Tears In The Dark

Every day I cry. I miss my boy so much. Every day is a challenge to get through. Every day there is something that brings the weight of this loss down upon me with breath taking clarity. The pain of this sorrow can bring me to my knees on a regular basis. I never know what it might be, but, it is always something. Tonight a band that Nick liked was on TV - G. Love & Special Sauce. The other night I went to get something to eat with Glenn and Barbara. The meal was good and uneventful, nothing fancy. On the way home in the car, by myself, I just suddenly started crying, because I felt so guilty that I had gone out to do something and poor Nick will never be able to do anything ever again. Tomorrow night will be the first episodes of The Amazing Race and Brothers & Sisters. Nick would watch them with me most Sunday nights. Now when I see the commercials for the show, I just want to cry. My sweet son won't be here to watch with me anymore. I try to remember where we were when we watched the last episodes of the season. I think Nick was in the hospital and it makes me so sad. I remember a few times when he was actually at home and he would lay his bald head on my lap and let me give him hugs and just be close. I will never get to do that ever again. I miss his voice, his physical presence, his quirky smile, his intelligence, so many things. The other day I found a comic strip that he really liked called Pearls Before Swine. The comic was particularly funny and made me laugh.

Last week I had my first dream of Nick. I saw him clearly and when I woke up I was upset because I didn't realize I was dreaming about Nick until I woke up and then it was too late for me to enjoy seeing him. I do remember that he was in his regular clothes and we weren't in the hospital. I remember thinking to myself, Oh wow, Nick is not hooked up to any machines or anything, so now we can have a real hug and snuggle. When Nick was in the hospital the last admission, he always wanted someone to come and be close, give him hugs, and hang out with him in the bed. He wasn't well enough to be up in a chair, so we came to him, whether it was Mom or Dad, Sara or Kate. While Nick loved to be out and about and spent most of his time doing just that when he was well, he was still a homebody and he loved to be around his family. In my dream, I got another snuggle. I hope I get some more. Dreams of Nick are bittersweet, I can see him but dreams are not enough. I want my boy back. I want to wake up from this nightmare and have someone tell me it was all a hoax.

I have gotten some books about losing an adult child. I have started one and I find myself saying "Yes, yes, I am not crazy." It is so good to know that what I am experiencing is not unusual, absurd, or crazy. I sometimes feel like I am losing my mind. I have lost my son and that is enough. I never thought I would be in this position, where there are so few people around me who actually know what this feels like...this grief business is hard work and I feel like the best course of action right now is to isolate myself from everyone because I cannot make them understand. I cannot make them read books and learn about what I am going through. So all I can do is find my own way right now. I know there are so many out there who will spend time me with me when I'm ready. I really need someone who will just listen to me tell my story, Nick's story over and over again until the pain stops. This is the only way I know to keep him with me. I cannot bear to let him go and I will do what I must to keep him with me forever.

Loneliest Light The Night

Thought this was a fitting picture to let everyone know that some of us will be walking in the Leukemia and Lymphoma Society's, "Light The Night" walk again this year. At first, I didn't really want to do it. My heart is not in anything these days. But, I have changed my mind and now I am committed. We are going to do the walk in Ocean City this year on Saturday, October 24th. I like this picture since it reminds me of the ocean and lighting the night sky. The name of our team is "Nick's Nanner's." If you click on the link where it says team page you can see a picture of Nick and his gangsta Gma from last year's walk. Nick couldn't walk last year because he was still trying to recover from his BMT. And sadly, Nick won't be walking with us this year, but, I hope many of you will walk or give in his memory. The team name stems from this little story. Sara always used to call Nick a "nannerpus" after the IHOP commercials where they show the banana dancing around on a stack of pancakes singing "Nannerpus, nannnerpus." Well don't ask...just go to the team page and donate if you can or join our team and come walk with us. Barbara, Glenn and I will be heading down there. I hope Sara will be coming too. My mom will be walking as she lives down there for six months out of the year. I am hoping for better weather than last year. I'll have some choice words for my son if he doesn't put in a good word to the weather guy up there.

It continues to be a rough time for me. Each week seems to be getting worse instead of better. Reminders of things are everywhere, I cannot escape the memories of the last year and a half. Today in the mail I received the "final autopsy report" from Johns Hopkins. I will not go into it here, but, suffice to say, I cried bitter and sad tears. The report states that his lungs were in very bad condition...duh! But, they are not exactly sure what caused this condition. It was NOT the bronchiolitis obliterans that many thought he had. Dr. Frosty was kind enough to call and talk to me, the only doctor I have seen or talked to since Nick's death. Every moment of every day is a challenge right now for me, for all of us. We are each suspended in our own worlds of grief and loss. We each must take this journey alone. I am filled with despair and I don't know how to turn this around. I feel like I am sinking in quicksand and no one can pull me out.

Colliding On A Backdrop of Blue

"Blue the most human color." I am blue. My world is blue. I miss my boy more than words can say. For now,my world is blue.

The excerpt below was taken from the book “A Broken Heart Still Beats" and was written by one of the authors of the book, Mary Semel. Ms. Semel lost her sixteen year old son, Allie, in a car accident. This is what she wrote at the beginning of Chapter 3, entitled, “A Storm In The Heart: Pain and Despair." The paragraphs below tell it like it feels to me every day.

“I used to wake up eager to start the day. Not anymore, not since Allie was killed. Now I lie in bed as long as I can, pondering the mystery and horror that happened to Allie and us. I’m like a hurt animal licking its wounds in a cave.

Sometimes Allie’s death is the first thought that comes to my mind when I wake up; other times it’s not. Sometimes it comes to me suddenly and sharply, my heart shrieking, “Allie is dead, Allie is dead, Allie is dead.” Sometimes it floats to the surface of my consciousness slowly.

The same thoughts revolve over and over. How can it be? How can my lively sixteen-year old son be gone forever? It makes no sense that this life which I cared for with all my heart and soul was wiped out in one cataclysmic moment. What makes life? Where did it go? What can I do to bring it back? There must be something.

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

My thoughts travel to the future which stretches ahead, a barren vista of grief. What can I do to make my life tolerable after this? Whatever I plan, whatever I do, Allie will always be dead. I will live the rest of my life looking backwards. I cannot bear it to contemplate this for long. So I come back to today. How will I navigate the grief today until I can return to the anesthesia of sleep? And tomorrow I’ll start all over again. Mary”

Lost in grief.

Alone in despair.

Longing to find a way back.

The darkness overwhelms.

A hole in my heart to deep to repair.

~bigD

Dog Days Are Over

I wish my state of mind and my physical body mirrored the serenity of this picture. Alas, I cannot say that this is true at this time. Today has been another long day of sad thoughts, random tears, and thoughts of regret brought on by my foraging through hospital papers and Pollyanna-positive bone marrow transplant literature.

Today I found the packet of info I had received on "How To Select A Transplant Center." In this packet there is data on the many transplant centers across the country, collections of statistics that represent people's lives. Would it have made a difference if we had gone to another center?
I clutched that book in my arms and I just cried. I can't help it. I have regrets. I question the decisions we made. We trusted in a system, in a treatment, in a group of doctors, and we did not get the outcome we wanted. I will forever be full of doubt and "what ifs?" I wish I could just serenely accept what has happened, but, I cannot. I do not enjoy the feeling of powerlessness that I feel right now. As parents we are innately wired to protect our children from danger, to help them, to fix them and keep them ALIVE. Our children are not supposed to die before we do. The order of my universe has been irrevocably disordered and with that come ugly emotions like anger, regret and bitterness. I refuse to be content with that or at peace with it or any other cliche the unsuspecting public wants to throw at it. I feel physically ill. Maybe I am really sick.

I want to share something I wrote a while back. I did not date this and I am not sure when I wrote it. I know when I wrote it I was upset about the goings on at the Hop for one reason or another. I was down and angry because Nick wasn't getting the attention I felt he deserved and here is what I wrote.

"The Old Shoe"

When first you appear on their doorstep
There is quite a buzz and a flurry of activity.
"Oh dear, what can the matter be?"

Everyone scurries about making gestures and postulating.
This sense of urgency is somehow appealing.
"Yes! Yes!" you think as you sit in mind numbing shock at the foot of
your son's hospital bed.

They are doing something.
They are going to figure this out.
They know what they are doing.
They will FIX this.

The thrill of the chase spurs them on.
A mystery to be solved.
Finding the key to unlock a cure!

It seems they like you-
but, that does not stop them from their daily rounds,
their unrelenting pursuit of data and
their inability to treat the whole you and not just the parts that
give blood and require scanning.

In the beginning, hope springs eternal.
No one speaks of the "other possibilities."
"FAILURE IS NOT AN OPTION" blasts from the loudspeakers of the compound.
The guards keep weapons at the ready lest you decide to make a hasty exit from
the depravity that surrounds you.

Later...much later.
You become the old shoe.
We've really done everything we know how to do.
You are a testament to our failure.
We can no longer look you in the eye when we speak.

We tortured you beyond the point of no return.
You are now a shell of your former self.
You are damaged goods, beyond repair.
We have no more magic to weave on your behalf.
Unless you make us stop, we will keep on because
we don't know how to let go.

Not so much because we care.
Mainly because we don't know what else to do.
For if we stop there will be silence,
and in the absence of noise
we will have nothing to say that will ease your burden, lighten your heart,
or save you from an untimely demise.
And that my friend would be quite awkward.

Look Before You Leap

This post contains random thoughts in random order with random emotions experienced by a grieving mother. This is your only warning.

Nick's 27th birthday has passed.
He will be forever twenty-six.
Nick's memorial is over.
Life goes on.
Life sucks.
The loss hits like a cold, bitter wind.
It takes my breath away and I cannot breathe.
I am numb with the cold.
I will never be warm again.

My mind is scattered and thoughts come and go in random patterns that make no sense. I forget things. I lose things. I cannot sleep. I am up all night because when I go to lie down I cannot stop thinking about Nick in the hospital and how horrible it was and then I start crying and I can't get the thoughts out of my head. I wonder when I will be able to go to bed and not cry.

The memorial was beautiful. I know Nick would approve. It doesn't help. I am glad it is over and I am sad it is over at the same time. Now that it is over, it feels like everyone will carry on. What else can be done? I hear that little bell sound from the Southwest Airline commercials and I hear a voice saying, "You are now free to move on with your lives." Well my life doesn't feel like moving on right now and I don't understand how anyone can.

I go into Nick's room every night. I stand by his bed. I rest my hand on his remains. I am still in a state of shock that this is really happening. I stare at his clothes. I look around his room and think about when was that last time he was actually in his bed. The last time he slept in his bed was in MAY!! I think about when he first came home from his BMT and then when he was in IPOP and he got sick. And he had to get IV antibiotics at home. I think about how I would go into his room for his 2AM dose and how he would thank me for taking care of him and tell me how much he loved me.

The clock on his desk blinks random numbers. (At some point the power must have gone out and it never got reset because Nick was never back in his room!) Every time I see that clock blinking it reminds of the fact that for Nick there is no more time. There is no future. Time for Nick has STOPPED!!! It seems like time has stopped for me too. I feel so sad and so old. This has taken a toll. I don't know if I will be able to turn this around.

I was reading Nick's facebook. I read his words and I just cry. I can hear him say the words. They are so my Nick. I want to hear his voice again. I don't want to turn off his cell phone, because this is the only way I can hear his voice ever again. I found the results of a survey he took. "What Grateful Dead song are you?" His song was "Ripple." And then this description,

"You are quiet contemplation. Even in crowds you are an island of peace and solitude. Wise beyond your years and never impetuous, you think everything through and are usually steps ahead of any situation you come across. People look up to you for your wisdom and often come to you for advice and spiritual guidance." Wow...right on FB quiz. You hit that nail right on the head. Nick please help your old Mama...I need your wisdom right now.

Today, I was so busy doing stuff I don't want to do. I just want to stay in my house right now and try to get my life back in order. I am under the mistaken impression that if I get my shit organized I will somehow be able to deal with this ungodly mishap of life. I know there is no amount of organizing or cleaning that will take this pain away. But, by God, I'll sure as hell die trying. As I drove home, it hit me again (as it often does, out of the blue and without warning) Nick is not here anymore. NICK IS GONE! And then a huge wave of sadness hits and then the tears begin again.

Today Glenn found a box turtle in the street. He took it to the school. I joke (morbidly)..."Oh, that's Nick." Glenn tells me about a toad that got squished in the driveway. I joke (dark humor)..."Oh, that was Nick." I don't believe in that sort of thing. I am tired of hearing how Nick is talking to everyone else but me. He talks to this one and visits that one and tells stories to the other one and I am sorely hurting every time I hear one of these stories. Why doesn't he come and see me? Why doesn't he come to see his Mom? (These are rhetorical questions! Please don't answer them!!!!!!)

When Nick got sick I bought some cards. The cards were full of hope and positive thoughts that mirrored our hope and our dream that Nick would beat this leukemia, that he would survive the "cures" of medical science and emerge unscathed by the myriad of horrible side effects and complications of a BMT. This particular card I never got around to giving him. It read, "Leap and the net will appear." It serves as a cruel reminder that our net had a huge hole in it...if we ever had a net at all. Nick lept, he had faith, he trusted his cape and look where it got us...squished on the pavement of life.

One Day Closer

Two days before what would have been Nick's twenty-seventh birthday. I am so sad that no matter what we did, we could not make him better so he could be celebrating this birthday with all of the family and friends that will be gathering instead to celebrate his short time here on this earth. Nick had so much to give and so much more living to do. All he wanted was to be "better." He did everything he did with that goal in mind. He would always say, "If this is what I have to do to get better, then I will do it."

I have a notebook of his. This is where he wrote down a lot of his passwords for his bank accounts and other such stuff, "just in case." When I opened this notebook for the first time on the very first page Nick had written "2008 Goals." There I find his handwriting (which I treasure) and the lists of goals and projects...plans for the future. A future that is now lost. The list just really sums up so much about Nick. He was a planner to some extent and yet he could really go with the flow. He liked to organize his thoughts and get the ideas flowing and down on paper for later perusal. His goals included work and play, health and budget. Some goals were big, like the house he wanted to design and build. Some were simple like "practice calligraphy." Oh my God, how this breaks my heart and makes me cry every time I read these concrete reflections of Nick's awesomeness. How much money to save and hobbies he wanted to pursue like cooking. He had some plans of what kind of exercise he might want to start doing. He also included ways to "enrich" his life with learning, like a goal to read "1 book per month, 3 magazines per month, and translate 2 speeches per month." I don't know when in 2008 he wrote these goals, there is no specific date, all I know is those goals will never be met. All of his dreams and my dreams for him have been laid to waste; shattered into a million pieces. Pieces that pierce my broken heart and cause so much pain.

When he was home in May, he must have started a to do list, for that is in here too. It is dated May 8th, 2009. I guess he got that trait from his Mama. Such mundane tasks are listed there, but, to him they were a big deal...to be able to accomplish even the simplest of day-to-day jobs. Things like "file bills" and "budget 09." You see even then, he believed, we BOTH believed, we ALL believed, he would beat this thing. We all wanted this so badly!! And then later that month, near the end of his three weeks home there is this poem he wrote. Torn between the reality of lungs that seemed to be getting worse each day and dreams that wanted to believe and keep on living. Keep on fighting...oh, my Nick, I wish I could have helped you more. I wish that "To Do List" had more fun things on it. I wish we knew that this is where we were going...how would we have done things differently? How could I have made your last days happier and more peaceful? I love you my son. Am I selfish to want you to still be here with me? I pray you are at peace and doing all the things you love. Do you like that tree? I think of you when I see big, beautiful trees like this one. I think of you reaching to the heavens and offering your branches to the birds. I try to think of you as returning to the earth and a world that I know nothing about. I pray you are surrounded by so many who love you, wherever you are hanging out. Here is Nick's poem written on May 28th, 2009.

Broken
Physically beat down
With your ass dragging
your mind starts to follow
Spirits stay strong
for a while
But each day
is a little harder
a little more short of breath
one day
closer
This disease is trying to break me
But I will prevail
Because I will never give in.

You NEVER gave in Nick. I know that you NEVER wanted this to be the way this ended. You were never going "gently into this good night" ...you fought and you gave it EVERYTHING you had. You were a most courageous and fearless warrior in this battle for life. You always chose life. I love you more than a wagon full of puppies. Mom

The Other Side

Overwhelmed with everything. No patience for anything. Spending hours and hours of time preparing, trying to get things right. Spent hours last night crying with Glenn over our poor, dear, lost son. The pain never stops. The tears finally did. Then I went to his room to look for things to put on his memorial table...found the Christmas cards I gave him last year. He had saved them. Cue the tears. Why does it hurt so much? I hope Nick is kicking back on a beach some where. Please come see me my sweet boy...I miss you so much. We all miss you so much. I love you always and forever. Mom.

Lost

Moving through each day.
New terms for a new reality.
I will never see my son again.
Emotions are a wiley and evil bunch.
One moment hiding away and the next leaping upon me like a lion from a tree.
Hating every moment of every day that I must take another breath in a world without my son in it.
The wound is deep and the pain comes sharp and without warning.
I am not "OK."
I am bitter and angry and tired and full of such a sadness as I have never known existed.
Every day there are more reminders of the cruelty of this loss.
Memories are a bitter substitute for the vibrant soul that was Nickolas.
Every night I go into Nick's room and mourn for my sweet first born son.
I cry for his father and his sister and all those whose lives and hearts were shattered the day he left this world.
I just want him to come home.
I sometimes feel like I am losing my mind, for surely, my heart has already been lost.

A Broken Heart Still Beats

Years ago I purchased a book. I am not sure what drew me to this book. I guess I was hoping to gain insight into what the parents of my patients were experiencing when they lost their precious child. Well, hey, now I know first hand what it feels like. And it really sucks! The title of the book always hits me hard and now as if fate proclaimed it, I can live it as well. The title of the book is "A Broken Heart Still Beats." Truer words were never spoken. This book is a compilation of stories and poetry written by parents who have experienced the loss of a child. They are quite heart wrenching, but, they surely speak to me now. So when the spirit moves me, I am going to post some excerpts from this book, because it says what I am feeling better than I can say it. It helps me know that everything I am going through has been experienced by other unfortunate souls who have had to lose a child to join this "broken hearts" club. The words below came from the book and were written by Gordon Livingston, a psychiatrist, who lost two of his sons - one to suicide, the other to leukemia. The following is taken from the journal he began keeping when the family was given six-year old Lucas's cancer diagnosis.

"May 29, 1992 (ten days after Lucas's death):
...the pictures in my mind of Lucas dying will give me no rest. How can I erase, or at least soften, these images and remember him as he was in health, his sweet face, happy smile? How could they have put him and us through those changes? I never felt warned about those possibilities in the dry words of the "informed consents." What is the process now other than waiting for time to pass? Should I try to get back to work next week Would it help to travel far away or will I just miss him in as different place? I need some faith in God, but where was He when we needed him, when so many were praying on our behalf? I feel old, as if I have lived too long, seen too much, suffered beyond any hope of redemption. I am empty, barely capable of loving those who need me...and the world goes on as if nothing has happened. I don't want to be a part of it...."

There is so much more from this same fellow. His words shoot straight to the heart of the matter.

"June 17, 1992
The loss of my son has brought me to the edge of an abyss. I stare into it and see only darkness. I told Clare tonight that "I think about him all the time, don't you?" The answer, of course, was yes, and we both began to cry. I said something about being sure he was all right. She said, "I hope so...I just want him back." I start to tell her how sorry I am, but she knows that and I can't even think the words without remembering Emily (Lucas's sister) at his bedside when he died: "I'm so sorry, Luke. I'm so sorry." I don't see how I'm going to get past this."

"February 10, 1993
...Sometimes at night I think about driving to the airport, getting into the airplane, and flying west at one thousand feet n the darkness, until I meet the mountains. I could not, of course, inflict that upon my family, but the idea that I might thereby join Lucas fills me with anticipation. I have had patients who have lost children and told me of a wish to follow them. Now I understand."

And finally, almost fifteen months after his son's death, Mr. Livingston writes:

"August 23, 1993
...Memory burdens me like an anchor I cannot raise. It was not always so. My few earthly attachments allowed me to move through the present without fear on the way to a future that held, I imagined, some perfect combination of peace and excitement. That is gone now. I am weighted by the past and advance only haltingly and with great effort toward whatever time is left-full of obligation, but without promise of the joy I so freely savored."

I have no doubt I will feel the same no matter what measure of time has elapsed. I only hope I am able to find a way to make it hurt less. I love you Nickolas, you will always be my best boy in the whole wide world. I love you more than a wagon full of puppies. Mom