Sunday, December 20, 2009

I'm Afraid to Jinx It.....

I have been stressing about the status of Greyson's Law.

A couple of months ago, I started lining up my letters of nomination for the Advisory Council that is to be created in accordance with Greyson's Law. After confirming the delivery of all of them, I was shocked to find out that as of Mid- August, no progress had been made of the formation of the Council or the implementation of the additional testing, except for the Cystic Fibrosis testing.

I was confused. And Angry!

I started making calls and trying to find out what was going on. My first call was the to the office responsible for handing out the monies to the departments responsible for enacting the legislation. Which in Greyson's Law's case would be the Texas Dept. of Health and Human Services (DSHS). I was stunned when I was told that the budget Rider that was meant for Greyson's Law was combined with the monies for 2 other new programs to be enacted by the DSHS, and that one of these projects had large budget overruns that were "unexpected" and had used all of the money allocated. All of IT! Not just it's portion! The portion for Greyson's Law too!

What's that saying? "Give a dog a bone?" Well, I started making calls. All of the contacts that we made during the work to get Greyson's Law passed. Scheduling meetings, agreeing to be patient and not attend meetings because of other sensitive matters to be discussed at the same time, worrying that nothing was being done, that Greyson's Law was destined to become what the Cystic Fibrosis was, an unfunded mandate....

I haven't heard much of anything for a couple of months, other than a few worrying facts from some sources. But then, two weeks ago, I heard that the Advisory Council was getting ready to be formed. I immediately called the DSHS and asked what I could do to help. I was told that they still had my letters of nomination and that the hopes were to get the Council up and working so that ways to find funding internally might be possible.

YEA! Baby steps are good too....

I worry about jinxing it, but this week I got an Nomination Information request form from the

DSHS via email!

Here's Hoping!

Friday, December 18, 2009

Greyson Was Born 2 Years Ago Today!

We as a family have passed two major milestones since I last Blogged; Greyson's First Angel Day and his second birthday. I don't know what it is, but I just haven't been compelled to Blog here lately. I don't know what it is, but I am having trouble getting in touch with my feelings lately. All of the emotions are still there and as strong as ever. In some ways, I guess I have started to come to terms with the fact that our Little Boy is in Heaven.

Believe me, I am not happy about it, but I have to accept it. Not for my sake, but for the sake of all of those that I love.
Nicole hit the nail on the head last year when she blogged about: "I wonder what kind of Birthday you have in Heaven?"
It is much easier on Greyson than it is us. I truly believe that our loved one's in Heaven are able to see us and be with us anytime that they want. I what to believe that he is always with us, but it is so hard to not be able to see or touch him.

The Love that our friends have for Greyson just absolutely dumbfounds me. I mean, I get that people were and are drawn to Greyson, but it is just humbling to me that so many have been affected by our sweet boy! Their love and support has been amazing! I feel lucky and blessed to be surrounded by so many wonderful people that love me and my family.


We love and miss you, and are sooo! proud of you.

Saturday, December 5, 2009

Last Year We Lived It... Now We Are Feeling It...

Broken and lost, raw and bare.

Simple words. The meaning of these words to my family right now are anything but.

This time last year we had to endure and master the unendureable, the unmasterable. A nightmare come to life, pain personified.

Endure we did, together, but forever changed.

I for one am still learning just how much.

December the 3rd was my 41st birthday. It is a day that I have been dreading. One year ago, we had our last family get together at my sister Adrienne's house and celebrated my birthday. Grey was his shining self. Despite the terrible disease that was ravaging his tiny body, he was bright and beautiful, smiling and sweet. I miss his loving looks and eyes, but I am proud that he too saw that love in our eyes for him.

I think I am most proud of that. The fact that he never knew what was coming. All he knew was that he was loved so much. His spirit was beautiful and it poured out of his smile and his eyes in abundance.

When the long dreaded day of my birthday arrived, first, after ushering Nicole and the boys off to school, I allowed myself to wallow in my pain. After the tears stopped, I was amazed and relieved to realize that my pride and thankfulness that I got to be Greyson's Daddy has now overtaken the strength of my grief. I am still broken, still sad, but better for it.

I think that I did learn about true and complete love. I learned it from Grey. I am finally able to thank God again for giving me Greyson. I haven't been able to for a very long time.

Daddy Loves You Greyson! Always and Forever.

To all of you that know and are dear to us, I thank you for your understanding and love. Please know the Nicole, the boys, and I will make okay because of your help. This is not to say that this journey is over. It is hard to describe, but we are reliving each day of last year again this year. I thought that it was only me, but Nicole has confided to me that she too is having this experience. Each day is full of "at this exact time last year..." Some of you are also experiencing some of this too.

Please know that your friendship honors us. We are better for it. I am better for it.

And from me to a certain friend, your respect humbles me and I hope to continue to deserve it, to earn it as you have earned and deserve my respect and admiration. Thank you for your kind words, they have given me strength.