Pedaling Hard

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

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

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

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

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

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

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

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

A Poem, a Bicycle, a Bird

by Naomi Shihab Nye

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

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

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

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

Visions of Sugar Plums

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

FOUR MONTHS SINCE BONE MARROW TRANSPLANT!!!!

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

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

Who Cares?

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

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

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