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

Dreams of Loss

The problem with my dreams is that I don't remember them. I woke up this morning and half realized that I was dreaming about Nick. It wasn't what I would consider a "good" dream. Nick was very sick, his body emaciated and his spirit lost. I just remember trying to carry him somewhere and there was this sense of urgency about getting him somewhere safe. And then all I had in my arms was his box of ashes. And when I woke I was confused about what I dreamed and what it all meant. And I was sad, feeling that I was trying to somehow save him when there was no hope and I was just continuing his suffering. I miss my sweet son.

Still Swimming

Matthew West - Save A Place For Me

I love you Nick. I will be there soon. Mom

Tears In The Ocean, Footprints In The Sand

I remember when Nick was born one of the first things we noticed was his BIG feet. They were still adorable baby feet, but, he was a big 8lb. 11oz, three weeks overdue, boy, with big feet. When he was a baby, I loved to play with his toes and tickle his feet, as all mothers do. I remember playing "this little piggy" with him and how he would laugh when it came time for the piggy to go "Wee wee wee all the way home." Nick had the misfortune to inherit his Mama's crooked fourth toe and he had the longest toes of anyone in the family. Those toes were like fingers and while those toes were often the brunt of many a joke, they were world renown in his circle of close friends. Nick had huge feet, size 13! His favorite Birkenstock sandals and his tennis shoes still sit up in his room. I remember one time in the hospital, Nick had gone off the floor for a test. I was worried and then a stretcher came rolling around the corner. The first thing I saw were Nick's big old feet (with his Birkenstocks on them) hanging off the end of the stretcher (Nick was so tall, he never quite fit on the stretchers) and I knew immediately who those big feet belonged to and I laughed as I breathed a sigh of relief that he was back to his room, safe and sound.

As I continue to fight my way through this grief, I am always searching for ways to keep Nick close to me. Anything I find that has his name, his handwriting, his voice, they all bring me a small measure of comfort in this barren wasteland of loss. I don't know why it didn't occur to me earlier, but, I suddenly realized that I had to have Nick's baby footprints. I called St. Joseph's Hospital where Nickolas was born and they told me what I had to do in order to request his birth records, which would have the copy of his precious footprints. The next day I had to call the hospital back to confirm some information and the person on the phone asked me what year Nick was born. I told the lady that Nick was born in 1982. She then proceeded to tell me that they only keep records for twenty-five years and that Nick's birth records had been destroyed! I could not believe it. I had no idea they could even do that. I hung up the phone and just began sobbing. Why? Why couldn't those footprints have just been there? It doesn't seem like such a big thing...but right now, to me, the copy of those little feet mean everything. I am so heart sick over this. I love you my sweet boy. Please come home.

"I dropped a tear in the ocean. The day you find it is the day I will stop missing you."

Quiet In My Town

Where are you my son?
Can you see the light?
I keep it burning just for you.
Can you find your way back to us?
We miss you so.
Nothing is the same without your loving presence in our lives.
In the quiet of the night my heart feels the pain.
Can you hear me cry?
I pray you are happy in the far, far away.
Can you feel the love we are sending you?
Please come home and sit with me for a while.
I love you always and forever, my sweet sweet boy.
Mom


"Love must be as much a light, as it is a flame."
~Henry David Thoreau

"Today I heard the sound of birds and I wish that I was anywhere but here...." ~Civil Twilight

In This Wild Place

Has it been six months?
It seems like less.
It feels like more.
I lack energy to care
I miss you so.
I would sell my soul for one more glimpse of you.

I love you more than a wagon full of puppies.
Please come home my sweet boy. Mom

Storm the Hill 2010: Make Your Mark

Please take a moment to check out the IAVA's Storm The Hill video and site. The Iraq and Afghanistan Veterans of America organization is doing great work to make sure veterans are seen and heard. They will be in Washington DC all this week speaking with Congressman and Senators on the "hill" in an effort to keep lines of communication open and make sure that the the issues concerning our returning vets are being addressed. I hope everyone will take a moment to check it out and figure out how you can help!

Writing About Trees

I frequently tramped eight or ten miles through the deepest snow to keep an appointment with a beech-tree, or a yellow birch, or an old acquaintance among the pines.
~Henry David Thoreau

My dear sweet son, how I wish you were here with us to see all the snow. How I wish you could be here snowed in with your family. How I wished so desperately for you to remain here with us on earth. How I wish I never had to have a conversation with you about where and how you wanted to be buried. How I wish I could take that pain from my mother's heart. How I wish I could hold you in my arms and tell you that everything was going to be alright and you would be able to breath again! How I wish that things had turned out differently for you and thus for all of us who love you so and are grieving so hard for you every day. How I wish that just one person had looked a little harder at you and saw the things that I did. How would things be changed? How will I ever learn to live my life without you?

When I look back on last year at this time, all I can remember is how sick Nick was all the time. It breaks my heart to read my notes on his cough, his lungs, his "blasts" back in the CNS despite the IT chemo, the constant battle to get someone to tell me why Nick was feeling so poorly almost five months post transplant.

After Nick's discharge from his Xmas/New Year's admission of January 2009, Nick was being seen in the clinic for his treatments. The "clinic" is not where you want to be unless you are well on the road to recovery. For Nick this was not the case and for some reason Nick's condition just kept going in the wrong direction. The issue is that no one seemed to be paying attention to the subtle changes that were happening. No one was doing a physical or taking a history. No one was taking the time to sit down and actually make an assessment. No was actually looking at the VS that were written down on a piece of paper and entered into a computer with each clinic visit. No one was listening to a distraught mother and excellent nurse who put all this information right in front of their noses and still no one listened, no one took heed, no red flags went up, nothing.

The signs were all there and they were plentiful. The problem was no one was reading them. No one really took the time to get to know Nick in that clinic so Nick became a number. Nick fell through the cracks of a system overloaded with patients. A system with not enough nurses and not enough attention to detail. A system full of very sick patients with no one to listen to their concerns or pay attention to their problems. In Nick's case, attention to fine detail was needed, Nick did not get that attention and now he is forever gone from my life.

I want someone at Johns Hopkins to take responsibility for this flawed system. I want people to understand the pain they have caused me, my family, and so many who loved Nick. I want them to live up to their own publicity!

Welcome to The Johns Hopkins Hospital

"From the moment you arrive at Johns Hopkins, you become part of a long tradition of distinguished health care. Since our doors opened more than a century ago, our mission has been excellence. We strive to lead the world in the diagnosis and treatment of disease and to train tomorrow's great physicians, nurses and scientists. Above all, we aim to provide the highest quality health care and service to all of our patients.

Our commitment to excellence shows. We continually make news, introducing new therapies and furthering medical discovery. We know, however, that good care involves more than good medicine. That's why our concern for you extends to every aspect of your stay. We want your experience at Johns Hopkins to be as pleasant and as comfortable as possible. "

Does "comfortable as possible" include spending the rest of your life buried beneath a tree?

Because no one medical person chose to "see" my wonderful son, I will never see him again. Nick's future and mine as his Mom are forever gone. My life is forever altered. Now I find myself writing about grief, writing about mourning for a child lost, writing about trees.

And see the peaceful trees extend their myriad leaves in leisured dance-
they bear the weight of sky and cloud upon the fountain of their veins. ~Kathleen Raine

A man is a bundle of relations, a knot of roots, whose flower and fruitage is the world.
~Ralph Waldo Emerson

Always My Babies

My babies...I love them so, even with those crazy ass hats.

Wanna pack your bags, Something small
Take what you need and we disappear
Without a trace we'll be gone, gone
The moon and the stars can follow the car
and then when we get to the ocean
We gonna take a boat to the end of the world
All the way to the end of the world

Oh, and when the kids are old enough
We're gonna teach them to fly!

I love you my sweet boy I miss you so. Please come home and see you Mama. We taught you how to fly, didn't we Nick? Breathe easy my son.

Brayton's tricks

This is little Brayton. He makes me smile. He is battling Hemophagocytic lymphohistiocytosis (HLH), a rare disorder of the immune system that is treated like cancer with chemotherapy and bone marrow transplant. Brayton has already had a BMT and is still battling the many complications that come with his disorder and the BMT. Please pray for him. You can check out his Caring Bridge page at http://www.caringbridge.org/visit/braytonmartin

Stages of Grief

Bad Doctors

Where are all those awful doctors now?
They are doing their own lives.
Are they applying all their research data to other patients, like they did to Nick?
They have not a care that my son is dead.
Nick meant nothing to them.
He is only a statistic now,
And a bad one at that!

Soul In Mourning

This experience is like a steaming pile of shit.
Nobody likes the smell of it.
Nobody wants to step in it.
It ruins a good pair of shoes.
You can never get that shit out of your soul.

People Do Haiku

People say they care.
I wish I knew how to tell
if they really do.

Sad Pie Haiku

My son is gone pie.
Served warm with a side of pain.
Won't you have a slice?

A Place With Trees

If I could find a place that had trees like this I might be able to let Nick's ashes go in the ground. I would like to think of him looking up to this view. But then again, who says he would be looking up from the ground. So stupid. I just know Nick would like being in the woods, with the trees, with nature.

Still struggling every day. This past week has been quite bad. I am heartbroken and I do not know how I will EVER find my way back to feeling even remotely decent. I feel like I am drowning in the murky waters of grief and sorrow.

I have a book that I got years and years ago from the library. It was being sold as a used book and I brought it home. How strange all these things that I have in my life that are now being used to heal my own wounds! The book is called, "Meditations for the Terminally Ill and Their Families." Each story speaks to the myriad of emotions that come with learning that a loved one has a terminal illness. The editor and author of one story, Judy Osgood, also writes, "no one understands the peace that can come from confronting that diagnosis, nor can they grasp the courage for facing it, or the hope for dealing with it like those who have walked that lonely road."

In Nick's case, we rarely confronted the possibility that Nick's leukemia could be a terminal diagnosis. We all wanted to believe that Nick would be one of the lucky one who would beat a disease with basically a horrible prognosis. As I recall, NO ONE ever spoke to us about the chances of beating this disease. I know the odds were not in our favor. I read the research papers and saw the statistics, but, I carefully filed those in the recesses of my nurse brain and tried to move forward with blind optimism. Bone marrow transplants are usually a LAST RESORT and bone marrow transplants are fraught with complications beyond the imagination of even the most medically savvy patients and family members. If they told you all the bad things that could happen you might choose to forgo this wonderful "cure."

In this book, the mother of a sixteen year old boy had to learn to accept that he would never accept his cancer as a terminal illness. He was going to make it. He was going to live. In her story she says, "Finally, I did not force my son to face the fact that he had a terminal illness. I let him call the shots on that one because his age dictated his need to deny he was dying until his very last breath." She follows this statement with a quote by Phyllis Hobe, "It was, I discovered, a time for a special kind of love that is gentle with the dying and ferocious with death."

Nick never spoke with me of "terminal illness." I know he honestly believed he would beat his cancer. He told me all the time, "It's gonna be alright, Mama." Of course, now I know that could have meant anything, but, I don't think Nick would have chosen to do all the treatments that he did, if he did not think he was going to make it. I constantly second guess all the decisions we made. I wonder if Nick was made to suffer needlessly because no one had the guts to tell us that there was no hope. We were always clinging to hope. Hope that things could be fixed and made right somehow. Hope that Nick would be the miracle. Hope that Nick would survive.

Another gentleman, Harold P. Radtke, wrote the following after finding out about his diagnosis of a terminal illness..."Death, or any personal compromise with it, is beyond my ability to comprehend; at least in the present. What I can understand is life, in whatever measure of time it is yet to be mine; and it is that which I must contemplate while I still have it. Lord, give me the wisdom to know not only what to do, but when to do it." So like Nick, this person discovers that he is hard-wired to fight for life. Despondent over his life being so unfairly cut short, Mr. Radtke found the idea of his impending death was weighing so heavily upon him that he could not live the life that he had. He came to realize that he could not ponder the imponderable and he was wasting time in trying to do so. He determined that he would live the life he had day by day, moment by moment. Accepting that you have just been given notice that your life will soon be over, gives you the freedom to do things differently than if you are still thinking you are in it for the long haul.

Throughout Nick's illness, we were never working from this premise. It seems we were all trying to avoid discussing the elephant in the room. Was I the only one who knew it was there? I know the doctors had to know this, but, they never brought it up. It seemed like Nick felt he had to be strong, whether only for himself or for others. What toll did that take on him? Why was he never able to share his fears, his worries, his concerns about the possibility of his death? Was he like that sixteen year old who needed to deny death until his last breath? In denying it, did we lose the opportunity to acknowledge that this might be the end, that we might have a finite amount of time left to talk, to share thoughts and fears and wishes for the end of his life. He wanted to do so much. We always put those things on the back burner until he was "better."

At the very least WE COULD HAVE BROUGHT HIM HOME TO DIE! THAT IS WHAT HE WANTED AND I WISH WE COULD HAVE GIVEN HIM THAT. THE WAY THINGS WENT DOWN THAT BECAME IMPOSSIBLE. I have so much anger and frustration over how things went down during that last week in the hospital. The suffering and pain that Nick had to experience. The suffering and pain that we had to experience. I cannot even talk about it for it will bring up to many horrible memories that I cannot bear to think about right now. Those images are forever etched in my mind.

But this poem from the same book is what I wanted to share. This poem makes me wonder if this is what it felt like for Nick; not being able to let down his guard or put down his sword as he was fighting the battle for his life. Nickolas never thought of himself as brave or courageous, but he was. He gave it his all and did so without complaint or negativity of any kind. I will never forget how hard Nick fought and the things he was willing to suffer in order to survive. I pray that I was able to bring him some comfort in all those days we spent together. I pray he knows he was loved beyond measure by all of us who held him up as best we could against such an evil enemy.

"Even Warriors Need To Rest"

"Lately I've been fighting battles left and right,
But even winners can get wounded in the fight.
People say that I'm amazing, strong beyond my years,
But they don't see inside of me, I'm hiding all the tears.
They don't know that I go running home when I fall down.
They don't know who picks me up when no one is around.
I drop my sword and cry for just a while.
For deep inside the armor, the warrior is a child." ~Twila Paris

I love you always and forever my beautiful son.

I Won't Let Go of Your Hand

These are my babies after a trip to Frontier Town in Ocean City many years ago. My two baby chicks. I love them so. They were born four years apart and yet they were always two peas in a pod. Now Sara is in her pea pod all alone...her brother cruelly taken from this life. No longer four...we are now only three. In my family of six siblings, each of us had two children. My sister Barbara has two girls, my brother Dan has two boys, and my brothers Steven & James, and my sister Elaine & myself, each had a boy and a girl.

We were a nice even numbered group. Now since Nick has left us, we are ODD and uneven, just like the jagged edges of our broken hearts. Now Sara is without her brother and Glenn and I are without our beautiful son. There is not a day that goes by that I don't ache to have Nickolas back with his loving family where he belongs. I am still daily reminded of the harsh reality of this loss. Today the sky was so blue and there were big, fluffy, white clouds floating in it. I just stared up at the sky and started to cry as it hit me again that Nickolas is forever gone from our lives. Oh my sweet boy how I grieve for you. How can I begin to explain all the changes that your death has brought to all of us and especially to our little foursome. We all miss you so much. Our family is forever changed without you here.

I love this picture because to me it tells a story of the sweetness and innocence of our babies before they grow up and stop listening to their parents and do things they shouldn't be doing. Some times I just stand in Nick's room and look at all that is left of my son...his clothing, his pictures, his books....things. They all trigger memories of one kind or another. Memories are not enough. Sara's brother cannot be replaced. She will never have her big brother to stand up for her, to give her advice, to fuss with, to aggravate Mom & Dad with, to dance with at her wedding and so many other things. She won't have an uncle for her babies and she won't ever be an aunt to his babies. Does anyone actually ever think about all these things? I do. These are the things that are going through my mind every day. There is a constant streaming in my head and my heart. The topics are varied...baby Nick, young Nick, high school Nick, college Nick, good Nick, bad Nick, sick Nick, really sick Nick, happy Nick, sad Nick, future lost Nick. Sometimes I find things that make me so sad. Things that tell a story about the person he was a child and others that are a reflection of Nick as he was before this horrible disease ripped him from our lives. As a grieving Mom, I guess I just find wonder in looking at my son from this teary-eyed distance. A distance I never wanted nor anticipated. Nick was a sweet and gentle soul with dreams and goals for his life. While he was here, he made us smile and he loved us fiercely. I just want him to come home to his family.

"Memories"

Memories fill me,
lodge in my throat,
cover my body,
a sorrow-lined coat.

Layers of melancholy
tears cannot reach
well up inside me,
resisting release.

This poem excerpted from STARS IN THE DEEPEST NIGHT
by Genesse Bourdeau Gentry, 1999

Cut Him Out In Little Stars

He spake well who said that graves are the footprints of angels.
~Henry Wadsworth Longfellow

This is what I call the "What Not To Wear Trio."
A picture that seems from so long ago. This photo was taken in the backyard of Glenn's parent's rowhome in Essex. On Saturdays, Pip & Nana often would babysit Nickolas while Glenn & I went off to teach gymnastics and dance classes.
Nick doesn't look to happy about something. Maybe it is that flannel shirt I am wearing or perhaps it was that blue hoodie with the orange sweatpants! Ha! I remember that little blue hoodie. Oh my sweet little boy, I loved you so then and I love you so much now. My heart aches for you every day.

I was on the phone with my accountant's office. The nice lady there who is helping me get my Quickbooks together for taxes was talking to me. She was so excited because she was going to be a grandmother for the second time. My mind immediately went to Nick and how Glenn & I will never have any grand babies from our sweet son. How none of us will get to see Nick be a Dad. I won't get to hold Nick's babies and I won't get to hold my baby in my arms ever again.

Today marks another "13th" on the calender. I struggle every day to make sense of this loss. I am starting to understand that I have only just begun the process of trying to find meaning in a world without my son. As I wrote to another struggling with a recent loss, I am trying to find islands of peace in my ocean of sorrow. Right now, those islands are few and far between.

When he shall die
Take him and cut him out in little stars
And he will make the face of heav'n so fine
That all the world will be in love with night
And pay no worship to the garish sun.
~William Shakespeare

Raindrops Keep Fallin'

Future Past

Our joyous life.
in memories, past.
The future dead,
horror-cast.

Yesterday held us,
secure and sane.
Today, our tomorrows,
lost in pain.

No bright beginnings,
No dreams to come true.
Just get through today-
just get through, get through.

This poem was taken from the book, "STARS IN THE DEEPEST NIGHT" by Genesse Bourdeau Gentry, 1999. Genesse Gentry is a bereaved parent who lost her twenty-one year old daughter, Lori Ann Elizabeth Gentry, in a car accident on June 28th, 1991. This collection of poetry is an expression of her journey through grief after the loss of her daughter. In the introduction of the book, Ms. Gentry states, "It has been deeply gratifying for me to find that these poems help other bereaved parents and can create little miracles of understanding in the non-bereaved as well....I believe that deep inside all of us is the need to understand and be understood by others. In their own small way, that is just what the poems seem to help us do. Bereaved parents walk long and often lonely roads. Their unbearable grief is often exacerbated by the subsequent loss of relationships with friends and family members who feel unable to cope with the depth, intensity and duration of the bereaved parent's pain and heartache."

Give sorrow words; the grief that does not speak whispers the o'er-fraught heart and bids it break. ~William Shakespeare

Dashed Hopes

This photo is called "First Light of the New Year." The sky light is so beautiful and serene, the opposite of how I feel. I hope Nickolas is finding peace where ever he is right now. I cannot seem to find any right now. On this date one year ago, Nick was still in the hospital. The day before, on January 2nd, we received the shocking news that Nick's leukemia had relapsed in his spinal fluid. I remember the horrible feeling in the pit of my stomach. It was devastating news for all of us. I really think we were all in shock....how could this happen so soon after his BMT? How was this fair? Leukemia does not do "fair." We never discussed what this meant for his chances of recovery. Of these things we never spoke. It was like some unwritten rule that we must all pretend that everything was going to turn out just fine if only we believed it hard enough. I thought that Nick had already been through hell...but, deeper, darker depths of hell were to come. And so we began to walk down another dangerous path oblivious to the dead end we would soon encounter; by the time we figured it out, it was too late to turn back.

"Toss your dashed hopes not into a trash bin but into a drawer where you are likely to rummage some bright morning". ~Robert Brault

I have started a new playlist for the new year. Some old songs may appear. I called the playlist "A Fresh Start" because it reminds me of something Nick used to do in the hospital. After he got his tracheostomy and he could no longer speak anymore, he had to write everything in order to talk with us. When he first wanted to write I grabbed the closest paper that was handy,which was a sketch pad that Nick was using to draw and make sketches. He wrote on this pad for several days, at one point, stating profoundly that writing in this book was "a waste of a good sketch pad." I was amazed he would worry about such nonsense, but, he was a frugal guy and he did not like waste. Anyway, a few weeks or so into this process, when Nick would fill a page, he would turn to a new page and he would always write, "FRESH START" at the top of the page. I am not sure why he would write this...symbolic maybe, or hopeful that things would soon turn around. Or maybe it was the drugs he was on or maybe it was just my sweet Nick trying to make some sense out so much pain and suffering. Anyway, I guess now I have to make my own fresh start. I know that is what Nick would want me to do. Nick, I love you so much...I miss you more each day. I love you more than a wagon full of puppies. Please come home. Mom