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.

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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

Ride The Wind

And ye, who have met with Adversity's blast,
And been bow'd to the earth by its fury;
To whom the Twelve Months, that have recently pass'd
Were as harsh as a prejudiced jury -
Still, fill to the Future! and join in our chime,
The regrets of remembrance to cozen,
And having obtained a New Trial of Time,
Shout in hopes of a kindlier dozen.
~Thomas Hood

Last year, at midnight, Nick was in the hospital. Glenn & I had gone home to give Nick some quiet time with Kate. At midnight, Nick called home to wish us a "Happy New Year." I didn't know it would be the last time I would celebrate the new year with my son. The loss of the future I would have with Nickolas brings me to tears every time I think of all the things I will miss. This new year will not bring me joy. I do not know what the year will bring. Right now I cannot imagine anything more than continued sorrow and pain. I will keep walking on this journey and pray that Nick's spirit will guide me and give me strength to drive on.

Good for the body is the work of the body, and good for the soul is the work of the soul, and good for either is the work of the other. ~Henry David Thoreau

If you surrender to the wind, you can ride it. ~Toni Morrison

So Sad

One year ago on this date, Nick had to return to the hospital. We had spent a pretty much ratty December of 2008, running back & forth to John's Hopkins. After two and a half months of IPOP, Nick had been moved to the "clinic." In my notes I question whether this is a good thing or a bad thing, mainly due to Nick's rough IPOP course and my feeling that Nick really wasn't doing that well. Going to the clinic is supposed to mean you are doing better and you need less monitoring, that things are moving in the right direction and you are starting to get "better." Well in my opinion, Nick was NOT starting to get better. December was a rough month for him and for all of us. He wasn't feeling well for many of the days of this month. We all kept putting a good face on it, trying to wish and hope are way to a better physical body for Nick and all the while thinking that Nick's leukemia at least was gone. Now all we had to do was deal with all the side effects of the graft vs. host, the medications, and try to find ways to get Nick back on track to recovery. Nick's last day in IPOP was December 1st. His first clinic visit was December 3rd. On December 3rd, I wrote the following in my notes. "Nick with cough & cold symptoms AGAIN!" His counts were low and he was not feeling well. So even on the first clinic appointment, I felt that things were not right. After that day, there are numerous times I wrote about how poorly Nick was feeling and how bad he looked. This continued to get worse as the month wore on. Now in hindsight, I KNOW that Nick's lungs had already begun changing starting in late November. He coughed for EIGHT WEEKS!!! This was his lungs trying to tell us that something was going on.

Christmas came and Nick did not feel well. He had started with headaches that continued to worsen as each day in December passed. He was losing his appetite and his weight started to drop. By Christmas day Nick gave it his best effort, but, we all knew he did not feel well. As we opened presents on Christmas morning, Nick was just not himself. He looked terrible and I remember thinking to myself, "Oh dear God, this could be Nick's last Christmas! This might be our last Christmas together!" I never said this to anyone. I was so scared that this would make it come true. I didn't understand why I would have this horrible feeling. As a nurse I knew all the bad stuff that could happen and yet, I didn't want that to be the case for my son!! I wanted to be positive. I wanted to be WRONG to chalk it up to over-reaction and over-protection! I prayed to God to save my boy. I prayed that whatever was going on with him was just temporary and he would pull through it. I didn't know what was wrong with him, but, I knew SOMETHING WAS TERRIBLY WRONG!"

The day after Christmas was so bad. Nick just didn't feel right. He continued to have headaches, nausea, vomiting, he was unable to drink enough fluids and his appetite was gone. I called the doctor that day and they told us to "watch" him and call back if anything changed. Well things changed for the worse over the next twenty four hours and we called again on December 27th. Thank God one of the doctors I really liked was on call. She told us to come in right way. We HAD NO IDEA WHAT WAS WRONG WITH NICK.

The first days of that admission were a blur. Poor Nick was in SO MUCH PAIN. THE HEADACHES WERE LIKE MIGRAINES AND HE WAS NAUSEOUS AND THROWING UP pretty much around the clock! No one could figure out what was wrong...days went by until finally a different attending came on and he had a suspicion (which no one told us) and he ordered a lumbar puncture. The LP was done on New Year's Eve! So Nick suffered for five days before this test was done and still no one knew what was going on. It was on January 2nd that we got the UGLY NEWS THAT NICK'S LEUKEMIA WAS BACK IN HIS SPINAL FLUID and this was what was causing all the symptoms. This was just one of many devastating blows to come. Little did we know that this admission was the beginning of the END for Nick!! It was during THIS ADMISSION that Nick's CT scan showed changes called "ground glass opacities." It was during this admission that the pulmonary doctors consulted on Nick, saw this CT scan, told us it would need to be followed up, but, "they were not worried right now." This is when Nick should have had pulmonary function tests done or at least scheduled for some time after his discharge. Everyone was so focused on his CNS relapse that this little piece of data (along with all his other symptoms of cough, SOB, pale, dizzy, etc) got lost in the shuffle and Nick's lungs fell through the cracks!

My God it just breaks my heart into a million pieces to think of this stuff. But, this is what I will be reliving from now until next August and most likely FOREVER!!!! I feel that I have to retell and retell and talk about all that went down, because now it is as if I am watching a movie that I was in and I cannot believe all that Nick went through. I cannot believe what we all went through. I cannot believe that this is how all this is going to END! I cannot stop questioning if only we had caught his lung problem sooner. If only the doctors had listened to me, if only things could have been different, maybe my beautiful son would still be alive or maybe he wouldn't have had to die in a hospital hooked up to a ventilator and maybe I wouldn't be feeling such horrible pain right now. It seems like it will never stop. How much pain is too much? How many hours, day, months, years are enough? This has been going on since May of 2008, the day Nick was diagnosed with this horrible disease. It started then and I don't know when it will ever stop. All I know now is that on this date one year ago, after a sad and bittersweet LAST Christmas, my son had to celebrate his LAST New Year's Eve and New Year's Day in the hospital. Nick didn't even remember any of it due to the pain killers he had to take. He started the New Year with a ten day hospital admission and a diagnosis of leukemia relapse only four months to the day of his BMT! And compared to what was to come, this now seems like child's play!

How is a mother's heart supposed to accept this? How will I ever learn to live with theses thoughts and memories of what happened to my child?

“It is a time when one's spirit is subdued and sad, one knows not why; when the past seems a storm-swept desolation, life a vanity and a burden, and the future but a way to death.”
~Mark Twain

“I ask not for a lighter burden, but for broader shoulders.” Jewish Proverb

Nick would always tell us and the doctors that his back was strong and his shoulders were broad. His attitude was "bring it on," I can handle it. He did not know his enemy would be so formidable and yet he still fought so hard to win because life and those he loved meant so much to him. I think everyone at the hospital was always amazed at his ability to carry this "burden" as I describe it. Nick would not think of what he went through as a burden. He would see all he was going through as a way to hang onto life, to be able to stay with his family, his friends, and the people he loved so much. I pray to God to give me the broad shoulders I will need carry on in this life. I pray for my son to show me how to be a better person even without his wonderful presence in my life. I love you Nickolas. I need you so much right now. I love you more than a wagon full of puppies. Mom

The Edge of All Light

Some days I feel like a person with split personality disorder. Each personality is ruled by emotion and my emotions are volatile and unpredictable. There is no map for this journey and there are no instructions as to how you keep all these emotional people in check. Christmas is two days away and I am numb to any feelings of joy or happiness. It is a horrible feeling. I cannot be happy, my beloved son is gone. The sad me cries all the time. I was in the attic purging things and I found what I now call "Nick's radiation head." This is the honeycomb form Nick had to clamp onto his head during his radiation treatments. We all hated that thing and we almost threw it away. Nick did not want to look at it because it evoked such bad feelings so we put it up in the attic. Whenever I go up there I see it, only now I treasure this ugly thing because it is exactly in the shape of Nick's head and when I put my hands on that form, it feels like Nick. I just want to hold his head on my lap and feel his peach fuzz hair growing back. I want to hug his neck and tell him how much I love him. Sad me thinks about how much I am missing my beautiful son and how we are all grieving for him. There will be no Santa for Nick this year or any other year for that matter. I will not get any Christmas cards from my son. And getting cards with only three names break my heart in two. It's OK to write Nick's name! He is still part of our family. Luckily I don't usually send cards, but, in future if I do, I will include Nick's name with a small cross or an angel drawn next to his name. This way he is still with us, he is still part of us, just as he should be and ALWAYS WILL BE!

I am glad I do not have to do any shopping (except for Sara and Glenn). I cannot walk through a men's department without thinking about Nick and what I might be getting him for Christmas. I have found old Christmas cards he gave me and I wish he liked to write more than just "Love, Nick." I yearn for words and parts of him that I can hold onto so I don't lose him. I am so afraid I will lose him again if my memories don't stay strong.

Angry me does not want to find a "new normal." Angry me does not want to create "new rituals." Angry me could care less about "finding ways to integrate the loss of your child into the rest of your life." I don't want to live the rest of my life without one of my children. How can I celebrate anything right now, let alone, Christmas! Angry me wants to know why every time I go to a doctor they keep telling me that there is nothing wrong with me. "Look again you idiot's! There has got to be something wrong with me...my child is dead!" How's that for holiday cheer. There is a lot of anger and sadness. This does not make for a good me.

Nancy Nurse in an effort to promote the "healing" me will now present something I am sure everyone will like and maybe it will grow on me. But for now, it is just a lifeline for me to try to hang onto. I am going through the motions, forcing myself to TRY to find a way to spackle over this gaping wound in my heart, in my family, in my life. It is one of those new traditions that I might try, cause when I read it, I liked it. And since I get to do whatever I God damn well please right now and forever (this is like pulling the leukemia card, only I will now call it pulling the "dead child" card...see angry me again. Sorry! That is a bitter pill to swallow, isn't it? Especially at this time of year. Deal with it...I have to. This is why I have to stay away from polite society. When Nick was alive, I had hope. Now I only have despair.)

So here is the new tradition, which is not my idea, I found it on a website that offers ideas of how to cope with the loss of your child over the holiday. Get a wreath, small tree or garland. Get five candles and place the candles around the greenery. Light each candle as a representation of the following ideas.

"As we light these five candles in honor of you, we light one for our grief, one for our courage, and one for our memories, one for our love, and one for our hope.

Candle #1 - This candle represents our grief. The pain of losing you is intense. It reminds us of the depth of our love for you.
Candle #2 - This candle represents our courage -- to confront our sorrow, to comfort each other, and to change our lives.
Candle #3 - This candle is in your memory--the times we laughed, the times we cried, the times we were angry with each other, the silly things you did, and the caring and joy you gave us.
Candle #4 - This candle is the light of love. As we enter this holiday season, day by day we cherish the special place in our hearts that will always be reserved for you. We thank you for the gift your living brought to each of us.
Candle #5 - And this candle is the light of hope. It reminds us of love and memories of you that are ours forever. May the glow of the flame be our source of hopefulness now and forever."

“When you have come to the edge Of all light that you know And are about to drop off into the darkness Of the unknown, Faith is knowing One of two things will happen: There will be something solid to stand on or You will be taught to fly ." ~Patrick Overton

Just Come On Home

Kate D. posted this on Sara's facebook. She said that Nick really liked this song when he heard it on Chuck. Here's what Kate wrote, " juuust remembered this song. nick and i were watching chuck one night in the hospital and this song came on and he loved it. hope it makes you smile and not cry, but chances are it will make you cry." Here are the lyrics too.

It's okay to have scars, they will make you who you are
It's okay to have fear, as long as you're not scared of coming here
And in the middle of the night, just call if you wanna talk
'Cause you know that I wanna talk too

It's not bad of you to think of what might go wrong
But you can't blame me for secretly hoping that I'll prove you wrong
It's okay that I pray that you will miss your flight
And have to stay with me another night

And it is brutal, it's brutal, why can't you see
It's brutal, it's brutal, where have you been
'Cause we're far apart and my lonely heart
Finds it hard to get through the night
You pull me out of the dark and now it's light
You pull me out of the dark and now it's light

When we're out in the market and out on the streets
I've got a pocket full of problems and a pocket full of seeds
Hoping something good might grow out of this mistletoe
And I won't have to erase your memory

I like the way that our arguments stop when we fall asleep
And the way that your body feels when it's wrapped around me
And I'd like it if you made it to mine by Christmas Eve
So you can hold me
And we'll watch Christmas TV

And it is brutal, it's brutal, why can't you see
It's brutal, it's brutal, where have you been
'Cause we're far apart and my lonely heart
Finds it hard to get through the night
You pull me out of the dark and now it's light
You pull me out of the dark and now it's light

So come on home, just come on home
Just come on home, just come on home... (repeat)

I love you Nick. My heart aches for you every minute of the day. I miss you so much, now more than ever. Please come home to see your Mama. I love you more than a wagon full of puppies. Mom

Four Months

Four minutes,
Four months,
four years.
My heart aches all the same.
The sadness flows from my eyes.
The tears never seem to stop.
Missing you Nick.
Missing your joyous soul.
Missing your smile.
Missing the way you would brighten my day.

Missing the love you brought to all of us.
Nothing is the same without you near.
I will never be whole again.

On this date four months ago today, my sweet son was taken from this world by lungs that betrayed him and a system that could not save him. These ugly truths haunt me and I fear they are tearing me apart. I am doing the best that I can, but, it feels awful right now.

Today is the Worldwide Candlelighting Ceremony sponsored by The Compassionate Friends. The candle lighting event takes place all over the world in remembrance of all children who have died. This event always happens on the second Sunday in December. If you go to this site, you can leave a message for Nickolas. I hope everyone will take time to send your thoughts and love to Nick. It makes me so sad to wonder where he is and what he is doing. Is he happy? Is he afraid? Is he hungry or cold? Are his lungs healed now and he is free? I wish I could KNOW that! I wish I could have one of those Hallmark movie moments...and it would stop hurting so much.

Last week I received a poem from one of my dancers at the studio. She wrote the poem after Nick's memorial service and mailed it to me this past week. I was so touched that this wonderful young lady would take the time to write a poem about Nick and though it made me cry (as everything these days is wont to do), it also made me happy to have this poem in my hands that reminded me that our wonderful Nick is not forgotten; that he was and is much loved, as are those of us who must remain here on this earth and carry this burden of grief. Here is her poem.

"Nick"

I didn't know you in life,
But I know your mother.
She offers a second home,
And I've grown to love her.
I didn't know you,
But, I've prayed for you,
I didn't know you,
But, I've cried for you.
And now that your gone,
The piece of me that cared for you
It burns brightly, it lives on.

I didn't know your kindness
or the way your serenity filled up the room,
But, I've seen the lives you touched,
The people you brought together.
You may not be here right now,
But, those lives will be changed forever.

I wish I could have met you
To see this wonderful man in person,
But, I guess now I'll have to wait
For God to open his pearly gates.
Please wait for me, Nick Pippen
Wait for me to come,
Be the first to welcome me,
Into God's Kingdom.

Daring All Things

"A mother's love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path." ~Agatha Christie

All but Death, can be Adjusted --
Dynasties repaired --
Systems -- settled in their Sockets
Citadels -- dissolved --
Wastes of Lives -- resown with Colors
By Succeeding Springs --
Death -- unto itself -- Exception --
Is exempt from Change
~Emily Dickinson

I tried so hard to protect you my son, to keep you from harm, and never let anything happen to you. It is no wonder I feel so helpless. I am so sorry Nick. I don't know why this had to happen to someone so wonderful. You are forever and always in my heart. I love you. Mom

Tears On My Pillow

I cry a lot. "They" say that crying is a good thing. Sometimes I cry so much I can't cry anymore. So for a little while I don't cry. Then as if by magic, I start crying all over again. I am not afraid to cry. I know I need to cry. I have boxes of Puffs Plus strategically placed around my house. I am sure to bring tissues whenever I venture away from the house. Here is some good stuff about crying from a book I am reading called "A Time To Grieve" by Carol Straudacher.

1. "The tears we cry when we are sad have a different chemical make-up than the tears we cry when we are not sad."

2. "Crying from sadness gets rid of toxins in the body." Good! I never much cared for toxins.

3. "Crying is nature's way of releasing stress and helping me to heal." Based on the buckets of tears I am crying, I should be well on my way to being "healed." Why don't I feel like I am any better?

4. "It can be harmful to suppress one's need to cry." I feel fortunate that most times I can cry. I do feel that I have to suppress the tears when I am out and about. But anywhere I am alone is a good time to cry...the car, the shower, public restrooms. I used to cry a lot in the bathroom at the Hop. I always used to think of it as the "confessional" on MTV's Real World show, only without the cameras.

5. "Deep sadness and bouts of crying go together." These crying jags may seem endless but they will run their course.

6. Following the death of a loved one, "there is a well of feelings that resides in each of us. We must dip down into that well and pull and pull until EVERYTHING has been pulled to the surface." Crying helps to get those feelings out of the well. "By unleashing the feelings that cause me to cry, I am helping them to gradually dissipate, to lose their power. I am setting them free so that I, too, may one day be released from grief's torment."

I sometimes wonder how I will ever stop crying. The grief and sadness I feel are sometimes overwhelming. People see me and think I am doing OK. They have no idea what I am going through. I wish I could help them understand. I guess this is the best I can do right now. I do take solace and comfort in the books I am reading...they put what I am feeling into words and help me see the depth of the well and the reasons for all the emotions and feelings that are in that well. If the depth of the well is proportional to the love I have for my sweet boy, well, that is a damn deep well. Will I ever be able to pull everything up from that well? How many tears will I cry?

"The emotions may be endless. The more we express them,
the more we may have to express." ~E. M. Forster

"Tearless grief bleeds inwardly." ~C. N. Bovee