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