Everywhere I Go

Cardboard Dreams & A Box of Twine

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

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

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

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

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

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

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

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

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

© bigD 2011

I Am One Who Lost A Son

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

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

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

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

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

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

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

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

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

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

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

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

Listen To Your Mother

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

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