why? Why? Why? Why did Nickolas have to go through all of this torture and suffering for nothing? I am so sorry my sweet Nick.

“Hatred is the madness of the heart” Lord Byron

Had You Such A Loss

2010-04-29T12:38:00.009-04:00

Skies no longer blue.
My broken heart is filled with thoughts of you.
Lost in a staggering malaise.
Lifeless eyes
Haunt my lonely days.
Pieces of shattered dreams
Crushed beneath my feet.
Aimlessly walking a
Stark universe.

Please check out this post by another Mom grieving for her precious daughter. Shakespeare knows of what he speaks! Click here to read more.

I love you my sweet son...you are my sorrow's cure. Please come home to your Mama.

Like Yesterday

2010-04-23T01:35:00.005-04:00

Here is my sweet boy rockin' a hoodie that Kate had given him at some point during his March/April/May admission. I think this picture was taken around this time last year. Oriole season had started so Nick was sporting the hat in hopes that it would help them win some games. At this point, Nick had been in the hospital for forty-six days and counting. Things were still not right with Nick's lungs, but, at times during the day he would wear the cannula instead of the mask. He was so thin, but, I think he still had some of the steroid face which always made him look plump in the face, but, not anywhere else. You can see the muscles in his neck protruding! Nick always tried to give a smile for the pictures, but, it never quite reached his eyes. It just breaks my heart. I continue to struggle through each day and night. I have really felt very lifeless and zombie like these past weeks. I cannot explain it. There is no explanation for the stark reality of this existence. Is this really happening? I am waiting to wake up from this nightmare and find my son sitting on the couch watching some show on TV and getting ready to chow down on some apple fritters with a nice cup of hot tea. I long to hear his voice call out to me, "Are you alright Mom?" Nick would always do that if he thought I had hurt myself..."Are you alright Mom?" I want to walk by his room in the morning and see him hunkered down under his covers snoozing away or maybe reading one of his many books. I want to hear his thoughts and ideas on anything. I want to reach out and hold his hand and give him a hug. I miss him SO MUCH!

Nickolas, I love you more than a wagon full of puppies. Please come home and see your Mama.

Your absence has gone through me
Like a thread through a needle.
Everything I do is stitched with its color.
~W.S. Merwin

When The Morning Was Shining

2010-04-17T01:53:00.002-04:00

I Saw From the Beach

by Thomas Moore

I saw from the beach, when the morning was shining,
A bark o'er the waters move gloriously on;
I came when the sun o'er that beach was declining,
The bark was still there, but the waters were gone.

And such is the fate of our life's early promise,
So passing the spring-tide of joy we have known;
Each wave that we danced on at morning ebbs from us,
And leaves us, at eve, on the bleak shore alone.

Oh, who would not welcome that moment's returning
When passion first waked a new life through his frame,
And his soul, like the wood that grows precious in burning,
Gave out all its sweets to love's exquisite flame.

Oh my sweet Nick, I have seen what you were writing on the backs of all those papers. The ones they gave you to test your sanity. You were always of sound mind, of this there was no doubt. I always wondered what you wrote. Those wishes break my mother's heart and cause tears of sorrow to flow from my eyes. I wanted everything for you. I wanted to be able to give you those simple wishes for the rest of your life. I hope you have found a beautiful beach. I only wish I could be there with you, to hug you and hold you again and tell you how much I have missed you over these last two hundred and forty-seven days. I love you more than a wagon full of puppies. Your Dad and Shu-shu miss you too. Please come home. Mom

Scars Healing Wrong

2010-04-13T02:44:00.000-04:00

It has been eight months since Nick left this world and the wounds on my heart run deep. The healing process is so slow. As soon the wound shows even a slight scab, a painful memory or image comes and causes this wound to reopen. This is the process. This is normal. This will take a long time. A wound this big will leave a big scar. I still have so much anger about what happened to Nick. I am still trying to figure out how to live with all that is in my head.

On this date one year ago, Nick had been in the hospital for thirty-six days! This picture was taken after Nick had gotten his "hair" washed. Of course, he didn't really have any hair to wash. His skin was sloughing off due to the radiation treatments (which he completed on April 2nd!). Nick was on some form of oxygen for the duration of this admission. He would never be off oxygen again because his lungs were so bad! As you can see by his skinny arms, he had lost a lot of weight by this point. When I see these pictures, the memories of this time come back so strong. It is like it all happened just yesterday. I don't know if I will ever be able to forget these images and the sad eyes of my son. Nick was really hurting during this time. His mouth and his throat were a mess from the radiation. He was not able to eat for weeks and pain medicine really didn't do much at all. There were so many things going on throughout this admission. But, ultimately, it was the status of Nick's breathing that continued to be ignored and attributed to anything and everything under the sun. No one really knew what the hell was going on with Nick's lungs. There was always feeling that if this was an infection it would get better right?????????

It would be on April 14th that Nick would finally go for pulmonary function testing, almost EIGHT MONTHS AFTER HIS BMT!! Not at the three month mark, not when all the coughing and respiratory symptoms started, not when there were suddenly changes noted on CT scan, not at the six month mark, not when he continued to have increased breathing rate, increased heart rate, FATIGUE, FATIGUE, decreased appetite, WEIGHT LOSS, exertional dyspnea, and generally an ongoing overall shitty experience for weeks and months after his BMT, no let's wait until Nick has to be readmitted to the hospital and discover that his room air sats are 88% and he needs to be on oxygen FOR THE REST OF HIS LIFE (which would be four months!!!) And then let's wait until he is thirty-seven days into an admission from hell to get pulmonary function tests!!

Today I was down at the hospital...ran into someone from 5B. He asked me how I was doing. I said, "Not good." His reply, "Why, what's wrong?" I couldn't believe I was asked this! In my head I said, "Oh nothing, my child is dead that's all." Out loud I said, "Well it has been very difficult learning to live without my son." Similar experiences have happened in the last few days to weeks and I have suddenly come to the horrible realization that while these wounds are so fresh for me, they are not for everyone else. I feel like Nick just died yesterday. I am hurting. I am crying. I am struggling to find meaning. I feel like I am going crazy. It has been eight months and I feel that "you need to move on" sentiment starting to roll ashore. No one has ever said that to me in words, but, that is how it feels. Now I can see why the longer my grief continues on I will not be able to say how I am really feeling. Not without getting that kind of "Oh, what's wrong?" reaction anyway. I will have to resort to my prepared answer, "I am doing OK all things considered."

This response is what the Compassionate Friends group suggests to say when people ask how you are doing. I say, "What the f&*^%k kind of bullsh*t is that?" The problem is most people will take that answer to the bank. That let's everybody off the hook. People can go on their merry way and breathe a sigh of relief, "Oh, hey, she is doing OK all things considered." No need for more discussion. No need to delve any deeper into that one. It is so hard to hold things in all the time. To put a fake smile on my face and pretend everything is OK for what purpose?? This is why I have to stay away from people. I don't feel safe in most environments. It is not worth the emotional energy it takes to go about pretending everything is OK now!

NEWSFLASH: IT IS NOT F%$#@*KING OK!!!!! I just have to keep myself contained to those few people who somehow get it and are there for me. That is all I can do. And those people have lives and I have to get that and figure out how to do this pretty much on my own. It is the most horrible thing. I wish I could explain it so people could understand. Eight months without my boy. The sadness pulls me down. I am doing all that I can. I don't want to do anything but see Nick and be with him, wherever he is. There are times when ending all this seems like a good idea. I am tired and I see no end to this pain, no purpose for this wretched existence. When I see how it goes when people leave this world, I think what is the big deal? People will move on, that 's what people do. In eight months or so, all will be fine with the world.

One More Time With Feeling by Regina Spektor

Your stitches are all out
But your scars are healing wrong
The helium balloon inside your room has come undone
And it's pushing up at the ceiling
And the flickering lights it cannot get beyond

Everyone takes turns
Now it's yours to play the part
And they're sitting all around you
Holding copies of your chart
And the misery inside their eyes is
Synchronized and reflecting into yours

Hold on!
One more time with feeling
Try it again, breathing's just a rhythm
Say it in your mind until you know that the words are right
This is why we fight

You thought by now you'd be
So much better than you are
You thought by now they'd see
That you have come so far

And the pride inside their eyes
Would synchronize into a love you've never known
So much more than you've been show

Hold on!
One more time with feeling
Try it again, breathing's just a rhythm
Say it in your mind until you know that the
Words are right

This is why we fight

I am so sorry my sweet Nick. You fought so hard. I fought for you as hard as I could. I wish we could have won this fight. I miss you my sweet boy. Please come home to your Mama.

Secret Water

2010-04-08T18:42:00.004-04:00

The Well of Grief

Those who will not slip beneath
the still surface of the well of grief

turning downward through its black water
to the place we cannot breathe

will never know the source from which we drink,
the secret water, cold and clear,

nor find in the darkness glimmering
the small round coins
thrown by those who wished for something else.

A poem written by David Whyte from his book entitled "Where Many Rivers Meet." Glenn showed me this poem from a poetry book I had given him for Christmas, "Risking Everything
110 Poems of Love and Revelation" edited by Roger Housden.

Good Eggs

2010-04-04T01:54:00.001-04:00

Here are two of my favorite Easter babies. This is our first Easter without Nickolas. It is very strange and sad. When I was working as a nurse when the kids were young, I always had to work on Easter. We had to do every third weekend back in those days and for YEARS, my weekend fell on EASTER. I remember putting their baskets together and writing in their cards and being so upset that I couldn't be with them. This picture was taken at Pip and Nana's house. Glenn would take them over for the Easter egg hunt and dinner. This is Nick and Sara in the back yard looking for eggs. Obviously, Sara was pretty young because she is still wearing dresses! And then there is my little man Nick with his dapper penny loafers! I missed so many of those Easter memories when the two of them were little. I don't even remember last Easter. All I know is that Nick was in the hospital for all of March and April and Easter fell in there somewhere. Now all I can think of is my son's sweet face and how there won't be any more Easter memories for us with Nick. I made a basket for Sara last night. It doesn't feel right not making one for Nick. It is such a horrible realization each time I think about Nick being gone. No Easter basket needed. No Easter card needed. Another Mom who also lost her 20 year old son Grant to leukemia a little after Nick told this story on Grant's Caring Bridge site. She told of how she had gone shopping and she put three chocolate bunnies in the basket without even thinking. Then she realized what she had done and she said, "I still have three children in my heart." And I still have two children in mine. I am so sad. I miss you Nickolas. It will never be the same without you near. I love you always, Mom.

Suffer

2010-04-02T11:34:00.009-04:00

This is Nick on his way to radiation via wheelchair with one of his favorite nurses. On this date last year, Nick made his last trip to the basement of the cancer center! Nick was only supposed to get twelve treatments, but, they decided to make it a baker's dozen and he had to go for thirteen treatments instead. This was hospital day #25 and poor Nick was totally wiped out and exhausted. Of course the biggest part of this fatigue, weight loss, and lack of energy, had to do with the deterioration of his lung capacity. At this point, the doctors hadn't even done the pulmonary function tests yet, so they had no clue how BAD his lungs were. I really don't know how he did it. It is surely a testament to Nick's will power and his ability to put mind over matter. God bless his heart and soul. When I think of all he went through it is just agonizing for me. I try not to think about it all the time, but, right now, this is what I am doing. I have to do this. I don't understand why, but, I just know. There is so much to process and I have to find a place to put all this pain, all the bad things that happened to Nick that I had to witness and I was powerless to control. Pictures like the one below bring back those memories and all the emotional pain that goes with watching your child go through something like this.

Looking at Nick's head locked into this horrible device, seeing his body wasting away, while trying to figure out how to fix his "broken wings" is devastating to me and I have already lived it once. The anger that I feel toward all the people who kept telling me how "fine" he was, the people who basically ignored this breathing issues for months, the people who didn't think his weight loss was an issue, the people who didn't' really care about Nick at all. God how that hurts. I tried to protect Nick and I failed. Please no need to respond to that...this is a natural feeling for parents who have lost a child. We are wired to protect our children and when that does not happen, we feel like we have failed. I know what I did and my brain knows that I did not fail my son, it is just my heart that does not want to follow. I don't expect people to understand this journey, I only hope you will try to walk along with me for a while and offer your love and support, because that is what I need to get through this darkness and come out on the other side.

“Suffering is permanent, obscure and dark, And shares the nature of infinity” William Wordsworth

“You must submit to supreme suffering in order to discover the completion of joy” John Calvin

Vortex of Grief

2010-03-31T13:56:00.005-04:00

Every day of Nick's radiation treatments seemed endless. The worry list was endless. Would they get the dosing right? Would everything line up right? Would Nick's breathing be able to handle being strapped into that torture device for however long it would take on this day? How would he feel when he was done? How long would the mucositis in his mouth prevent him from eating? How much more weight would he lose? And the ultimate question, would it work? This is a poem I wrote one day while I sat in the basement of the Weinberg building. There is a waiting room there for family members and patients awaiting treatment. Many of the patients were there as outpatients and they had to change into a hospital gown and wait for their turn to be blasted. It was so sad and scary to sit there waiting for Nick to come forth from that horrible cave of darkness.

Untitled

Half clothed warriors
Fighting an unseen foe
Waiting to do battle
Suiting up in their armor and masks.

Lines of black and green traverse the skin,
As if the coloring book of a mad scientist or
Some child gone wild with magic markers.

Faces about the waiting room staring at one another
For understanding and support.
Some are hopeful with cautious optimism
Others are more battle weary and resigned to
The futility of it all.

The sign reads, "CAUTION"
"HIGH RADIATION AREA."
All who pass through these gates beware.
Your death or your salvation await you.

Enter the arena, armed with nothing more
Than free will and the desire to beat back
The enemy as it tries to envelope your soul.

Place yourself prone on the table, vulnerable
And alone. Your face pressed into the
Honeycomb mold that will hold you captive
For the duration of this round.

What is it like to see the "light" of the gamma rays
As they seek and destroy all that lie in their path?
Will all leukemia cells please report immediately
To hell's kitchen! Your table is about to be seated.

The fear is always there. What if this doesn't work?
What other dangers will now be lurking?
When will the side effects begin?
Waiting, wondering, preparing again.

Baby fine hair so carefully cultivated, soon to disappear.
A patchy reminder of things we would rather forget.
Gains so valiantly achieved blown over
like a tree in the eye of a hurricane.
No match for these photon forces.

Spiraling downward.
There is no end to the painful memories.
The warmth of spring does not reach to my heart.
I want my boy back.
Do you hear me? I WANT MY BOY BACK!!!!
Angry and saddened by the futility of this longing.
No answers to be found.
Spinning endlessly in this vortex of grief.

Longing of the Soul

2010-03-28T18:21:00.007-04:00

This is my poor sweet boy with his "Woodstock" hair, trying to rest after his radiation treatments had started. I don't remember what specific day it was, but, I am pretty sure it was near the end of March 2009. His hair had started to fall out again due to all the radiation, leaving him with his little Woodstock poofies. Nick hadn't yet decided to shave it all off, that would come later in this admission.

On this date last year, Nick was still in Room 1 on 5B. It was the weekend and I showed up later in the afternoon with Aunt Barbara to find everyone gathered in Nick's room. Nick had gone into a breathing fit after a trip to the bathroom and they had to call the nurse and doctor to his room because he couldn't breathe! This was not the first episode breathing difficulty nor would it be the last. I remember the horrible feeling in the pit of my stomach when I showed up "late" for the first time since Nick had been admitted to find things going down the dumper. The doctor wanted to get some blood to check Nick's breathing numbers, but, I think he was so anxious and scared he didn't want them to draw it right then. Plus this test is painful; they have to stick a needle straight into your wrist while trying to find the radial artery which is like the size of a piece of thread. Nick was coughing and coughing and he couldn't catch his breath. The effort of Nick just trying to walk to the bathroom was all it took to send him into significant respiratory distress. And yet, throughout this admission and the months prior to it, the general reaction seemed to be..."Is this a problem?" Well this time, it must have been pretty bad, because everyone came a running and they couldn't blame it on me, cause I WASN'T EVEN THERE!!!! When I did arrive, I had no idea what had happened. It was very scary. They had to take Nick off his cannula and put him back on his high flow face mask at a much higher oxygen level. After some time had passed, Nick was able to catch his breath and settle down a little bit. I believe at this point we were already using the fan to blow on Nick to try and help him relax and cool down. I can't remember everything, I just remember how horrible it felt, the sheer terror of watching Nickolas go through all this and how awful it felt to be powerless to help him. To watch someone you love, let alone your child, go through this kind of suffering, well I can't begin to describe how much that hurts in my heart every day.

On that day, we did our best to push our fears to the back of our minds. We kept asking questions, we kept challenging the doctors to figure out what the hell was going on with Nick and his breathing. No one seemed to understand the severity of his lung damage at this point and they certainly did not know why. This was not their focus. They were focused on the leukemia and the radiation and looking for infections that were debated by their own infectious disease doctors. For us, there was nothing to do but keep pushing onward. I can remember this time like it was yesterday...all of it! This was about the time that Dr. Gallstone (formerly known as Dr. ??) showed up and made things even worse with his arrogant, supercilious and pompous attitude. Why did we have to deal with those kind of people when Nick was so sick and hurting so much? What lesson was I supposed to learn from that experience? I just don't even know what to say sometimes about all Nick went through at the hands of these punks! Definition of punk: a disrespectful, rude, or otherwise unpleasant person! (Now I don't throw all of the people at the Hop into this category...just a select few!) However, when someones life is hanging in the balance you shouldn't have to deal with any punks! As Glenn just threw in..."Life should be punk free!"

I miss my sweet boy with all of my heart and soul. I grieve for him today as I have done every day since his death. I am working hard at this grieving thing. It is exhausting work. I should not wonder why I am tired all the time. The longing I feel for my son is not something I can well put into words. I want to see Nick's face, see his smile, hold his hand and feel it's warmth, and hear his voice say, "I love you Mom." I know I am not going to get what I want.

“Prayer is not asking. It is a longing of the soul. It is daily admission of one's weakness. It is better in prayer to have a heart without words than words without a heart.” Mahatma Gandhi

“There is no past that we can bring back by longing for it. There is only an eternally new now that builds and creates itself out of the Best as the past withdraws.” Johann Wolfgang von Goethe

Radiation Sickness

2010-03-25T01:10:00.005-04:00

As the days of March tick off the calender, I find myself falling farther down the rabbit hole of my own depravity. I am reliving the days past with sadness and regret, fear and anxiety and a longing for my son that will not cease. This picture only begins to touch on the reality that Nick was living as he remained in the hospital, now only day #17 of 58! Still very ill, fighting off leukemia cells in his brain and spinal fluid, fighting off infection with counts that had plummeted way too low and fighting the side effects of his radiation treatments, just to name of few!

On March 25th of last year, Nick was getting his seventh of thirteen radiation treatments. Radiation to this area is already difficult enough, but, Nick had to also deal with the additional burden of his failing lungs. I don't know how he did it, but, he did! Nick was so brave and such a trooper when it came to these barbaric methods of ridding the body of cancer. On top of everything else, the radiation was rough. On this particular day, the infamous "look" was in evidence and yet, people would still try to tell me he looked "good." You will notice the oxygen mask hanging from his neck. I can't remember why he had it off. He might have pulled it down because I was taking a picture. Last year, as Nick was going through all this, I never posted the "real" pictures that I had taken. I know Nick read my blog sometimes and I didn't think he would want me to put them up. Now I have no such worries or constraints. So harsh reality it will be. These are the images I cannot get out of my head. These are the thoughts that make me cry every day for one reason or another.

Today I decided to make one more attempt to do something with all the insulin Nick had not used. We had just had a new prescription filled, brought the stuff home, and NEVER used it! Never opened it! Nick went into the hospital the very next day! I called the Hopkins pharmacy to see if they could at least take the small individual needles back. They said they cannot. I understand this, but, it just kills me to throw all this stuff away. So I took out all ten of the insulin syringes and squirted out all the insulin. I thought about the waste of good medicine and the expense and then I thought about my poor boy and I just cried some more. The pain is raw and there is no medicine to fix this broken heart. The pain of missing my boy just grabs hold and pulls me down. I am powerless to keep it at bay and it saps me of all my strength.

Bystander

Battered and bruised you trudged through each day.
Sticking yourself with needles in the name of healing.
Having others stick needles into you and take your
precious life's blood from your body.
Tired and battle-weary, you fought on with endless courage.
You trusted them to heal you, to take care of you.
You let them irradiate your brain,
thinking you would be cured of this disease.
Poisons were poured into your system.
We prayed for the toxic concoction to find the right enemy;
instead, this dreaded chemical cocktail turned on you and ate you alive.
Every assault was borne with quiet dignity and reserve.
Your beautiful soul was the only thing they couldn't butcher
with their instruments of destruction and death.

I love you my sweet son. I have not yet learned how to live without your physical presence in my life. I still do not understand why this had to happen. I am lost without you in my life. Please come home Nick, our hearts are breaking every day. I love you always and forever, Mom

Ava H: Pink Princess, Inspirational Angel, Neuroblastoma Warrior

2010-03-22T01:46:00.001-04:00

This is little Ava. She has been battling neuroblastoma since February of 2009. She relapsed this past December and is now fighting another round against this horrible childhood cancer. Please send your prayers for little Ava and her family. I believe the little guy in the video is Ava's brother Eli. They are so adorable. They remind me of Nick and Sara when they were little. In addition to more chemo and other treatments, Ava will have to have another surgery in a few weeks. She is an inspirational angel for sure!

Standing On the Edge

2010-03-20T02:17:00.004-04:00

As I travel through the blogosphere, I discover others who travel the same road. They too have lost their precious children. They share their pain as they try to find their way. The article below is reprinted here with permission from the author, Mr. John French. He lost his seventeen year old son, Brandon, on July 30th, 2009. Mr. French is a grieving father and his words speak so eloquently to the pain of losing a child.

Taking a Rest on the Journey through Grief by John French

Grief is an incredibly difficult venture, a monumental climb from the pit of despair. It is certainly an exhausting journey. It’s a journey in which now, months after the death of my child, I realize that I haven’t moved at all.

Even though others may perceive me to be progressing, my movement is lateral at best. As the span of time increases, it becomes more and more difficult to lift myself up. The days slip by, but the moments never escape me. The more I struggle to hold on, the more twisted and frayed my thoughts become. There is a fear attached to moving forward, as if continuing on diminishes the importance of where we have been. Exceeding that is a heightened awareness that there is no going back. It is in these moments that I feel completely stranded. I wander back and forth on contemplation’s narrow shelf.

On one hand nothing exceeds the sheer agony of death; on the other, absence creates a tremendous depression. As I struggle to unravel the endless strands of thought that death has me spinning, it occurs to me that there is some stability in the place in which I stand.
I’m on an outcropping of complacency between the height of anguish and the depths of sorrow.

With space enough to linger, to contemplate, commiserate and catch my breath, I sort through my feelings. I find myself discarding unnecessary thoughts and reflecting on the little things that always make me smile. Flickers from the past ignite memories that produces a warm inner glow. And, even though the future is unfolding, within this space, it does not obstruct my view.

I think there are instances when it’s best to stay focused on where you are. The enormity of what lies ahead is too overwhelming and looking back will only bring you down. Considering how much we have already suffered, a break is certainly something we are due. Pausing doesn’t restore my motivation to pursue life’s summit, but it keeps me from going over the edge.

To avoid seeming as though I am overlooking the point of our sadness, I’ve decided to extend myself, and offer a line that is purposely crafted to be uplifting. I do this not only to reach out to others, but so I might feel secure within the space I’ve found to rest.

“The lariat of love is so immeasurable that it easily extends from earth into heaven. So unbreakable that it binds them together. If we gather the strength to draw our selves a little closer, we will see those on the other side are pulling for us."

***************************************************

I am wondering how long one can live on an "outcropping of complacency" and what kind of life that would be? This was not the life I signed up for, but, now, this is the life I've got. Grief counselors will caution those grieving to live in the present in hopes of keeping the bereaved from becoming overwhelmed with an uncertain future. The problem is my future, my hopes and my dreams, died with my son. Right now it feels like this narrow shelf is all I have.

A Stony Path

2010-03-17T12:19:00.005-04:00

If God sends you down a stony path,
may he give you strong shoes.

Last year, we spent St. Patrick's day in the hospital. Today would be Day 9/58! Nick's breathing continued to be an issue, so much so that we were worried that he would be able to tolerate lying face down in the radiation mask. Well Nick was determined and he said he could do it. So, Nick started his first cranio-spinal radiation treatment on this date one year ago. Looking back, I think we were all completely unaware that it was St. Patrick's Day, so deep were we into the unknown and the fear that this stony path would lead us nowhere we wanted to be. It seems like just yesterday that Nick and all of us were living that nightmare.

Dear Lord,
Give me a few friends who will love me for what I am,
and keep ever burning before my vagrant steps the kindly light of hope...
And though I come not within sight of the castle of my dreams,
teach me to be thankful for life
and for time's olden memories that are good and sweet.
And may the evening's twilight find me gentle still.

If I Could Go Back

2010-03-13T22:50:00.006-05:00

Here is my sweet Nick with all of his crazy hair! This will be in stark contrast to his bald "cancer" head that will be shown here in weeks to come. In case anyone forgot, Nick was still in the hospital on this date in time last year. He was on Day #5 of 58 inpatient days! These five days were spent in fear and anxiety every day about the radiation treatments that were on hold due to all the breathing and lung problems Nick was having. I cannot begin to describe the awful, nauseating fear! This was actually the same day that I decided to spend the night with Nick for the first time because I was so frightened about his breathing status. He was still in the room in the back hallway and he was still being assigned the least experienced nurses on the floor. I feel the need to put down all that was going on with him, but, I won't because I feel there is no purpose. I know how horrible it was, I know how hard Nick was working for every breath. I know how indifferent the doctors seemed to be about the whole thing. God why did this have to be this way? Why do I keep rehashing all this you may ask? Because I have to...that's all. I have to find a way to go over until I don't need to go over it anymore. I have to be able to figure out why our wonderful Nick had to die this way. I somehow know I will never have an answer and yet I must endlessly torture myself. God help me. But, I will feel this pain until it doesn't hurt so much anymore. It will never go away. How could it? I am not stupid. I know what I know and I feel what I feel. The problem is I am trying to get YOU to understand what Nick went through, what I went through, what we all went through. Can you understand? Can you try? If you want to try you have to feel the pain! This is what I feel everyday. Am I cruel to want others to understand the agony of this suffering? Why do I feel so alone in this loss? What is the purpose of this suffering?

Today marks seven months since Nickolas has left us. Every day I stand in Nick's room and I look at his pictures and I cry. I play his music for him and hug his clothes. The other day I wrote this on Nick's dry erase board:

Nice and neat Nannerpus
Incredible and intelligent
Caring and cool
Krazy and kind
Ornery, yet overflowing with hugs and love
Loving, laid-back, and loyal
Awesome and admirable
Sweet, sincere, & stubborn

We love you Nick. We miss your beautiful spirit, your smile, and the joy you brought to our lives every day. We love you so much...Mom, Dad & Sara.

"I think I am beginning to understand why grief feels so much like suspense. It comes from the frustration of so many impulses that have become habitual...I keep on through habit fitting an arrow to the string; then I remember and have to lay the bow down." ~C.S. Lewis

"Healing moves at its own pace. What is a burden one day may be a gift another day."
Excerpted from the book, "Healing After Loss Daily Meditations for Working Through Grief" authored by Martha Whitmore Hickman

Super Pierce

2010-03-12T14:45:00.001-05:00

I hope Nick is hanging out with little Pierce. I can see the two of them now running with the wind in their Superman capes.

Take good care of all the little angels coming your way Nick. I hope they make you smile every day. I love you always Mom.

The Beginning of the End

2010-03-09T01:53:00.004-05:00

On this date last year, Nick was readmitted to the hospital. Nick had not been feeling well for quite some time. We had gotten word the month before that the leukemia cells were back in his spinal fluid and Nick had been getting stronger chemo into his spinal fluid for the past month or so. Just prior to this admission, the doctors told Nick that they wanted him to undergo radiation treatments to his head and spine. Our hearts were heavy at the thought of this treatment and all the potential bad side effects. Nick felt strongly that he wanted to do whatever he had to do to clear the leukemia out of his body. All these decisions were being made not knowing that his lungs were already falling apart.

In the meanwhile, due to the chemo treatments, Nick's counts had fallen and were refusing to come up. His counts were so low and yet no one seemed concerned or alarmed; whereas in the past, counts this low would have been cause for hospitalization due to infection concerns. Nick continued to have problems with his breathing. His heart rate and respiratory rate were elevated for weeks by this point. He was losing weight, his appetite was down and he was tired and fatigued all the time. Why did no one see this as a problem? Why couldn't anyone put all the puzzle pieces together?

Nick was admitted to a low risk room near the back of the unit. They didn't think he was very sick. They were wrong again. His breathing was very labored and it was on his admission vital signs that it was discovered that his oxygen saturation was way down below normal. At this point Nick was placed on oxygen, yet again, no one was too alarmed about this. There was just nothing. And so began the first of two horrible and long admissions. This one would last for fifty-eight days! Fifty-eight days on a downward spiral to the hell that would be the end of Nick's precious life. Back then we still had hope. Back then I thought I could protect my son. Back then, we had no idea of what was to come. Back then, we still believed in miracles.

"Keep a green tree in your heart and perhaps a singing bird will come" ~Chinese Proverb

Dreams of Loss

2010-03-08T00:42:00.002-05:00

The problem with my dreams is that I don't remember them. I woke up this morning and half realized that I was dreaming about Nick. It wasn't what I would consider a "good" dream. Nick was very sick, his body emaciated and his spirit lost. I just remember trying to carry him somewhere and there was this sense of urgency about getting him somewhere safe. And then all I had in my arms was his box of ashes. And when I woke I was confused about what I dreamed and what it all meant. And I was sad, feeling that I was trying to somehow save him when there was no hope and I was just continuing his suffering. I miss my sweet son.

Still Swimming

2010-03-04T03:11:00.004-05:00

Glenn & I went to see Andrew McMahon (Jack's Mannequin) last night. The concert was wonderful. Andrew is an amazing performer and leukemia/BMT survivor! He sang this acoustic version of his song "Swim." The music on this video is great, but, I wish it was closer to Andrew, because his words are heartfelt and coming from a place deep in his soul. When Glenn & I heard him sing this song at the concert, we both cried. I couldn't help but wonder why not Nickolas? Why couldn't he be here too? Why couldn't he have beaten his leukemia just like Andrew? Now we are stuck with all the swimming and choking!

Matthew West - Save A Place For Me

2010-02-27T02:09:00.001-05:00

I love you Nick. I will be there soon. Mom

Tears In The Ocean, Footprints In The Sand

2010-02-23T00:03:00.004-05:00

I remember when Nick was born one of the first things we noticed was his BIG feet. They were still adorable baby feet, but, he was a big 8lb. 11oz, three weeks overdue, boy, with big feet. When he was a baby, I loved to play with his toes and tickle his feet, as all mothers do. I remember playing "this little piggy" with him and how he would laugh when it came time for the piggy to go "Wee wee wee all the way home." Nick had the misfortune to inherit his Mama's crooked fourth toe and he had the longest toes of anyone in the family. Those toes were like fingers and while those toes were often the brunt of many a joke, they were world renown in his circle of close friends. Nick had huge feet, size 13! His favorite Birkenstock sandals and his tennis shoes still sit up in his room. I remember one time in the hospital, Nick had gone off the floor for a test. I was worried and then a stretcher came rolling around the corner. The first thing I saw were Nick's big old feet (with his Birkenstocks on them) hanging off the end of the stretcher (Nick was so tall, he never quite fit on the stretchers) and I knew immediately who those big feet belonged to and I laughed as I breathed a sigh of relief that he was back to his room, safe and sound.

As I continue to fight my way through this grief, I am always searching for ways to keep Nick close to me. Anything I find that has his name, his handwriting, his voice, they all bring me a small measure of comfort in this barren wasteland of loss. I don't know why it didn't occur to me earlier, but, I suddenly realized that I had to have Nick's baby footprints. I called St. Joseph's Hospital where Nickolas was born and they told me what I had to do in order to request his birth records, which would have the copy of his precious footprints. The next day I had to call the hospital back to confirm some information and the person on the phone asked me what year Nick was born. I told the lady that Nick was born in 1982. She then proceeded to tell me that they only keep records for twenty-five years and that Nick's birth records had been destroyed! I could not believe it. I had no idea they could even do that. I hung up the phone and just began sobbing. Why? Why couldn't those footprints have just been there? It doesn't seem like such a big thing...but right now, to me, the copy of those little feet mean everything. I am so heart sick over this. I love you my sweet boy. Please come home.

"I dropped a tear in the ocean. The day you find it is the day I will stop missing you."

Quiet In My Town

2010-02-19T02:02:00.005-05:00

Where are you my son?
Can you see the light?
I keep it burning just for you.
Can you find your way back to us?
We miss you so.
Nothing is the same without your loving presence in our lives.
In the quiet of the night my heart feels the pain.
Can you hear me cry?
I pray you are happy in the far, far away.
Can you feel the love we are sending you?
Please come home and sit with me for a while.
I love you always and forever, my sweet sweet boy.
Mom

"Love must be as much a light, as it is a flame."
~Henry David Thoreau

"Today I heard the sound of birds and I wish that I was anywhere but here...." ~Civil Twilight

In This Wild Place

2010-02-13T00:44:00.005-05:00

Has it been six months?
It seems like less.
It feels like more.
I lack energy to care
I miss you so.
I would sell my soul for one more glimpse of you.

I love you more than a wagon full of puppies.
Please come home my sweet boy. Mom

Storm the Hill 2010: Make Your Mark

2010-02-10T01:02:00.001-05:00

Please take a moment to check out the IAVA's Storm The Hill video and site. The Iraq and Afghanistan Veterans of America organization is doing great work to make sure veterans are seen and heard. They will be in Washington DC all this week speaking with Congressman and Senators on the "hill" in an effort to keep lines of communication open and make sure that the the issues concerning our returning vets are being addressed. I hope everyone will take a moment to check it out and figure out how you can help!

Writing About Trees

2010-02-07T18:02:00.009-05:00

I frequently tramped eight or ten miles through the deepest snow to keep an appointment with a beech-tree, or a yellow birch, or an old acquaintance among the pines.
~Henry David Thoreau

My dear sweet son, how I wish you were here with us to see all the snow. How I wish you could be here snowed in with your family. How I wished so desperately for you to remain here with us on earth. How I wish I never had to have a conversation with you about where and how you wanted to be buried. How I wish I could take that pain from my mother's heart. How I wish I could hold you in my arms and tell you that everything was going to be alright and you would be able to breath again! How I wish that things had turned out differently for you and thus for all of us who love you so and are grieving so hard for you every day. How I wish that just one person had looked a little harder at you and saw the things that I did. How would things be changed? How will I ever learn to live my life without you?

When I look back on last year at this time, all I can remember is how sick Nick was all the time. It breaks my heart to read my notes on his cough, his lungs, his "blasts" back in the CNS despite the IT chemo, the constant battle to get someone to tell me why Nick was feeling so poorly almost five months post transplant.

After Nick's discharge from his Xmas/New Year's admission of January 2009, Nick was being seen in the clinic for his treatments. The "clinic" is not where you want to be unless you are well on the road to recovery. For Nick this was not the case and for some reason Nick's condition just kept going in the wrong direction. The issue is that no one seemed to be paying attention to the subtle changes that were happening. No one was doing a physical or taking a history. No one was taking the time to sit down and actually make an assessment. No was actually looking at the VS that were written down on a piece of paper and entered into a computer with each clinic visit. No one was listening to a distraught mother and excellent nurse who put all this information right in front of their noses and still no one listened, no one took heed, no red flags went up, nothing.

The signs were all there and they were plentiful. The problem was no one was reading them. No one really took the time to get to know Nick in that clinic so Nick became a number. Nick fell through the cracks of a system overloaded with patients. A system with not enough nurses and not enough attention to detail. A system full of very sick patients with no one to listen to their concerns or pay attention to their problems. In Nick's case, attention to fine detail was needed, Nick did not get that attention and now he is forever gone from my life.

I want someone at Johns Hopkins to take responsibility for this flawed system. I want people to understand the pain they have caused me, my family, and so many who loved Nick. I want them to live up to their own publicity!

Welcome to The Johns Hopkins Hospital

"From the moment you arrive at Johns Hopkins, you become part of a long tradition of distinguished health care. Since our doors opened more than a century ago, our mission has been excellence. We strive to lead the world in the diagnosis and treatment of disease and to train tomorrow's great physicians, nurses and scientists. Above all, we aim to provide the highest quality health care and service to all of our patients.

Our commitment to excellence shows. We continually make news, introducing new therapies and furthering medical discovery. We know, however, that good care involves more than good medicine. That's why our concern for you extends to every aspect of your stay. We want your experience at Johns Hopkins to be as pleasant and as comfortable as possible. "

Does "comfortable as possible" include spending the rest of your life buried beneath a tree?

Because no one medical person chose to "see" my wonderful son, I will never see him again. Nick's future and mine as his Mom are forever gone. My life is forever altered. Now I find myself writing about grief, writing about mourning for a child lost, writing about trees.

And see the peaceful trees extend their myriad leaves in leisured dance-
they bear the weight of sky and cloud upon the fountain of their veins. ~Kathleen Raine

A man is a bundle of relations, a knot of roots, whose flower and fruitage is the world.
~Ralph Waldo Emerson

Always My Babies

2010-02-04T02:58:00.005-05:00

My babies...I love them so, even with those crazy ass hats.

Wanna pack your bags, Something small
Take what you need and we disappear
Without a trace we'll be gone, gone
The moon and the stars can follow the car
and then when we get to the ocean
We gonna take a boat to the end of the world
All the way to the end of the world

Oh, and when the kids are old enough
We're gonna teach them to fly!

I love you my sweet boy I miss you so. Please come home and see you Mama. We taught you how to fly, didn't we Nick? Breathe easy my son.

Brayton's tricks

2010-02-01T12:24:00.001-05:00

This is little Brayton. He makes me smile. He is battling Hemophagocytic lymphohistiocytosis (HLH), a rare disorder of the immune system that is treated like cancer with chemotherapy and bone marrow transplant. Brayton has already had a BMT and is still battling the many complications that come with his disorder and the BMT. Please pray for him. You can check out his Caring Bridge page at http://www.caringbridge.org/visit/braytonmartin