HB 1795 - Greyson's Law

HB 1795 finally made it through the Senate! It picked up three amendments on it's way through. The first is a Bill to screen for HIV in newborns. The next is a Bill to improve the CHIPs program (Children's Health Insurance Program). The last is an actual amendment to ensure that it is financed. We can be proud that Greyson's name will carry these other great Bills. My Little Man has touch my world, and my heart, in ways that I could never explain.

Thank you Senator Uresti. You said that you would get Grey's Bill through before it was all said and done. You did it with 90 minutes to spare. You make me believe that there still are great politicians out there who lead with their hearts. You didn't know my baby from Adam. Now you have helped to give him a legacy. And you have helped my family to start healing.

Thanks, too, to all of you who have made calls, sent emails, and prayed for us. Your love for Grey is overwhelming.

Urgency

Grey's SB 1720 died in the House last night. Today is the last day for the Senate to hear Grey's HB 1795. It has been on the Intent calendar since Saturday. If it is not heard by midnight tonight, it too will die. If it is heard, it will pick up 2 amendments, one to screen for HIV in newborns (actually a Senate Bill that died in the House) and the other to make sure it is financed. One it is heard and passed with the amendments it goes back to the House for final approval. The Senate can take up to 24 hours to get it back to the House. The House then has to lay it out for 6 hours before approving it. The House will have until Friday to approve it. If the House does not have time to approve it, it will die there.

Please contact Lt. Gov. Dewhurst and let him know you want HB 1795 - Greyson's Law to be heard today before the session ends. Because of the urgency, it would probably be best to call him. Below is his contact information:

512 463-0001
http://www.ltgov.state.tx.us/contact.php

If . . .

If, I would just let go.

If, I truly believed that Grey was sent here to do this job in his short 11 months, 3 weeks, and a day, I would just let go.

If, I really believed that God reached out and picked me to be his mom because He knew I would make sure Grey's gift was given to others, I would just let go.

I would let go and know that, for all I've given up, God would reward me with a legacy for Grey.

But I sit, and I wait, and I cuss with every number that goes by.

And I question.

Please, just call my number.

My Cardinals, My Friends

Let me start my saying that Seth's team earned a spot in the playoffs today. They played an incredible game! Way to go boys!

But my Cardinals, they've become more than just my team. They've become my friends. They've gotten me out of the house when it would have been easier to crawl up into a ball. They've let me talk while intently listening. They've made me laugh. They've made me cry. They've worn Grey's bracelets faithfully throughout the season.

I knew, that if I could be lucky enough to surround myself with great people this season, they would get me through the Spring. If I continue to be lucky, they will help to get me through the summer, long after the season is over.

I am so lucky to have all of you.

The above picture was taken at the fields. After Grey's Bill went through the Senate they surprised us with a cake after a game.

My Cardinals, my friends.

Our 7 O'Clock Date

There are some places, just a couple, that at times I cannot bare to be in. One is the boys' bathroom. The other is on Grey's floor.

Every night as 7:00 it was bath time. It was one of Grey's favorite times of day, if not the favorite. In hindsight, the warm water probably relaxed his muscles. Most nights, I gave him his bath. And most nights, Riley joined him. Neither Ry or I have made it a point to have bath time in that bathroom since Grey's death. Silly, I know, but I would rather waste the money filling up my garden tub for Ry to bathe in than to have to sit on that bathroom floor without Grey in his tub. I wonder if Ry feels the same, since he begs to take a bath in my tub every night.

Grey took his last bath on a Wednesday night. To my regret now, I could not bare to give him his bath that night. Bill gave it to him. And it did calm him. Bill then took him in his room, and on the bedroom floor, as usual, proceeded to play with him. It was then that Grey gave his very last kiss, but not to me.

I wonder if he wondered where I was that night. I wish I would have done things differently. But I was so tired, so sad. And in thinking about me, I missed something I can never get back . . . his last bath, his last kiss.

He died that Friday. In anger, his bath seat was the first, and only, thing I've ever thrown away.

Little Kayla Rose

I don't know how to explain it, but when another family loses their child to Krabbes, it's like reliving the loss of your own child all over again.

Such was the case today when I heard of the passing of Kayla Rose de Visser. My heart aches for her family and friends. And although I take comfort in the fact that Kayla to longer suffers within her broken body, I am infuriated that yet another family loses a part of them to this horrible disease.

As we were driving home, Riley and I were talking about Kayla. At first he was sad. But then a smile came to his face.

"Hey Mom, I bet Kayla gave Grey a kiss for us," he said.

The thought of that made me smile.

Fly high & play hard, Little Kayla. Your broken body no longer contains you.

Our thoughts and prayers go out to the de Vissers. If you would like to learn more about Kayla's story you can click on the link below:

http://web.me.com/adevisser/Kayla/Welcome.html

I See You

Let me start by saying that I am not a fan of birds. It started years ago, when I was around 5, and involves a Super Ball and a bird's nest.

Anyways, this evening I decided to go for a walk outside and get the mail. The weather is cool and breezy, which is incredibly strange this time of year. On walks I often find myself talking to Grey. Sometimes I feel closer to him when I'm outside. While at the mailboxes a black-chested bird on the wire squawked at me, loud enough to get my attention. I ignored it, not liking birds, and started my walk back home. Turning into my driveway I heard another loud squawk. I looked up, same bird, different wire. I chuckled.

"Grey," I said out loud, "if you're going to use a bird to get my attention, he at least has to be colorful."

At that moment, the bird swooped down to reveal the most brilliant, bright blue feathers on his back that I have ever seen.

I see you Little Man, even in things I don't like. How could I not?