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.