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.


Friday, March 20, 2009

Senate Committee on Health and Human Services



http://www.senate.state.tx.us/75r/senate/commit/c610/c610.htm


Grey's bill in the Senate was put to committee today. The above link seems to be the most direct way to contact the members of the Senate Committee on Health and Human Services. Just click on their names at the top of the page. When it takes you to their page, scroll down to find their email. When you write them to support Greyson's Law, please make sure to put the Senate bill number in the subject box, SB 1720. Please pass this on to anybody and everybody.

With Hope,
Nicole

Thursday, March 19, 2009

Always


Grey,


I try. I try to remember your touch. I would sit and rock you and you would stare at me. As the corners of your mouth turned up into a smile, you would lift your heavy arm to my face and push my cheek with your hand. I would over-exaggerate and whip my head to the right and you would laugh. Over and over again. I wonder now what a chore it might have been to make your body work that way, all so that we could laugh. It was our game, something you only did with me. You'd think I could remember how it felt. I close my eyes and I try. Just tears.


But I still feel you in my heart. I feel your laughter there. I feel your spirit there. I feel your curls there, and the depth of your eyes. How grateful I am Grey, to have even known those things, if only for a little while. How grateful I am that you were able to show me, up until nearly the very end.


I'll always feel you Grey. Always.


Love,
Forever Your Mom


Tuesday, March 17, 2009

Blackbird



Grey Grey,
Last night I finally dreamt of you, but it wasn't the dream I hoped for. It was black, pitch black. I could hear you, babbling on the couch. But I was frozen, like if I moved I would awaken and I'd no longer be able to hear your voice.

It took everything I had just to get out of bed this morning. All day I felt as if I couldn't take a deep breathe. And I've tried to analyze my dream over and over.

Coming home from a long overdue dinner with your godmother, Blackbird came on. Of course, it was the DMB version. As I listened to it, I realized it had to have been another gift from you, maybe an explanation as to why last night was so "dark".

I miss you Little Man.

Love,
Forever Your Mom



Blackbird singing in the dead of night
Take these broken wings and learn to fly
All your life
You were only waiting for this moment to arise

Black bird singing in the dead of night
Take these sunken eyes and learn to see
All your life
You were only waiting for this moment to be free

Blackbird fly, Blackbird fly
Into the light of the dark black night.

Saturday, March 14, 2009

Greyson's Law - Who Knew?

This is the updated video of "Who Knew?" I finally learned how to use imovie (thanks Jarrett). As we fight to expand Texas' Newborn Screening, this video will be shown to all the committee members, both in the House and Senate, to help bring support for Greyson's Law, HB 1795 and SB 1720. Please feel free to post and pass this on.

video

Thursday, March 12, 2009

A Sign Of Life


I saw my bereavement counselor today. It was my first time to see her without Bill. There were a lot of things that I learned in my hour.
Grieving affects my spirit.
In order to allow myself to grieve, I must treat my spirit as I, as a mom, treated Grey. I must take care of it's needs, allow it to have emotions, give in to it's wants. I must put it first, before everyone else, so that I can heal. Until I start healing I cannot expect to help heal others.
Although grief is awful, it is also calm. It comes in waves, and it will leave as quickly as it comes as long as I allow it to flow through me.
My heart is a vessel full of many different emotions. Until I let those emotions out, there will not be room for more, be it good or bad.
Grief makes you super-sensitive to everything; looks, sounds, touch, and conversation.
My biggest fear was that if I gave in to grief and allowed myself to cry, I would never stop. However, grief is natural. Crying forever is not. It should not last for more than a minute. I can allow myself to do that.
Ironic, that on the 3 month anniversary of Grey's death, I actually feel alive for the first time, like I have started to come out of my fog. Another gift, I guess.

Speaking of gifts, today was a very successful day at the capital. Senator Uresti sponsored Grey's bill in the Senate. It was filed on the 10th of this month and is now SB 1720. That doubles our chances of getting it through. Policy analysts for our first committee seemed very excited about Grey's bill. One was so excited that she spent the day on the phone with the two medical associations and convinced them not to lobby against us. That is huge! And, another representative contacted us about adding another disorder to our bill (one he has been trying to pass), because he heard that our bill was really picking up steam.
The whole thing just amazes me, how quickly it is all happening. Just an affirmation that Grey was truly here for 11 months, 3 weeks, and 6 days as a vessel for something much bigger. And he was given to Bill and I so that we could use him to make a difference.


Dear Grey Grey,
Today I took my first deep breathe and as I exhaled I let go of some of the hurt that I have been keeping inside of me. I pictured the pain coming out of my mouth and filling a baby blue balloon. I let it go and as I watched it drift up to you it no longer looked so ugly. By the time it reaches you it will be filled with the love that replaces that hurt.
I'm trying to get rid of the pain Baby. I really am. And I think I'm becoming OK with that.
Love,
Forever Your Mom

I'm On The Corner Of Grey St.

Grey Grey,

Today you have been gone three months.

It feels like yesterday. But it feels like years.

You are everywhere and nowhere at the same time.

I love you Little Man. I keep telling myself you are in a better place, even if it's not with me.

Love,
Forever Your Mom

Wednesday, March 11, 2009

I'm Just A Bill

For those of you who didn't pay attention in Government class, this is how it works.

Tuesday, March 10, 2009

In The Darnedest Places


I spent a good part of this evening at our school's elective fair. I saw a lot of people. Got a lot of "those" hugs. Got a lot of those "How are you doing's". By the time I left I was worn out, tired of all the sympathetic eyes.


As I was walking down the hall with my friend I noticed, in the janitor's closet, a picture of Jesus propped up on a roll of toilet paper. For some reason it just struck me as funny. I laughed, hysterically. For a moment I had found my sense of humor, a glimpse of the old me.


Some people see Jesus in the details. I see him in the janitor's closet setting on a roll of toilet paper. I guess you can find Jesus in the darnedest places, as long as you're looking.

Monday, March 9, 2009

SA Living Link


Here is the site to our segment on SA Living.


Thanks to Shelly and SA Living for making us feel at home on the couch.

Thanks to Delaine and Goose for the opportunity to first tell our story.

I see Grey's spirit in all of you.

Sunday, March 8, 2009

My Shooting Star


Dear Little Man,


I don't think that there will ever be a time that I won't wonder about what you would be doing if you were still with us and healthy. At 14 1/2 months, I can now only imagine as to what you would be like, how you would look, and who you would take after. It makes me so sad.


When we first lost you I searched and searched for videos of you, knowing that we had not taken many. The only one I found was of your baptism, and looking back at it I can now see the affects of your disease that we were oblivious to then.


But today, you gave me another gift. Hidden away in the back of a drawer was a video of you taken when you were three months old, before you were symptomatic. I was feeding you your first bowl of cereal. You were eating it up. Then you were taking a bath with Ry. How you loved your bathes. Next you were on your changing table. After bathtime always seemed to be your favorite time. You were kicking and smiling, making sounds that were so new to you. And lastly, you were at Ry's T-Ball game, sitting up in your stroller, laughing at the wind. All good times.


Who would have thought then how drastically our lives would change? That like a shooting star, you would shine and amaze us all, but leave us as quickly at you came.


Love,

Forever Your Mom

Thursday, March 5, 2009

New Committee Members


Grey’s bill (HB1795) has been sent to the Public Health Committee instead of the Appropriations Subcommittee on Health and Human Services.

Here is the link to the correct committee:
http://www.house.state.tx.us/committees/list81/410.htm

I hate to ask, but please take time to email these members. Please pass this post on to anybody and everybody. We have to get through this committee before we go to the subcommittee. We could be meeting with this new committee as soon as next week.
I would like to share with you that, in calling to make appointments with members of the subcommittee, they definitely know who we are. We have all of you to thank for that.

Wednesday, March 4, 2009

Deeper


If I look deep enough, I still can see Grey's gifts.








Monday, March 2, 2009

You Just Can't Win Against A Six-Year-Old


Tonight Riley begged me to play a game called Landscapes with him. It's a game where you build castles and have ogres and things that fire discs and rocks. Believe me, it was the last thing I wanted to do. But Ry knows that if he whines enough I'll give in, and I did.

So we build our cities and he puts this disc into this slingshot looking thing. He fires and misses. My turn. I fire and his one of his ogres. Ha ha! I'm winning, so I think. Until he stands his guy back up and tells me he has a medic. He fires again and hits one of my guys. Apparently, I do not have medics. So, being the competitive sort that I am, I pick up a rock and throw it, hard, at his castle. It falls over. Ha ha!

Now he tells me he has engineers!

How do you win against that?!

But Tonight . . .


Dear Grey Grey,


I know it has been awhile since I have stopped to just sit and talk with you. Most days I try with all my might to push your loss aside, so that I don't cave under it. But tonight, I sit and I fight back the tears because I miss you so much.


It's a busy time right now at school, TAKS testing. I know I play a big part in making my end of it happen. Yet every other thought is of you. And things, such as my job, seem so . . . unimportant. If my kids' testing goes off without a hook tomorrow it won't because I gave it 100%. It will be because I got lucky. But I figure that's the least God can do since He took you from me.


As time goes on, the new routines become more familiar. I no longer look for your carseat in the van. But I still don't feel comfortable in the bleachers without you in my arms. Sometimes I swear I hear you and it makes me smile. Saturday I went into a new store, a store with no memories of you in it. A store whose baby section I had never bought you clothes from. I wait for first like that, but when they come they knock me flat.


Every night I go to sleep waiting and hoping to dream of you. When my alarm goes off at 6, I hit the snooze bar at least twice, begging you to just give me just a few minutes with you. Maybe you know I'm not ready. Maybe you know if you visited me in my dreams I'd never want to wake up.


I just don't know how this will get any easier. I hate that I have to listen to a recording of your laugh to remember what you sound like. I see babies learning to walk and I wonder, now at 14 1/2 months old, what you would be doing, what I'm missing out on . . . other than you just being.


We're still working hard Grey to get your law passed. And I do see the gifts you continue to give me everyday. Most days, your gifts get me through. But some days, like today, they're just not enough.


Never have I loved, or been loved, so unconditionally as with you. Maybe that's why it hurts so much. But I do believe, and always will, that I am the luckiest person in the world to have been chosen to be your mom. Someday Little Man, we'll wrestle and play together. Until then, know that you are in my every thought. I breath you in with every breathe I take.