Monday, March 30, 2009

Beautiful


Everything about you was beautiful; your big eyes, your little mouth, your crazy hair, your infectious laugh, your purple belly button, the scar on your right calf that never lost it's last suture. Everything about you was beautiful. I close my eyes and breath you in. I still remember, Grey.

Saturday, March 28, 2009

Did He Say Texas?


The following link is an interview with Jim and Jill Kelly at last night's Candlelight Ball in NY. Please watch until the very end. It gave me chills and put me in tears. I cannot thank Hunter's Hope enough.


Dearest Grey,

I know the love that you have in Heaven is magnified a gazillion times. But the love people have for you here on Earth has got to be close!

Love,
Forever Your Mom

Thursday, March 26, 2009

#40 (Always)


Tables turned again
And you my friend
You and I face each other
Oh time and time out

I know it's sometimes hard
But knowing just
That we will get along
'Til we're old and gray
And huddled up
We're doubled up, we'll sit

And laugh of times were hard
Laugh of times
When we thought it all would end,
It all it was over

Then again
Know that I am yours this way
And to leave you out, I'll die
Oh my friend
It’ll be you until the end with me always

Always

Tuesday, March 24, 2009

Bath Time


Although I still do not physically see Grey in my dreams, I have started to have dreams about him.


Last night I dreamt that I was at the dinner table with Bill, Luke, Seth, Riley, Mom, and her brother, my Uncle Don. He died nearly 20 years ago, but was a big part of my life when I was young. One of the things I remember most about my Uncle Don was how he could sit at the holiday table and eat FOREVER. I'm sure it wasn't forever, but when you're 5 and waiting for your Christmas pajamas it felt like forever.


Anyways, we're all sitting at the table finishing our dinner and my Uncle Don gets up to leave. I questioned him as to why he was leaving so soon, in my mind knowing that he really shouldn't have been there in the first place and once he left, he would really be gone.


He looked at me and said, "He still expects his bath at 7."


Wow.


Grey was like clockwork with his bath. If we were ever late, he let us know. I woke comforted by the thought that my uncle was now taking care of Grey. It was a good dream, one that filled my eyes with tears as I told Bill and my mom.

Grey In The News

Grey was in today's Herald. The link is below.

http://herald-zeitung.com/story.lasso?ewcd=18882dbe0fb639eb

Sunday, March 22, 2009

The Gap



This is probably the best thing I have found to try to explain how I am feeling. I found it on another Krabbes family's site. To read about their son Jaden, please visit: http://www.savingjaden.com/www.savingjaden.com/Welcome.html



The Gap By: Michael Crenlinsten


The gap between those who have lost children and those who have not is profoundly difficult to bridge. No one, whose children are well and intact, can be expected to understand what parents who have lost children have absorbed and what they bear. Our children come to us through every blade of grass, every crack in the sidewalk, every bowl of breakfast cereal. We seek contact with their atoms, their hairbrush, their toothbrush, their clothing. We reach for what was integrally woven into the fabric of our lives, now torn and shredded.


A black hole has been blown through our souls and indeed, it often does not allow the light to escape. It is a difficult place. For us to enter there is to be cut deeply, and torn anew, each time we go there, by the jagged edges of our loss. Yet we return, again and again, for that is where our children now reside. This will be so for years to come and it will change us profoundly. At some point in the distant future, the edges of that hole will have tempered and softened but the empty space will remain - a life sentence.


Our friends will change through this. There is no avoiding it. We grieve for our children, in part, through talking about them and our feelings for having lost them. Some go there with us, others cannot and through their denial and a further measure, however unwittingly, to an already heavy burden. Assuming that we may be feeling "better" six months later is simply "to not get it". The excruciating and isolating reality that bereaved parents feel is hermetically sealed from the nature of any other human experience. Thus it is a trap - those whose compassion and insight we most need are those for whom we abhor the experience that would allow them that sensitivity and capacity. And yet, somehow there are those, each in their own fashion, who have found a way to reach us and stay, to our comfort. They have understood, again each in their own way, that our children remain our children through our memory of them. Their memory is sustained through speaking about them and our feelings about their death. Deny this and you deny their life. Deny their life and you no longer have a place in ours.


We recognize that we have moved to an emotional place where it is often very difficult to reach us. Our attempts to be normal are painful and the day to day carries a silent, screaming anguish that accompanies us, sometimes from moment to moment. Were we to give it its own voice we fear we would become truly unreachable, and so we remain "strong" for a host of reasons even as the strength saps our energy and drains our will. Were we to act out our true feelings we would be impossible to be with. We resent having to act normal, yet we dare not do otherwise. People who understand this dynamic are our gold standard. Working our way through this over the years will change us as does every experience - and extreme experience changes one extremely. We know we will have recovered when, as we have read, it is no longer so painful to be normal. We do not know who we will be at that point or who will still be with us.


We have read that the gap is so difficult that, often, bereaved parents must attempt to reach out to friends and relatives or risk losing them. This is our attempt. For those untarnished by such events, who wish to know in some way what they, thankfully, do not know, read this. It may provide a window that is helpful for both sides of the gap.

Spring Break


Just like every other teacher and student in my district, I counted down the seconds to Spring Break. Friday afternoon came and the boys and I went running for the door. Seth had a ballgame that evening at 5:30. Riley had a game the next morning at 9. But after that, the sometimes chores of being a teacher and a mom could lessen a bit as we start to enjoy our week of nothing.


But as I sit here, in my first day of "nothing", I begin to panic. This will be my first break that will not be consumed by Grey's disease. It will be my first break without him. And as I realized that he will not be with us as Bill, Luke, Seth, Riley, and I go to our first Spurs game my heart hurts. As I realize that when my eyes open tomorrow morning I have no where to be, with my ever supporting school family off enjoying their break, I panic.


Yesterday was a good day. Today, not so much.


My bereavement counselor says I need to learn and let myself grieve. I need to slow down my mind and my body, and let myself feel Grey's loss. I don't know that I'm ready to do that. But I do know that this coming week has the power to make me or break me.


Grieving has been extremely tough for me. I have always been the caretaker, not the one having to be taken care of. The only way that I have been able to start to feel Grey's loss is by living it through others losses. I really need to take a second to thank the families I have been pulling strength from, although I'm sure they do not know it.


To the families of Carmen, Zoe, Kyle, Kayla, Judson and Hunter - It is so good to know that I am not alone. That as you describe that last breathe, the knock on the door, the hole in your heart, that I too know that. As hard as it is for me to let myself cry for Grey's loss, tears come easily to me for your losses. I read your updates and my heart hurts for your continuing struggles. Then, in the midst of feeling sad for your families, I realize that I too, am that family. Then I am finally able to grieve.