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.

Holding Out For A Hero

“You don't raise heroes, you raise sons. And if you treat them like sons, they'll turn out to be heroes, even if it's just in your own eyes.” ~Walter Shirra, Jr.

“The beauty of the soul shines out when a man bears with composure one heavy mischance after another, not because he does not feel them, but because he is a man of high and heroic temper”~Aristotle

“A hero is no braver than an ordinary man, but he is braver five minutes longer." ~Ralph Waldo Emerson

Super Pierce

This little guy is Pierce Phillips. After a fourteen month long battle with a form of pediatric cancer called neuroblastoma, Pierce earned his angel wings on October 9, 2009. My heart breaks for his parents Scott and Brandi. I just found out about Pierce via Ally's CaringBridge journal. Reading all that this family has been through, it hits home really hard. Pierce sounds like a little version of Nick...they were both fighters, they both took each day as it came and they both loved life and their families so much. The journal entries by Scott and Brandi are just so touching and beautiful, they loved their little boy and they too had to make a choice to let him go and be at peace. I hope Nickolas and Pierce find each other and head off on some new adventures. Maybe Nick can take Pierce for some car rides and I bet there is a puppy in the back seat ready to go for a run when they get to the park. Someone left this poem in Pierce's guestbook. You can read about Super Pierce here.

I know your names
You were here for hours, days, months or years
Too young to die
Too young to leave your parents, who will never be the same
Your names are written on their lives forever
They will remember your birthdays, with "if only" and "would have been"
They will count the years and measure you by your friends
They will mourn your graduations, ball games and marriages
They will hold you in their dreams
They will cradle your teddies and sleep with your blankets
They yearn for the scent of you, long gone from your clothes
They will walk into your darkened rooms and hope that tonight you will be there
They fear they may forget your faces, your smiles, your voices
They hold onto the grief that binds their love to you
They will remember the insidious unknowns that stole your breath, stopped your beating hearts
They will relive your last days, last touches, and last breaths
And rewind them again and again until they are tight in their mind’s eyes
I weep for your mothers, your fathers, your grandparents, your siblings, your friends
And all those who will never know you
And when time silences the voice of solace
I will say your names and remember

Deep Hurt

Today marks two months since Nick was removed from his life support and left us here to mourn his death. It seems like an eternity ago and yet, it seems like just yesterday. That day is forever etched in my memory and brings me such heartache and sadness. My heart aches for my beautiful son every day. It seems like I will feel this grief forever. My eyes never stop crying like the rain from dark, dark clouds. Every night I sit with my son's ashes and I wish this nightmare I am living was not real. I am sad. I am angry. I am exhausted and yet I cannot sleep. My emotions swing like a pendulum between zombie-like numbness and emotional zealotry. I read the pain of others going through similar losses and I feel my own pain in their stories. Apparently, the devastation of this kind of loss has universal parallels regardless of the reason for the death or the age of the child. I never wanted to join this group of people struggling to hang on to their sanity through the fog of unbearable grief and loss. I don't blame those who have decided to get off this ride. Working through grief is painful and necessary work. It is physically and emotionally exhausting. For some the pain never stops. This carousel of the damned will go round and round forever.

Grief Haiku #1 -

Did you know blind faith
might very well get you killed?
Open your damn eyes!

Grief Haiku #2 -

Self-medicating
seems like a good idea.
Pain score is still ten.

He's My Son

This is the problem with being the Mama Bear...you remember your children all the way back when they were just swimming around in your belly. And you remember what it felt like when you got kicked in the belly from the inside and the joy of having that life inside of you. You remember the feeling of having another persons life in your womb and with that comes such love; love that grows deeper with every day that passes, just as that baby grows under your heart. The anticipation of the birth of your first child cannot be described. The day that Nickolas arrived was such a joyous and wonderful occasion. Even eighteen hours of "natural" childbirth and a C-section could not take away the happiness I felt when I held my son in my arms for the first time. How does a tie like that become severed? How does that love ever stop? How does a mother learn to live without that child that grew inside of her and came from her body. I wish I knew the answer to that question. Right now, it feels so horrible not having my son here with me on this earth. I am still in shock and I still have moments, every day, when I cannot believe that I will never see my son again. The poem, "The Cord," hit the nail right on the head. And yes, the cord is still there and yes it pulls at my heart, and yes, I am bruised. All I want to do is find that cord and follow it back to my son.

I am reading this book called, "A Time To Grieve." It talks about three phases of grief. The first phase is called "retreating," where those who have lost a loved one will experience "disbelief, shock, confusion, and disorientation, as well as a number of other reactions." Damn straight I am retreating! I am trying to run as fast as I can in the opposite direction of having to deal with the reality of this loss. I don't want to accept that Nickolas is gone forever. I don't want to deal with the reality that he died a horrible, horrible death and he didn't deserve any of it. None of us did. My son did not deserve to die and I am very angry about that. Why shouldn't I be? I am angry at all the usual suspects (the doctors, the hospital, the chemicals, the radiation, the understaffed clinic, the genetic mutation that caused all of this in the first place) and GOD is right up there on the top of the list. Now I am not trying to rile up any true believers and I am sure I will be going straight to hell, but, tonight I really don't care. Where was God when Nick needed him? How many prayers are necessary to get the requisite miracle that is needed when one is trying to fix lungs that are beyond repair? Of course, I am angry. Maybe I was not worthy of this miracle, but, my son certainly was worthy of that and so much more. My science based mind really didn't expect one, but, my "I am a desperate mother" mind, really was hoping that "God" would have mercy on me and not take away my only son.

Today on my facebook I put the quote, "Where belief is painful, we are slow to believe." by Ovid. And you can take my word for it this is painful. The book says, "It takes a considerable time for our disbelief to dissolve." In the meantime, us grief-stricken folks sort of wander around in a fog...literally. Our hearing, our vision, our thought processes are all messed up big time. This is a protective mechanism to keep us from jumping off bridges or overdosing on Tylenol.

There is a sense of detachment that comes with this distorted perception of the world around us. It is like being forced to open a door when you know there is something bad behind it. Your mind tries to protect you until your are ready. You know you must eventually open it. It is the only way out of this place. But, you have to work up to it slowly. The ability to open that door and accept what is lurking behind it takes a looonnngggg time. How long? Well, that's any one's guess.

This book also deals with the issues of sneak attacks, or put in other words, "when the fact of our loved one's death is made painfully evident." Here is how one person, grieving the loss of a loved one, described their experience with sneak attacks and how they learned how to deal with them. "When I feel the stunning blow of disbelief, I will go to a place where I feel comfortable and rest for a moment or take a short walk until the shock dissipates....I will allow a "loving hesitation" in my life - a pause that lets me gather my physical and emotional energy --so that I can meet at least some of the day's minimal demands. I won't try to meet the big ones, only those that are small enough to manage." And thus that is what I do each day. Try to figure out what I can manage. And when I have reached the limit, I retreat.

Just a note on the newest addition to my playlist. I love this song. It makes me cry. It makes me think about how we love our children as our babies no matter what age they are. It seems I needed this song before Nick died. Did God not hear our prayers? Did he not see how much Nick was suffering? Did he not see how tired his Mama was? Did he not know that I would have taken care of him forever, no matter what? Mark Shultz is a wonderful writer and I love his voice. Also, the way I found this song was from the CaringBridge page of a little boy who is fighting a courageous battle against a blood cancer called hemophagocytic lymphohistiocytosis or HLH for short. There is a YouTube video of this little guy that shows how he has been battling this cancer almost since the day he was born. He has already had a bone marrow transplant and he is one courageous little dude. His name is Brayton. This song was playing on the video. I have also been reading another CaringBridge journal of another little girl who has the same diagnosis. Her name is Ally. She is currently down at Johns Hopkins and has been having a really rough go. She also had to have a BMT. If you would like to read the stories of these brave little soldiers in the war against cancer, I will post links to their pages below. Even though I am often wrapped up in my own little pity party, I never forget that there are people suffering and grieving that need our help, our support, and yes, even our prayers. Perhaps, those prayers can help these young fighters and their parents to pull through and make a full recovery. To check out the journals, click here. Brayton and Ally. Peace and love to all.

Eet, Eat, Eet

The book I'm reading right now is by a father who lost his nineteen year old son. When he speaks of his grief, he speaks of "sneak attacks." A sneak attack is when something or someone reminds you again of your loss and it feels like an attack. The sorrow washes over you and the tears begin anew. You thought you had it together for a minute, or an hour, or half of a day, and then a sneak attack appears out of nowhere. It finds you when you are defenseless and takes you completely off guard. It is not pleasant. I want to run away and hide in order to protect myself from another emotional onslaught, from feeling that loss over and over again, but, I cannot. In a way I guess I have come to accept that these attacks will continue forever, perhaps how I react to them will change with time. But, right now, they are painful, because they remind me of everything I have lost with the death of my beautiful and wonderful son. When these attacks happen I feel so overwhelmed with sadness and shock that I am going through another episode of this emotional turmoil. I don't know that I will ever get used to them.

The other day in a waiting room, I picked up a copy of "Baltimore" magazine. On the cover was a big heaping stack of blueberry pancakes. I am a breakfast person and those pancakes looked so good. The article was about some of the top places in Baltimore to get a good breakfast. Those pancakes turned out to be from Miss Shirley's, a restaurant that Nick had told me about and cajoled me into going there for breakfast. Of course, I loved it and we had a great time. Nick and I had been planning to go back to Miss Shirley's as soon as he was better. We had a big celebration planned that would include family and friends. Now that stack of pancakes just reminds me of all the places Nick and I will never go to together ever again.

There were other places listed in the article that I know Nick would love to visit and chow down. The whole issue of food in general makes me sad and want to cry. The whole time Nick was sick he did nothing but lose weight. We all tried so hard to make sure he got the proper nutrition and he loved to eat for the most part. But, his illness fought against him and no matter what we did or what we tried he continued to lose weight to the point of being so malnourished and emaciated, it broke my heart every day. For the last month of his life, Nick could not eat anything unless it was through a feeding tube. Memories of what he liked to eat and the foods he loved to enjoy haunt me all the time. In the article, I read that one of the places served Zeke's coffee.

Nick loved Zeke's coffee. When he was in the hospital, they started to let him order food from the fancy Marburg menu. Usually you can only get this menu if you pay extra for every meal. Well Nick was so thin and they just wanted him to eat, so I guess someone approved him to get these meals. Anyway, the food comes like room service and you get real china and silverware and the food was actually good. I always remember Nick with his china coffee cup, drinking his coffee with just a touch of cream and a touch of sugar. He would sip his coffee, eat his breakfast (what he could eat) and read the paper. He would keep the coffee cup and the thermos of coffee all day, just in case he wanted to have some later.

Before they started letting him have the Marburg food, we would always bring him food from home or buy carry-out food that he really liked, like Five Guys burgers or Chinese food. One thing he loved was his Dad's turkey stuffing. Now every time we have stuffing at home, I just cry and cry. The same thing goes every time I see the Caranation Instant Breakfast I would use to make him shakes...sneak attack.

Yesterday, I was cleaning out some Orioles stuff in my room. (Cleaning and pitching my stuff has become therapeutic in some way.) So what do I find? An old Orioles score card that Nick must have written when he was pretty young. He had written in the names of all the players and his printing was very "young." I just thought to myself, he will never get to go to another game or keep another scorecard. Then later, Glenn and I were listening to the O's game on the radio on the way to the store and Markakis hit a home run. It made me think of Nick when he was in the hospital this last time. We would always have the game on TV or on the radio, but, because of the trach and vent he couldn't cheer out loud, so he would raise his arm and cheer by pumping his fist in the air. Even if we weren't paying attention, we always knew the O's just did something right when Nick started pumping that arm. At first, I did the same motion and I said to Glenn, "That's what Nick would do." But then the tears just came as all the sadness came rushing back in the blink of an eye...sneak attack!

Later Sunday night, I had to go up into the attic to get something and another sneak attack happened. What was the first thing I saw? Nick's radiation form which is in the shape of his full head. I just started crying so hard. I put my hands on that form and it felt just like I was holding Nick's head. I used to put my hands on his head or hug his neck a lot when he was in the hospital bed, because that was about all I could do. I just want to be able to hold him again, touch his head full of hair and tell him how much I love him. God, how I miss him.

Whirled Green Tomatoes

Spinning out of control
Yet standing still.
Days go by,
The shock continues on.
"Try to stay busy."
Advice freely given by those who have not lost their only beautiful, first-born son.
"Busy" only numbs the pain.
A temporary fix that lulls me into a false sense of calm.
Feeling trapped in a life that I don't want to live
without my son in it.
Questions and regret chase through my brain the moment my head hits the pillow at night.
Sleeping never used to be this difficult.
When the whirling stops the sadness floods in, drowning me in the sorrow of my loss.

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.