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

Had You Such A Loss

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

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

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

Like Yesterday

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

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

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

When The Morning Was Shining

I Saw From the Beach

by Thomas Moore

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

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

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

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

Scars Healing Wrong

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

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

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

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

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

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

One More Time With Feeling by Regina Spektor

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

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

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

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

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

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

This is why we fight

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

Secret Water

The Well of Grief

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

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

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

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

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

Good Eggs

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

Suffer

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













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

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

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