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.

How Sleep The Brave

Freedom Is Not Free

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

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

Hans Zimmer's "Stand Up To Cancer"

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

Flags In 2010

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

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

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

No May Flowers

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

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

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

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

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

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

Exp wheezing noted on RUL

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

3. Appetite good, but no weight gain.

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

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

6. Nick very pale. Not sure why!!

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

What's Behind and What's Before

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

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

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

Nika

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

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

Why Butterflies?

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

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

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

Fish & Whistle

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

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

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

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

Mother's Day

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

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

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

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

To My Son

Missing you with all my heart.

Out of time, we were

Torn apart.

Hard to know just where you are, and yet

Each night I see a star,

Reminds me you are always near, yet

Still I cry my sorrow's tears.

Dearest son, my life's sweet joy

Always you will be my boy.

Your Mom loves you.

Lost Hope

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

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

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

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

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

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

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

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

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

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

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

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

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

Madness of the Heart

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Hatred is the madness of the heart” Lord Byron