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

Sorrow Walked With Me

Last Thanksgiving seems so long ago. Nick was here with us. He was still recovering from his bone marrow transplant. He was out of the hospital and although it had been a rough couple of months in the IPOP, Nick seemed to be headed in the right direction. Nick was feeling pretty good and I remember he had a pretty enjoyable time hanging out with family and just being Nick. He even played some basketball!! I remember freaking out when he came in all winded and short of breath, but, he was happy. I wish I could say that there were more happy times to come. I wish I was going to have the future with my son that I always dreamed I would have, that all of us dreamed we would have. Those dreams and hopes are gone forever and yet, I am still having trouble comprehending this reality. I am sure I will never be the same. Words cannot express how I continue to miss my sweet son. To me it doesn't matter what day it is, what holiday it might be. Thanksgiving is no different than any other day. I miss my son to the core of my being, it is an ever present force in my life, a hole in my heart, an ache in my chest, and a pervasive sadness that colors everything in my world. Today as Glenn fixed dinner, I thought of Nick and how he would have helped his Dad peel potatoes or cut celery. I thought of how Nick would have so enjoyed being with his family this year and sitting down together to eat such a wonderful meal. He so loved his food after all he went through with his illness. We all wanted Nick to be with us this year. We wanted him to be on the mend and healed. We wanted so much for Nick to be able to move forward with his life, for he had so much to give and he was so willing to give it. We wanted him to be here with us forever and always.

I love you my beautiful son. I miss you with all of my heart. I long to hold you in my arms and never, ever, let you go.

"Along the Road"

I walked a mile with Pleasure;
She chattered all the way.
But left me none the wiser
For all she had to say.
I walked a mile with Sorrow
And ne'er a word said she;
But oh, the things
I learned from her
When Sorrow
Walked with me.

~ Robert Browning, Poet

Turn To Stone

This post is not very coherent, which actually reflects the usual state of my mind these days. So here are the random thoughts that have come to me.

My life is like this photograph. I live in black & white and every now and then a spot of color jumps out at me. I like to keep flowers in the house. It always made me sad that Nick couldn't have live flowers. I remember during one of his times in the hospital, I bought a bunch of fake flowers and put them in a vase. They were pretty, but, not the same as real. Now I buy a bouquet and split it up between Nick's bedroom and the living room. The Bonsai trees we bought for Nick's memorial are thriving, but, they are sad reminders of yet another thing that Nick never got to do. Nick always wanted a Bonsai tree. He never got around to picking one out. I wish he had. When I get flowers, I like to get white ones, I guess because the color white reminds me of angels and Heaven and clouds and the innocence of our lives before we lost our wonderful Nickolas.

I have a book where the year is broken down into months and each month is broken down into days. The purpose of the book is to write down important dates like birthdays, anniversaries, and deaths. The tears blurred my vision as I wrote my son's death date in that damn book. I don't want my son's name in that book for a death date. I want it to be in there for his wedding anniversary and the birth of his children, for happy reasons. Not for this horrible reason.

I was going through a box of cards. I am in the mood to throw shit away. What's the use of being sentimental? I found a letter that Nick wrote to us in February of 2006. He was in Savannah, Ga. for his work. He wrote the letter with a calligraphy pen (he was trying to learn how to do calligraphy) and that was something he wanted to get better at doing. He had even asked me to bring his calligraphy pens and ink to the hospital. But, HE NEVER GOT TO USE THEM!!! The letter makes my heart happy and sad at the same time. I cannot tell you how much it means to find things he has written to us in his own hand and words. It is better to see the actual letter but, here is what he said.

Family,
I write you from Savannah, Georgia
It is a most beautiful city
with warm charm & charisma.
I have little skill with this pen and am covered in ink.
I miss you all and is the reason for this letter.
It's nice to be on the road, but, it's quite lonely.
Hopefully, I'll talk to you soon.
your loving son & brother, Nick

Then he drew some funny pictures of him with crazy hair and a beard and a sun shining down.
Now it makes me sad thinking...why didn't I call him more, why didn't I talk to him more? Why must I have these regrets? I miss him SO MUCH every single moment of the day. I see his scrawly handwriting and it reminds me of all the writing he did during his last month at the hospital when he couldn't talk anymore. I cannot even look in that book right now, for it will tear me apart.

I have a lot of anger, impatience and sadness bottled up inside of me. I must expend a lot of energy trying to keep my mind a blank while I am out and about. I don't stay away from home for very long. I cannot be away from the house for too long without getting antsy. I cannot explain half of what I am experiencing and I am endlessly trying to figure out how to get it all out. I don't know what to DO to fix this, since the only thing I want is for Nick to come back. I have decided that I have a lot of sad and dare I say traumatic memories of the fifteen months spent taking care of Nick. I don't know what I am supposed to do to work through all these feelings. Those bad experiences are the worst and when I think about them I get really upset. I am going to the doctor in early December, hopefully she can refer me to someone who can help.

I went to my second meeting with the Compassionate Friends group. It is a good group of people who happen to be mourning the loss of their children. I wish I didn't belong there, but, I lost my child and therefore I have a lifetime membership. I like the group because we all share the same horrible loss. Our stories may be different, but, the pain of the loss is the same. They have been there, they are still there, we will always be there. We are all traveling this road together and yet, it's quite lonely. I long for my handsome and sweet son to return to his family. WE ARE ALL HURTING SO MUCH. I miss his company and his good heart. I want to hear his voice and feel his arms giving me a great big hug. I want to be able to go to bed at night without crying when I turn out the light to his room and leave him alone in the darkness. I want to wake up and find that he is with me. I know this will never happen and my world seems forever black and white.

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

With what a deep devotedness of woe
I wept thy absence - o'er and o'er again
Thinking of thee, still thee, till thought grew pain,
And memory, like a drop that, night and day,
Falls cold and ceaseless, wore my heart away!
~Thomas Moore

Missing You Baba Looey

Three months and our hearts still break
Three months and we feel still feel the pain of your loss as if it was only three days.
Three years and we will still feel the hole your passing has left in our lives.
How many days will I mourn for you my son?
I don't know the answer. I am so sad without you.
I hate that you had to be the one that got leukemia. Some days I still cannot believe that it is real. Did all this really happen to you? To all of us? Why, why, why? I hate that you died. I hate the day you died. I hate odd numbers and I hate the number 13! What kind of a day is August 13th? That is not a good enough day. It is a day that now sucks every time it rolls around on the calender. I am not superstitious. Friday the 13th means nothing but a day of tears and disbelief that another month has gone by and still I cannot wake up from this nightmare.

At the hospital Nick had a dry erase board in his room. The nurse would write the date and his or her name. But, we always drew pictures (Kate drew the best pictures) for Nick to look at and we would write messages there for him to read. There is a dry erase board in Nick's bedroom now. I write on it sometimes. I wrote this a while ago and it hasn't been changed in a while.

My dearest Nickolas,
I miss you so much.
I miss your smile.
I miss your hugs.
I miss your bright eyes.
I miss giving you hugs and holding your hand.
I miss your gentle spirit and your welcoming soul.
I love you more than a wagon full of puppies. Mom

"...I shook the hand of time and I knew
That if I lived til I could no longer climb my stairs
I just don't think that I will ever get over you.
Your face it dances and it haunts me
Your laughter's still ringing in my ears
I still find pieces of your presence here
Even after all these years." ~ Colin Hay

Falling Apart

Well my computer crashed the other day...just like my life crashed almost three months ago. The diagnosis was a busted hard drive. After much rumination decided to just get a new computer. Just like that...presto, chango, new computer. But, I don't know how to do everything on this computer. I HATE IT! I have no patience for this sort of BS. Short fuse, getting shorter. My stomach has been hurting a lot lately. I wish I could get a new hard drive for my life. Sara had a dream about Nick last night. I was very jealous. She said that Nick had come into her room to look at her paintings. I always ask if it was "sick" Nick or well Nick. She said he was well and looked good. It made me happy that she got to see him. It made me sad that I didn't. I rarely have dreams anymore. Nick & I often talked about this when he would have dreams. Sometime near the end, he would have bad dreams. This would make me so sad. Nick never used to have bad dreams. I want to see him so badly. I want him to come home. Please come home Nick. I miss you so. Mom

“Turning and turning in the widening gyre The falcon cannot hear the falconer; Things fall apart; the centre cannot hold; Mere anarchy is loosed upon the world, The blood-dimmed tide is loosed, and everywhere The ceremony of innocence is drowned; The best lack all conviction, while the worst Are full of passionate intensity.” William Butler Yeats

The Darkness Shall Be Light

I picked this picture because it is dark, but it also has its own beauty. If you look closely you can see it. Nick wanted to be buried under a tree. This is the kind of tree I picture. He is not buried under a tree. His ashes are with me. I don't know when I will be able to let him go. Maybe in the spring. Maybe never.

Every day I miss Nick more than words can express. The pain never goes away. I might not be thinking about it for a brief stretch of time, but, it never goes away. I am fully convinced it never will. I cry every day...random thoughts, visions, pictures, music, stories, will send me straight to my dark place and my heart will hurt so much. I feel like I will never fill this void, no matter how hard I try. I don't really want to fill it.
I WANT MY SON BACK. I am still retreating. I don't want this reality that I must face every single freaking day. I continue to go through each day as I guess I must. I don't want to do anything. I want to lay in my bed and drown in my own sorrow, but, then I might get accused of not "allowing my grief to change." God for-effing-bid that I should get stuck in some crazy phase of grief, like a needle sticking on a record and scarily repeating over and over until everyone gets so fricking sick of it that they tear the needle off the record player and break the record into a thousand pieces. Did I mention I WANT MY SON BACK!" I want to be happy again, I want to look forward to watching his life unfold. I want to see him get married and have kids and live his life. I want to see everything he is going to do with all that good humor and intelligence. I want to see him teasing his sister and rough housing with his Dad. I want to be able to look forward to the upcoming holidays instead of DREADING them. I don't want memories, I WANT NICK TO COME HOME. I want to wake up in the morning and not have my first thought be that my son is still gone. I want to walk by his room and see his smiling, not the box filled with his ashes. Can anyone out there imagine that kind of pain? I hope you never have to know.

I remember the time right after his BMT when I had to go in and give him his medicine in his IV and I think about how he always told me he loved me and thanked me for taking such good care of him and then I just cry and cry. I miss him so much. I just want to go back. I want a re-do and I can't have one. I cannot accept that. I cannot fathom my world without him. I still feel like a zombie. Went for a stress test the other day...chest pain. Back in a hospital, sitting there waiting, memories of my time spent with Nick flooding back...wheelchairs with oxygen, hospital beds rolling down hallways with patients buried up to their ears in equipment; holding back the tears until I can get to my car. Stress test was normal. Really? Hey, that's great, don't give a crap anyway. I guess the scanners don't pick up on hearts with big holes in them.

I said to my soul be still, and wait without hope;
For hope would be hope of the wrong thing; wait without love,
For love would be love of the the wrong thing; there is yet faith.
But the faith, and the love, and the hope are all in the waiting.
Wait without thought, for you are not ready for thought:
For the darkness shall be the light, and the stillness the dancing. ~T.S. Elliot

Swim Out Past The Longing So Deep

It matters nothing what they did to you
The storm is over, the wreckage through
Leave them in your wake, no more for you to take
Be like the sea

If it hurts your heart, cast it up on the shore
Let it go forever, ceart go leor
Wash away the sorrow, the tears of no tomorrow
Be like the sea

The sea, the sea, dive with me
We'll lose these rags we're wearing and be
Like the sea, the sea, wild and free
We'll swim out past the longing so deep

Down below these waves in the deepest depth
There are echoes sounding true as your breath
The still, small voice in you, the endless open blue
Be like the sea

Go on forever, shine out in the sun
The full a tá sé everyone
Dance yourself around, give up the small ground
Be like the sea

The sea, the sea, dive with me
We'll lose these rags we're wearing and be
Like the sea, the sea, wild and free
We'll swim out past the longing so deep
Away out past the longing so deep

Dark Place

Let me explain.
This is not me you see.
My body has fallen to the ground.
Do you see me there?
The pain overwhelms and I want to hide from eyes that cannot see.
As I lie here on the cold ground, I wonder how it will feel tomorrow, next week, next month, next year...how it will feel forever?
Stuck between mind-numbing shock and overwhelming sadness.
I cannot find the energy to get up.
Staring into space, caught in a web of unending grief, helpless to move forward.
Only wanting to go back.
Back to my son's smile, his laughter, his bright eyes, and his gentle soul.
Back to the days when he was healthy and strong.
Back to a time before time stopped and I was set adrift alone and afraid.
Still lying lifeless on the ground.
What will I do now?
It is a ghost you see walking around in my shoes.
She is not me.
She is going through the motions.
Don't think she is "over it."
She is just marking time until the next
nauseating wave of loss washes over her.
Hurry home.
Find a safe place to release all the pain in a flood of tears.
Am I still lying on the ground by the dark house with the gloomy sky?
Yes.

"We can see the smoke of a burning home,
but who can know of a burning heart." ~Malay saying

"The passions of the heart are not always visible, particularly when we are suffering a severe loss. Survivors often say they wish they could wear a sign or a badge to signal to other people how damaged they feel. Grief is isolating and it is deceptive. Sometimes a person who seems perfectly fine on the outside is going through extraordinary inner torment day after day, hour after slow hour."

Excerpt from the book "A Time To Grieve - Meditations For Healing After The Death Of A Loved One" by Carol Straudacher

My Brightest Diamond - Inside a Boy

In my dreams, Nick lives. In my dreams, Nick escapes from the evil kingdom with his life intact and we all live happily ever after.

Come To My Window

Oh my little bird, where did you go?

I miss your sweet song.

You don’t come to my window anymore.

I remember your eyes on the day you died.

They pierced my heart like a knife.

I am so sorry my son.

I did all that I could.

Why are you gone? Where did you go?

I am still searching for you.

Where are you my son?

I need to find the beauty that was you.

Good night my sweet son.

I hope the sadness has flown from your eyes.

The Bag of Clothes

Here are my babies in the craziest assortment of mismatched PJ's, robes, and slippers I have ever seen. No one can say these kids didn't get their taste in clothing from their Mom! This was a Christmas morning from back in the day. Nick and Sara are both lying on these crazy "Pillow People" that they got for Christmas. I wish it was a better photo, so you could see their smiling faces. Such happy times. I continue to struggle with my grief and feelings of loss. I miss Nick so much I cannot put it into words that anyone will understand. I go into Nick's bedroom every night to say goodnight and I cannot help but cry. This is where Nick rests...on his bed. Instead of my beautiful son, it is the harsh reality of a box cremated ashes, surrounded by so many things that remind me of my beautiful boy. I look around his room at all the pictures, his clothes, his shoes, his books, his toothbrush, his art work, the rosary that he held in his hands every night at the hospital, the last book he was reading, his magazines, his cell phone, his hats, his prayer shawl, and it is not long before the sadness and pain of this loss overwhelms me. Last night as I turned to leave his bed, I look down to find a bag of clothing that has never been unpacked from Nick's time in the hospital. This sighting brings a fresh flood of tears. It is not about the clothes, but, what the clothes represent and this is how I begin to wonder if I am losing my mind, when a bag of clothing can bring me to tears.

For the most part whenever Nick went into the hospital, he always would wear his own PJ pants, boxers, and a T-shirt. He steadfastly refused to put on the standard issue patient gown. Nick tried so hard to hang onto every shred of normalcy he could, especially when it came to time to be in the hospital. This was the case every time Nick was in the hospital, which unfortunately, was way more frequently than we ever could have imagined. During Nick's last admission though, this changed. Somewhere along the way, Nick ended up in a patient gown and that was the last time he ever had clothes on again, until the day he died. It was so unlike Nick to willingly wear those gowns. It was almost as if he was admitting he was too sick to fight with his clothes, at least at that point in time and he was so tired of battling for every breath. It felt like the first of many battles we would lose during that admission. It was the first of many times that tiny voice in your head starts talking and won't shut up and the tiny alarm bells start going off.

It is funny how our clothing equates to being well, being able to go out onto the streets and be "normal." You certainly can't go running about downtown Baltimore in a patient gown without getting noticed for all the wrong reasons. There is a certain hierarchy of patients at the Weinberg, if you are wearing your own clothes you are doing much better than someone who is wearing a patient gown. Therefore, I always kept Nick's clothing there for him, so that when he was ready he could have his PJ's and his T-shirts to put back on and he could rejoin the ranks of those who were doing "better." Whenever Nick got admitted, I always kept the clothing he came in with there as well, somewhat superstitious and ridiculous, but, that's what we did. His khaki's, belt, and usually a button-down shirt were always at the ready, so that we could make a quick exit as soon as Nick was able to "go home." Oh how we wanted him to come home. Oh how I wished for the day he would put on those clothes and return home where he belonged at last. Nick never got well enough to put any of those clothes back on and the thought of it breaks my heart. Packing up those clothes to take home without my son in them...well, words cannot express how horrible that whole experience was and still remains to this day.

Nick's khaki's, his belt (much needed to hold up the pants on his poor emaciated frame), and his button down shirt, sit on his bed. Sometimes it comforts me to lie on them while I cry and cry. I want my son to be back in those clothes and standing there in front of me, waiting to give me a hug. When I saw that bag on the side of his bed, with his boxers, and his PJ bottoms, and his T-shirts, and the hoodie Kate and her parent's got for him so he could take laps and stay warm....well I just sobbed and felt my heart breaking all over again. On June 5th, I took Nick down to the hospital and he never returned home. He spent seventy days in the hospital and I never again got to see him back in his own bed, in his own PJ's, where I could make sure he was safe, hug his neck, give him a kiss and wish for him to have sweet dreams. Despite all that I did, I could not keep my son safe. My love was not enough and that is a bitter pill to swallow. I pray that Nick will forgive me. I love you my son. Please come home soon. I want to hug your neck.

Here is a poem written by a mother, Madelaine Perri Kasden, who lost her son, it is called "Sleepwalking."

Some nights I feel compelled to sleep in your bed.
Your pajamas are just as you left them, next to your pillow.
I haven't laundered them;
You had worn them only once before you died.
At first I believed that if I left your pajamas on your bed,
folded neatly,
You would come home and put them on.
Some nights, I could swear that you are home.
I breathlessly approach the doorway to your room,
half expecting, half hoping to find you there.
I am always disappointed.
I lie down on your bed, weeping silently,
filling the cold sheets with the warmth of life,
even as the warmth of life no longer fills you, my son.