A Lasting Legacy

The Herald-Zeitung did a follow-up article on Grey, "A Lasting Legacy".

http://herald-zeitung.com/story.lasso?ewcd=96f1177f57a841db

For those of you that live in the area, it will run in tomorrow's paper, 6/30/09.

**Although it is sited in several different articles that we have expanded screening to test for 48 disorders, we have actually expanded screening to 52 disorders. That places Texas in the top 7 for UNS in the nation.**

Nana Turns 70!

Today my mom turned 70 years old! How did that happen?

Riley, being his usual self, said, "Nana is 70, 80, 90, 99 . . . Nana is almost dead!" I love that boy!

My mom is the best . . . the best mom, the best nana, the best friend. I don't know what I would have done without her this past year. She was with us every minute of every day the last week of Grey's life.

I don't think there is anything harder than losing your baby. But I think that watching your baby lose her baby has got to be close.

I love you Mom, more every day.

A Lit Candle

I have a story to share that my mom told to me.

Every night in Heaven God gathers his baby angels. Before he tucks them in, they join together and walk, and sing, holding their lighted candles. Every night, there is one little boy whose candle is never lit. So one evening another little boy runs over to him and offers to light his candle for him. The first little boy replies, "It's no use. My mom's tears always put it out."

I don't want Grey to be that little boy. I would hate to think that he could not celebrate his beautiful life because I have dampened it.

What? A Blog Award?!

Wow! A blog award? How cool is that?

I received the award from my "teacher across the hall" friend Misti. I tease Misti a lot, as to how she makes me feel more sane because she is so crazy. Truth is, although she is crazy, her heart is enormous! She was the one who got me interested in blogging in the first place. And, blogging has turned out to be very healing for me. In addition, it has really helped me to get Greyson's story out to the world.

Although I really enjoy reading Misti's blog entitled "Ag Teacher's Wife", I have more recently enjoyed her newest blog, "Misti's Moments". The girl has a true talent for photography. And in keeping true to her enormous heart, when I asked her to photograph a friend's family and her daughter's 1st birthday party, she did not hesitate to say yes, even though she's going to have to make a trip to Houston with me.

There are two people that I would like to pass this award on to. The first would be to my husband Bill. However, I will not do this officially because I am sure he would not want a pink flower posted on to his site. But, if you get a chance stop by "Hey Dad's" blog, check it out. It is a rare look into the thoughts and feeling of a grieving father. With the passing of his baby boy, Bill's life has changed drastically, and is continuing to change. It will be an interesting journey to follow.

Now, officially, the award goes to Carrie at "Little Miss Hannah". Carrie's daughter, Hannah, has been diagnosed with a rare form of Gaucher's Disease. Carrie is looking for a cure, and doing a damn good job at it. Her story is not only raw and real, but so inspiring. Trying to describe the blog, and Carrie , I'm finding is hard to put into words, still being a little raw myself. Through her blog, we have become friends and have even met in person. I am now lucky enough to call her a friend. I look at her in awe. You will too.

All blog awards come with rules so here they are:

#1 Grab the Award and link the person whom you got the award from.

#2 Pass the award to different bloggers whom you think are deserving of this award.

#3 Write a post about the award and there you’ll link the person who gave the award to you and those people who you’d like to pass the award.

#4 Continue your passion in writing because your hard work will always be appreciated.

Thinking With A Clear Head

It has been nice, that since I have known for certain that Greyson's Law was signed, to be able to think with a clear head. Although Greyson is still ever present in my mind, he is starting to resurface as the little boy I have been waiting to remember, not the boy that died from Krabbes Disease.

I have memories of him sitting in his bouncy chair as I walked through the front door, the excitement in his eyes far surpassing the movement of his body. I remember how he use to let the summer breeze wrap around him as we went for evening walks. Sometimes it would take his breathe away. I remember the stiffening of his body in anticipation on the bathroom floor as I turned the bath water on. I remember the open mouth of his sweet kisses on my lips.

I was so afraid, that in the craziness of it all, I would forget the things I loved the most about him. But, I have not. And I notice, the more I celebrate his life, the more freely the memories come. It seems as though it is only when I am drowning in sadness that I struggle to bring his memories afloat.

It just seems to be easier, for me, to remember and love Grey for who he was and what he stood for. His disease will not take me too.

Grey's Website

I finally got brave enough to take over Grey's site from my brother Paul (thanks for the first 6 months brother!). It has a few new pages and a new video. Check it out and let me know what you think.

www.greysgift.com

Celebration

There are some things that I just can't put into words. Sunday's celebration was one of those things. So here is my thank-you in pictures. I love you guys!

Governor Perry signed HB 1795 establishing Greyson's Law

David & Patsy are the best hosts (and friends) ever!

Carrie, Misti, & Bill

Melinda, Albert, & Mom

Robert, Carrie, & Hannah came all the way from Houston!

Ceci & Vicki (the butterfly lady)

Rod, Erin, & Bill

Misti finally meets Hannah

Gov. Perry Signs HB 1795 Into Law

On June 19, 2009, Gov. Perry signed HB 1795 establishing Greyson's Law.

Greyson's Law, effective in Sept. '09, will add 20 disorders to Texas' newborn screening panel and establish an advisory committee to oversee it's future expansions. Nearly 150 babies per years will test positive for one of these additional disorders, with Greyson's Law now saving them from disability or possible death.

Below are a couple links to see HB 1795's progression. It's been a long, emotional road. Thanks to all who chose to make this journey with us.

http://www.legis.state.tx.us/BillLookup/Actions.aspx?LegSess=81R&Bill=HB1795

http://www.legis.state.tx.us/BillLookup/BillStages.aspx?LegSess=81R&Bill=HB1795

Also check out Hunter's Hope site as they pay tribute to Grey:

http://www.huntershope.org/default.asp

Dearest Grey,

You changed the world, Little Man, even though it meant you would have to leave us. Thank you. I love you, with everything I am and everything I have. I will celebrate you every day!

Seth took the above picture for you on one of our visits to the capitol. Isn't it incredible?! I promised him that when your law passed I would post it for the world to see.

Love,

Forever Your Mom

Why I Am

Dearest Grey,

As a new year approaches I have some promises to make; promises to you, promises to me.

Today not only marks my 37th birthday, it also marks Father's Day, and most importantly the day that HB 1795 becomes Greyson's Law. So as your legacy starts, I'm afraid that some things, too, must end.

I don't even know where to start, but I'll do my best to try.

I know Grey that I am starting to heal, and I know that you want that for me. Accomplishing Greyson's Law closes a door for me. Through this whole process you have been in the forefront of my mind, nearly all consuming. At times I was frustrated, angry. Trying to separate the legislative process from my baby boy, at times, was very difficult. And as much as I needed you to be the face of Texas' Newborn Screening, I longed for you to just be my baby. My baby that I could just stop and grieve for. So today Grey, I promise to take you back and I choose to share you with only those who deserve you. I have met many great people through your loss Grey. The people who continue on this journey with me, will do so because they love you.

Today, I promise to let myself feel your loss. But in feeling your loss, I promise to choose to celebrate your life. To look into your eyes was to see unconditional love. To be lucky enough to have given you those eyes is at times overwhelming to me. But you were chosen for me, and I was chosen for you. And although I ache for you everyday, I would ache a thousand times over just to have known you.

And today Grey, I promise to get out from underneath myself and take back some of the qualities that made me who I was. I know Grey, that I am a different person because of your loss. But I also know that your loss has made me a better person. In everything I do, I want you to shine through me. I want to be the friend who listens. I want to be the mom that plays. I want to be the wife that is non judgmental, the daughter that is thoughtful. It has been a long time since I have been able to get out of my own way and think of others. But today, I take the sensitivity that you have shown me, and I share it. I listen, I feel, I love much greater than I ever have before.

There is a great line in the new DMB song "Why I Am". It says, 'Out of my head and into the room, hello.'

Today, I say good-bye to part of you.

But, I also say hello.

Love,

Forever Your Mom

You Will Make It

Given to me by my "sister", when I needed it the most.

You Will Make It - Jem

Go to bed everything's alright
Don't know the whole world's changing
As you sleep through the night
Wake up slowly and it's a different world

Hear the news and the floods begin
Screams so loud but only felt within
Heart is shattered
The pieces can't be found

I feel your pain,
I wrote this song for you, for you
You will make it, you will make it through
I promise you, he would want you to

Months go by, still living in a daze
Don't know what you've done
With the last seven days
Soul is numb and life is like a dream

Helping hands but you push them away
How could they understand
Don't wanna share your pain
Afraid to heal, 'cause that would mean goodbye

I feel your pain,
I wrote this song for you, for you
You will make it, you will make it through
I promise you, he would want you to

One day sunlight hits a photograph
And it makes you smile
The memories dance around you now
And they make you smile

You're not alone
You'll never be
Just like the stars
They oversee
And they whisper to you
You're still, you're still,
You're still, you're still alive

I feel your pain, I
wrote this song for you, for you
You will make it, you will make it through
I promise you, he would want you to

Do not stand at my grave and weep
I am not there I do not sleep
I am a thousand winds that blow
I am the diamond glintson snow
I am the sun on ripened grain
I am the gentle autumn rain
When you awaken in the morning's hush
I am the swift uplifting rush
Of quiet birds in circled flight
I am the soft stars that shine at night
Do not stand at my grave and cry
I am not there; I did not die

Shooting Star

I know it's been quite a while since I have posted. I thought I just really haven't had much to say. But I think the reality of it is, maybe I just don't want to hear what I know in my heart is true.

Grey is gone, really gone. It boggles my mind.

Today when I picked up the mail I received an invitation from Hope Hospice to reveal this year's quilt. Every year they make a quilt from material of loved ones lost. We are invited because Grey's blanket is part of their quilt.

At first I was excited. 'Oh look, we get to see the quilt. They've finally finished the quilt.'

Then I was sad. How I wish we were not members of this exclusive club.

This afternoon I did pay tribute to Grey by adding to the tattoo on my calf. I have a sun intertwined with a moon. Four stars outlined in blue represent the boys. Just a year ago, almost to the day, I added Grey's star to the original three. Just a year ago. Today, I decided to turn Grey's star into a shooting star. A shooting star is the best representation of Grey that I can think of; bright, beautiful, surprising, fascinating, . . . gone to soon.

When I got home, Riley was the first to ask to see it.

"Oh! How come Greyson gets a shooting star? I want a shooting star!"

No Honey you don't. Believe me, you don't.

Grey is gone, really gone.

On The Governor's Desk

Today I received the following email:

Good afternoon everyone,
I want to thank you all for your hard work. As you know, the Governor and First Lady understand the importance of early diagnosis and support the mission of the newborn screening program. The bill is on its way towards signature, however, we will not be able to do a bill signing ceremony. Thank you again, and please feel free to contact me if you have any further questions. Sincerely,
Dianna E. Sosa - Office of the Governor

So, although we will not be awarded a signing ceremony, Greyson's Law is on Governor Perry's desk to be signed!

Who ever thought six months ago that we would be here?

All in God's plan.

6 Months

Today marks six months since Grey left his broken body.

It would be easy to be sad, to get wrapped up in the sounds, smells, and experiences of that day. But last night as I laid in bed, I decided that I would not. Instead, today I want to celebrate Grey's life. Grey was given to me as a gift, on borrowed time. I was lucky enough to be his mom. I would do it all over again just to have those 11 months, 3 weeks, 1 day, 14 hours, & 8 minutes.

Today, we have decided to release balloons, six of them.

Please help us celebrate today, wherever you are. I'm asking, if you'd like, to post a comment of your favorite memory of Grey or how he has touched you. I'd like to share them with the boys.

If you cannot post here (I've heard it can be difficult if you don't have an account) please send it to my email, nicnbill@gvtc.com. I will check it throughout the day.

Again, thanks for all of your support. Your love for our Grey is amazing!

And . . . just a legislative update:

HB 1795 is on the Governor's desk waiting to be signed. He has told us that he and the 1st lady are very much in favor of Greyson's Law. We are still waiting to hear if will can have a ceremonial signing. If not, it becomes law on June 21st, which is both my birthday and Father's Day.

Pieces Inside Of Me

As my first week of summer has come to an end, there are many things that I find I am missing. I'm missing my friends from school (many of who became more like family this past year), I'm missing my schedule, my job, the kids I've taught for the last 5 years, and my Grey.

I knew this was coming. I knew that I could only put Grey's loss aside for so long. And I knew that I could only wait so long before I let myself write about it.

My counselor compared her grief in this way: She said that every time she allowed herself to grieve, she felt a chunk of the rock wall concealing her heart break away, exposing a new, healed portion of her heart. I don't feel that.

Earlier this week I posted DMB's new song "Baby Blue". Part of the song says this:

and I will forever, ‘cause you’ll forever be
my one true broken heart, pieces inside of me
and you’ll forever, my baby be

If I could try to explain how I'm feeling, that would be it. My heart is shattered. And with every hurried memory of Grey, I try to grab on to that shattered piece. It's like they float all through me, and they pop up in the least expected places. I reach for them, in every which direction, as fast as I can and I pull them in and I try to rebuild my heart with each shattered piece.

But it feels like every time I let myself cry, my heart shatters more. So I start all over. I can almost feel him, as I try to pull him in.

Almost, but never again.

Sent To Governor

This is pretty exciting:

http://www.legis.state.tx.us/BillLookup/BillStages.aspx?LegSess=81R&Bill=HB1795

My son's legacy, and the countless lives of little Texans, lies in your hands.

Baby Blue

This song is for you Grey.

Baby Blue - Dave Matthews Band

Confess, your kiss still knocks me off my legs.

The first time I saw you was like a punch right through my chest

and I will forever, ‘cause you’ll forever be

my one true broken heart, pieces inside of me

and you’ll forever, my baby be.

You will rest your head, your strength once saving.

And when you wake you will fly away,

holding tight to the legs of all your angels.

Goodbye my love, into your blue, blue eyes,

your blue, blue world, you're my baby blue.

Confess I'm not quite ready to be left.
Still, I know I gave my level best.

You give, you give, to this I can attest

You made me, you made me.

You and me forever, baby.

You will rest your head, your strength once saving.

And when you wake you will fly away,

holding tight to the legs of all your angels.

Goodbye my love, into your blue, blue eyes,

in your blue, blue world,

you and me forever.