In Love Longing

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

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

Stage Fright

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

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

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'

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

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

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!!!

Lament: A Cry of Sorrow and Grief

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

No More Birthdays Dearest Son

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

#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

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

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

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

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

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

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

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

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

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

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

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

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

Little Flower

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!

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

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.