Lost Spirit

Missing you.
Memories haunt.
Broken hearted
Spirit lost.
Bone tired
Tears flow.
Painfully watching
Time pass
Without you.

Every night when I go to bed, I hope that I may never wake again, and every morning renews my grief. ~Franz Schubert

My Heart's Best Treasure

Surprised by joy - impatient as the wind

Surprised by joy – impatient as the wind
I turned to share the transport – Oh! With whom
But thee, long buried in the silent tomb,
That spot which no vicissitude can find?
Love, faithful love, recalled thee to my mind –
But how could I forget thee? - Through what power,
Even for the least division of an hour,
Have I been so beguiled as to be blind
To my most grievous loss? – That thought's return
Was the worse pang that sorrow ever bore,
Save one, one only, when I stood forlorn,
Knowing my heart's best treasure was no more;
That neither present time nor years unborn
Could to my sight that heavenly face restore.

This sonnet was written by William Wordsworth after the death of his three-year old daughter, Catherine. Edurne Scott wrote the following analysis of Wordsworth's poem, "the poem highlights how the mind remembers the dead, how thoughts keep those that have died alive, and how these thoughts inevitably make one have to confront death time and time again. In this way "Surprised by Joy" expresses the double pain and loss of death- not only the death itself but the fact that one can remember a loved one, and the fact that one can only wish that they were there with them in particular moments- in Wordsworth's case in moments of happiness when he is 'surprised by joy' and which has given the poem its title."

“Normal day, let me be aware of the treasure you are. Let me learn from you, love you, bless you before you depart. Let me not pass you by in quest of some rare and perfect tomorrow. Let me hold you while I may, for it may not always be so.” Mary Jean Iron

Still Hurting

It has been eleven months since Nick died. I really cannot even believe it still. Last year on July 13th, 2009, Nickolas has been in the hospital for 39 DAYS! Can anyone believe that? I cannot believe it and I freakin' lived it!!!! As I go through this summer, I think about how last summer basically did not even exist! Whole chunks of my life seem to be missing and I have to constantly do a review in my head..."Oh yeah, last summer I wasn't at the studio. I was at the hospital every day." The summer didn't exist for Nick. His life was the four wall of that f*ckin' hospital room, day in and day out. Now it's one thing if you think there is a purpose to being there, if you think you are going to get better and go home and have a life again. When I look at pictures or read my daily notes of what was going on, I am really wondering how the hell Nickolas was able to endure all the painful procedures, the constant emotional upheaval, the physical deterioration of his body, the loss of his life as he knew it...everything just gone in what seemed like a blink of an eye.

The pain of watching Nick suffer like this was and is still terrible. The only way I can deal with it is to block all thoughts of that time from my mind. I was powerless to protect him or take away his pain. I did what I could, but, it wasn't enough. Even the chance to hold and comfort your child is taken away due to all the tubes and machines and constant interruptions. And when you have an "adult" child it is even worse because they are "grown-up" and they are not supposed to need hugs. They are not supposed to need their Moms. That is one thing I am so glad that I refused to let them take from me...Nick wanted his family close to him. He was always asking for someone to "snuggle" with him. At the end, when he was on the breathing machine, it was so much harder to hold him and give him hugs. All I wanted to do was hold him and make him feel safe and be able to tell him everything was going to be alright. I wanted to be able to bring him home and not let him die in the hospital. Nick hated the hospital and this is one of my deepest regrets about his final days.

On July 13th last year, Nick was subjected to yet ANOTHER bronchoscopy (that showed nothing) and he had the trach tube placed in his neck and the feeding tube placed in his belly. How horrible that on this same date, one month later, Nick would be dead! My poor sweet, beautiful son, gone forever. I cannot imagine how scared you must have been and yet you were so brave. I am so sorry Nick for everything that I couldn't fix. God bless you my sweet boy. My heart was aching all day yesterday. I miss you more than all the stars in the sky. I love you more than a wagon full of puppies. Please come home. Mom

I couldn't bring myself to put a picture of Nick with his trach. It is a very sad, sad picture and it only makes me cry. So I chose a different picture instead.

“Those with the greatest awareness have the greatest nightmares. ~ Mahatma Gandhi

Waiting For Nickolas

This picture made me think of Ernie. It looks like he is waiting for Nickolas to show up on the "other side."

I love you my sweet boy. We all miss you so much every day. My heart is forever broken and I long to see your smiling face. I long to hold your hand and hug you. I would never let you go.

Let your tears come. Let them water your soul. ~Eileen Mayhew

Bleeding Heart

Two days before the fourth of July you finally came off the breathing tube.
That first day was a joy because you were free of the tube down your throat and the breathing machine was gone.
You wanted to eat so badly.
You got your Marburg menu and had all your meals ordered and ready to go.
But, they would not let you eat until you had a test that proved you could swallow.
Even the small joy of eating was taken from you.
Why didn't I just let you eat?
Why didn't I tell them all to go to hell with their stupid rules?
What do they mean now?
Just heartache that I was part of denying you that precious nourishment that you needed so badly.
The next day you did not feel as strong. We waited so long for them to do the test.
By the time they did it, it was so late. You were so exhausted from breathing.
It was easy to forget that ugly beast while you were on the breathing tube.
I don't remember much about the day of July 4th last year.
I just know you were looking forward to watching the fireworks.
I wasn't sure it would happen, but, thanks to some wonderful nurses and respiratory therapists,
it did.
They rolled you in your bed with all the tubes, poles and oxygen over to another room where we could all watch the fireworks together.
You were so quiet.
I was so scared.
I remember sitting beside you and holding your hand.
I remember you did not say much.
Now I wonder, what were you thinking that night?
What were you feeling?
Were you scared too? Were you hungry? Did your belly hurt?
Did you know this would be the last time you would ever see fireworks?
Did you know this would be our last July 4th together?
I don't know what was going through your head or your heart.
July 4th will never be the same; it will always remind me of that time we spent on the fifth floor of the Weinberg building.
As we sat together watching the fireworks exploding and showering the night sky, somehow, the colors were not as brilliant and the joy was bittersweet.
I am so sorry my sweet boy. I miss you with all the pieces of my broken heart.