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

Vortex of Grief

Every day of Nick's radiation treatments seemed endless. The worry list was endless. Would they get the dosing right? Would everything line up right? Would Nick's breathing be able to handle being strapped into that torture device for however long it would take on this day? How would he feel when he was done? How long would the mucositis in his mouth prevent him from eating? How much more weight would he lose? And the ultimate question, would it work? This is a poem I wrote one day while I sat in the basement of the Weinberg building. There is a waiting room there for family members and patients awaiting treatment. Many of the patients were there as outpatients and they had to change into a hospital gown and wait for their turn to be blasted. It was so sad and scary to sit there waiting for Nick to come forth from that horrible cave of darkness.

Untitled

Half clothed warriors
Fighting an unseen foe
Waiting to do battle
Suiting up in their armor and masks.

Lines of black and green traverse the skin,
As if the coloring book of a mad scientist or
Some child gone wild with magic markers.

Faces about the waiting room staring at one another
For understanding and support.
Some are hopeful with cautious optimism
Others are more battle weary and resigned to
The futility of it all.

The sign reads, "CAUTION"
"HIGH RADIATION AREA."
All who pass through these gates beware.
Your death or your salvation await you.

Enter the arena, armed with nothing more
Than free will and the desire to beat back
The enemy as it tries to envelope your soul.

Place yourself prone on the table, vulnerable
And alone. Your face pressed into the
Honeycomb mold that will hold you captive
For the duration of this round.

What is it like to see the "light" of the gamma rays
As they seek and destroy all that lie in their path?
Will all leukemia cells please report immediately
To hell's kitchen! Your table is about to be seated.

The fear is always there. What if this doesn't work?
What other dangers will now be lurking?
When will the side effects begin?
Waiting, wondering, preparing again.

Baby fine hair so carefully cultivated, soon to disappear.
A patchy reminder of things we would rather forget.
Gains so valiantly achieved blown over
like a tree in the eye of a hurricane.
No match for these photon forces.


Spiraling downward.
There is no end to the painful memories.
The warmth of spring does not reach to my heart.
I want my boy back.
Do you hear me? I WANT MY BOY BACK!!!!
Angry and saddened by the futility of this longing.
No answers to be found.
Spinning endlessly in this vortex of grief.

Longing of the Soul

This is my poor sweet boy with his "Woodstock" hair, trying to rest after his radiation treatments had started. I don't remember what specific day it was, but, I am pretty sure it was near the end of March 2009. His hair had started to fall out again due to all the radiation, leaving him with his little Woodstock poofies. Nick hadn't yet decided to shave it all off, that would come later in this admission.

On this date last year, Nick was still in Room 1 on 5B. It was the weekend and I showed up later in the afternoon with Aunt Barbara to find everyone gathered in Nick's room. Nick had gone into a breathing fit after a trip to the bathroom and they had to call the nurse and doctor to his room because he couldn't breathe! This was not the first episode breathing difficulty nor would it be the last. I remember the horrible feeling in the pit of my stomach when I showed up "late" for the first time since Nick had been admitted to find things going down the dumper. The doctor wanted to get some blood to check Nick's breathing numbers, but, I think he was so anxious and scared he didn't want them to draw it right then. Plus this test is painful; they have to stick a needle straight into your wrist while trying to find the radial artery which is like the size of a piece of thread. Nick was coughing and coughing and he couldn't catch his breath. The effort of Nick just trying to walk to the bathroom was all it took to send him into significant respiratory distress. And yet, throughout this admission and the months prior to it, the general reaction seemed to be..."Is this a problem?" Well this time, it must have been pretty bad, because everyone came a running and they couldn't blame it on me, cause I WASN'T EVEN THERE!!!! When I did arrive, I had no idea what had happened. It was very scary. They had to take Nick off his cannula and put him back on his high flow face mask at a much higher oxygen level. After some time had passed, Nick was able to catch his breath and settle down a little bit. I believe at this point we were already using the fan to blow on Nick to try and help him relax and cool down. I can't remember everything, I just remember how horrible it felt, the sheer terror of watching Nickolas go through all this and how awful it felt to be powerless to help him. To watch someone you love, let alone your child, go through this kind of suffering, well I can't begin to describe how much that hurts in my heart every day.

On that day, we did our best to push our fears to the back of our minds. We kept asking questions, we kept challenging the doctors to figure out what the hell was going on with Nick and his breathing. No one seemed to understand the severity of his lung damage at this point and they certainly did not know why. This was not their focus. They were focused on the leukemia and the radiation and looking for infections that were debated by their own infectious disease doctors. For us, there was nothing to do but keep pushing onward. I can remember this time like it was yesterday...all of it! This was about the time that Dr. Gallstone (formerly known as Dr. ??) showed up and made things even worse with his arrogant, supercilious and pompous attitude. Why did we have to deal with those kind of people when Nick was so sick and hurting so much? What lesson was I supposed to learn from that experience? I just don't even know what to say sometimes about all Nick went through at the hands of these punks! Definition of punk: a disrespectful, rude, or otherwise unpleasant person! (Now I don't throw all of the people at the Hop into this category...just a select few!) However, when someones life is hanging in the balance you shouldn't have to deal with any punks! As Glenn just threw in..."Life should be punk free!"

I miss my sweet boy with all of my heart and soul. I grieve for him today as I have done every day since his death. I am working hard at this grieving thing. It is exhausting work. I should not wonder why I am tired all the time. The longing I feel for my son is not something I can well put into words. I want to see Nick's face, see his smile, hold his hand and feel it's warmth, and hear his voice say, "I love you Mom." I know I am not going to get what I want.

“Prayer is not asking. It is a longing of the soul. It is daily admission of one's weakness. It is better in prayer to have a heart without words than words without a heart.” Mahatma Gandhi

“There is no past that we can bring back by longing for it. There is only an eternally new now that builds and creates itself out of the Best as the past withdraws.” Johann Wolfgang von Goethe

Radiation Sickness

As the days of March tick off the calender, I find myself falling farther down the rabbit hole of my own depravity. I am reliving the days past with sadness and regret, fear and anxiety and a longing for my son that will not cease. This picture only begins to touch on the reality that Nick was living as he remained in the hospital, now only day #17 of 58! Still very ill, fighting off leukemia cells in his brain and spinal fluid, fighting off infection with counts that had plummeted way too low and fighting the side effects of his radiation treatments, just to name of few!

On March 25th of last year, Nick was getting his seventh of thirteen radiation treatments. Radiation to this area is already difficult enough, but, Nick had to also deal with the additional burden of his failing lungs. I don't know how he did it, but, he did! Nick was so brave and such a trooper when it came to these barbaric methods of ridding the body of cancer. On top of everything else, the radiation was rough. On this particular day, the infamous "look" was in evidence and yet, people would still try to tell me he looked "good." You will notice the oxygen mask hanging from his neck. I can't remember why he had it off. He might have pulled it down because I was taking a picture. Last year, as Nick was going through all this, I never posted the "real" pictures that I had taken. I know Nick read my blog sometimes and I didn't think he would want me to put them up. Now I have no such worries or constraints. So harsh reality it will be. These are the images I cannot get out of my head. These are the thoughts that make me cry every day for one reason or another.

Today I decided to make one more attempt to do something with all the insulin Nick had not used. We had just had a new prescription filled, brought the stuff home, and NEVER used it! Never opened it! Nick went into the hospital the very next day! I called the Hopkins pharmacy to see if they could at least take the small individual needles back. They said they cannot. I understand this, but, it just kills me to throw all this stuff away. So I took out all ten of the insulin syringes and squirted out all the insulin. I thought about the waste of good medicine and the expense and then I thought about my poor boy and I just cried some more. The pain is raw and there is no medicine to fix this broken heart. The pain of missing my boy just grabs hold and pulls me down. I am powerless to keep it at bay and it saps me of all my strength.

Bystander

Battered and bruised you trudged through each day.
Sticking yourself with needles in the name of healing.
Having others stick needles into you and take your
precious life's blood from your body.
Tired and battle-weary, you fought on with endless courage.
You trusted them to heal you, to take care of you.
You let them irradiate your brain,
thinking you would be cured of this disease.
Poisons were poured into your system.
We prayed for the toxic concoction to find the right enemy;
instead, this dreaded chemical cocktail turned on you and ate you alive.
Every assault was borne with quiet dignity and reserve.
Your beautiful soul was the only thing they couldn't butcher
with their instruments of destruction and death.

I love you my sweet son. I have not yet learned how to live without your physical presence in my life. I still do not understand why this had to happen. I am lost without you in my life. Please come home Nick, our hearts are breaking every day. I love you always and forever, Mom

Ava H: Pink Princess, Inspirational Angel, Neuroblastoma Warrior

This is little Ava. She has been battling neuroblastoma since February of 2009. She relapsed this past December and is now fighting another round against this horrible childhood cancer. Please send your prayers for little Ava and her family. I believe the little guy in the video is Ava's brother Eli. They are so adorable. They remind me of Nick and Sara when they were little. In addition to more chemo and other treatments, Ava will have to have another surgery in a few weeks. She is an inspirational angel for sure!

Standing On the Edge

As I travel through the blogosphere, I discover others who travel the same road. They too have lost their precious children. They share their pain as they try to find their way. The article below is reprinted here with permission from the author, Mr. John French. He lost his seventeen year old son, Brandon, on July 30th, 2009. Mr. French is a grieving father and his words speak so eloquently to the pain of losing a child.

Taking a Rest on the Journey through Grief by John French

Grief is an incredibly difficult venture, a monumental climb from the pit of despair. It is certainly an exhausting journey. It’s a journey in which now, months after the death of my child, I realize that I haven’t moved at all.

Even though others may perceive me to be progressing, my movement is lateral at best. As the span of time increases, it becomes more and more difficult to lift myself up. The days slip by, but the moments never escape me. The more I struggle to hold on, the more twisted and frayed my thoughts become. There is a fear attached to moving forward, as if continuing on diminishes the importance of where we have been. Exceeding that is a heightened awareness that there is no going back. It is in these moments that I feel completely stranded. I wander back and forth on contemplation’s narrow shelf.

On one hand nothing exceeds the sheer agony of death; on the other, absence creates a tremendous depression. As I struggle to unravel the endless strands of thought that death has me spinning, it occurs to me that there is some stability in the place in which I stand.
I’m on an outcropping of complacency between the height of anguish and the depths of sorrow.

With space enough to linger, to contemplate, commiserate and catch my breath, I sort through my feelings. I find myself discarding unnecessary thoughts and reflecting on the little things that always make me smile. Flickers from the past ignite memories that produces a warm inner glow. And, even though the future is unfolding, within this space, it does not obstruct my view.

I think there are instances when it’s best to stay focused on where you are. The enormity of what lies ahead is too overwhelming and looking back will only bring you down. Considering how much we have already suffered, a break is certainly something we are due. Pausing doesn’t restore my motivation to pursue life’s summit, but it keeps me from going over the edge.

To avoid seeming as though I am overlooking the point of our sadness, I’ve decided to extend myself, and offer a line that is purposely crafted to be uplifting. I do this not only to reach out to others, but so I might feel secure within the space I’ve found to rest.

“The lariat of love is so immeasurable that it easily extends from earth into heaven. So unbreakable that it binds them together. If we gather the strength to draw our selves a little closer, we will see those on the other side are pulling for us."

***************************************************

I am wondering how long one can live on an "outcropping of complacency" and what kind of life that would be? This was not the life I signed up for, but, now, this is the life I've got. Grief counselors will caution those grieving to live in the present in hopes of keeping the bereaved from becoming overwhelmed with an uncertain future. The problem is my future, my hopes and my dreams, died with my son. Right now it feels like this narrow shelf is all I have.

A Stony Path

If God sends you down a stony path,
may he give you strong shoes.

Last year, we spent St. Patrick's day in the hospital. Today would be Day 9/58! Nick's breathing continued to be an issue, so much so that we were worried that he would be able to tolerate lying face down in the radiation mask. Well Nick was determined and he said he could do it. So, Nick started his first cranio-spinal radiation treatment on this date one year ago. Looking back, I think we were all completely unaware that it was St. Patrick's Day, so deep were we into the unknown and the fear that this stony path would lead us nowhere we wanted to be. It seems like just yesterday that Nick and all of us were living that nightmare.

Dear Lord,
Give me a few friends who will love me for what I am,
and keep ever burning before my vagrant steps the kindly light of hope...
And though I come not within sight of the castle of my dreams,
teach me to be thankful for life
and for time's olden memories that are good and sweet.
And may the evening's twilight find me gentle still.

If I Could Go Back

Here is my sweet Nick with all of his crazy hair! This will be in stark contrast to his bald "cancer" head that will be shown here in weeks to come. In case anyone forgot, Nick was still in the hospital on this date in time last year. He was on Day #5 of 58 inpatient days! These five days were spent in fear and anxiety every day about the radiation treatments that were on hold due to all the breathing and lung problems Nick was having. I cannot begin to describe the awful, nauseating fear! This was actually the same day that I decided to spend the night with Nick for the first time because I was so frightened about his breathing status. He was still in the room in the back hallway and he was still being assigned the least experienced nurses on the floor. I feel the need to put down all that was going on with him, but, I won't because I feel there is no purpose. I know how horrible it was, I know how hard Nick was working for every breath. I know how indifferent the doctors seemed to be about the whole thing. God why did this have to be this way? Why do I keep rehashing all this you may ask? Because I have to...that's all. I have to find a way to go over until I don't need to go over it anymore. I have to be able to figure out why our wonderful Nick had to die this way. I somehow know I will never have an answer and yet I must endlessly torture myself. God help me. But, I will feel this pain until it doesn't hurt so much anymore. It will never go away. How could it? I am not stupid. I know what I know and I feel what I feel. The problem is I am trying to get YOU to understand what Nick went through, what I went through, what we all went through. Can you understand? Can you try? If you want to try you have to feel the pain! This is what I feel everyday. Am I cruel to want others to understand the agony of this suffering? Why do I feel so alone in this loss? What is the purpose of this suffering?

Today marks seven months since Nickolas has left us. Every day I stand in Nick's room and I look at his pictures and I cry. I play his music for him and hug his clothes. The other day I wrote this on Nick's dry erase board:

Nice and neat Nannerpus
Incredible and intelligent
Caring and cool
Krazy and kind
Ornery, yet overflowing with hugs and love
Loving, laid-back, and loyal
Awesome and admirable
Sweet, sincere, & stubborn

We love you Nick. We miss your beautiful spirit, your smile, and the joy you brought to our lives every day. We love you so much...Mom, Dad & Sara.

"I think I am beginning to understand why grief feels so much like suspense. It comes from the frustration of so many impulses that have become habitual...I keep on through habit fitting an arrow to the string; then I remember and have to lay the bow down." ~C.S. Lewis

"Healing moves at its own pace. What is a burden one day may be a gift another day."
Excerpted from the book, "Healing After Loss Daily Meditations for Working Through Grief" authored by Martha Whitmore Hickman

Super Pierce

I hope Nick is hanging out with little Pierce. I can see the two of them now running with the wind in their Superman capes.

Take good care of all the little angels coming your way Nick. I hope they make you smile every day. I love you always Mom.

The Beginning of the End

On this date last year, Nick was readmitted to the hospital. Nick had not been feeling well for quite some time. We had gotten word the month before that the leukemia cells were back in his spinal fluid and Nick had been getting stronger chemo into his spinal fluid for the past month or so. Just prior to this admission, the doctors told Nick that they wanted him to undergo radiation treatments to his head and spine. Our hearts were heavy at the thought of this treatment and all the potential bad side effects. Nick felt strongly that he wanted to do whatever he had to do to clear the leukemia out of his body. All these decisions were being made not knowing that his lungs were already falling apart.

In the meanwhile, due to the chemo treatments, Nick's counts had fallen and were refusing to come up. His counts were so low and yet no one seemed concerned or alarmed; whereas in the past, counts this low would have been cause for hospitalization due to infection concerns. Nick continued to have problems with his breathing. His heart rate and respiratory rate were elevated for weeks by this point. He was losing weight, his appetite was down and he was tired and fatigued all the time. Why did no one see this as a problem? Why couldn't anyone put all the puzzle pieces together?

Nick was admitted to a low risk room near the back of the unit. They didn't think he was very sick. They were wrong again. His breathing was very labored and it was on his admission vital signs that it was discovered that his oxygen saturation was way down below normal. At this point Nick was placed on oxygen, yet again, no one was too alarmed about this. There was just nothing. And so began the first of two horrible and long admissions. This one would last for fifty-eight days! Fifty-eight days on a downward spiral to the hell that would be the end of Nick's precious life. Back then we still had hope. Back then I thought I could protect my son. Back then, we had no idea of what was to come. Back then, we still believed in miracles.

"Keep a green tree in your heart and perhaps a singing bird will come" ~Chinese Proverb