Sunday, May 31, 2009

We Did It


Greyson's Law passed through both the House and the Senate tonight, with an hour to spare! Thanks to all of you. Words would never be enough.


Grey -
You, Little Man, are larger than life. I love you, with everything I have left in me.
Love - Forever Your Mom

Saturday, May 30, 2009

As Of 10 PM Saturday Night


HB 1795 did get Conference Committees in both the House and the Senate today to try to strip the CHIPs amendment from it. Each committee has a chair, who is the Bill sponsor, and five members. 3 of the 5 members have to sign that they are in agreement of removing the amendment. We were able to get the signatures on both sides. HB 1795 is now free of CHIPs, thank God! Please don't get me wrong. I am all for CHIPs, as is Rep. Pierson, but it should never been placed onto Greyson's Law. There was, and still is, a perfectly suited Bill to carry it by Rep. Coleman.

Next, the Bill has to wait 24 hours before it can become eligible to be read again on the Senate floor. It will become eligible at around 9:30 PM. Because it passed unanimously through the Senate already, it is expected to pass again. The trick will be getting Dewhurst to read it before midnight.

So again I am asking, hopefully for the last time, for you to contact Lt. Gov. Dewhurst and ask him to read HB 1795 before the session ends tomorrow at midnight.

Our Bill lives to see another day! I'm posting this with my 2 favorite pictures, for luck.







Please Contact Lt. Gov. Dewhurst


Once again, the fate of HB 1795 is in Lt. Gov. Dewhurst's hands. Only he can appoint a Senate Conference Committee to discuss stripping the CHIPs amendment from Grey's Bill. Please call or email him ASAP and tell him that you would like him to appoint a Conference Committee to discuss removing the CHIPs amendment so that Greyson's Law does not die. Remind him that if Greyson's Law dies, so do countless little Texans.


512 463-0001

Friday, May 29, 2009

The Latest As Of Friday 11 PM


Here's the latest:
http://www.kxan.com/dpp/mobile/Newborn_screening_bill_in_jeopardy

We now have until Sunday midnight to get it through. I'll let you guys know more as soon as I do.

Houston Chronicle

http://www.chron.com/disp/story.mpl/metropolitan/casey/6446323.html

Above is an article about the CHIPs amendment.

I think what is most irritating is that nobody has even questioned what will happen to Greyson's Law because of these games.

If you have been following, you will notice that I have removed yesterday's post.  I do not want to draw conclusions or make assumptions that I am not 100% sure of.  

I have been told that Sen. Uresti has taken HB 1795 back to the Senate.  I have also been told that he is completely committed to making sure that Greyson's Law goes through.  I'm not sure what his plan of action is, but my heart tells me to trust him.  I have no other choice.

Wednesday, May 27, 2009

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

Tuesday, May 26, 2009

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.

Saturday, May 23, 2009

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.

Wednesday, May 20, 2009

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.




Monday, May 18, 2009

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:

Saturday, May 16, 2009

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?

Friday, May 15, 2009

Amazing

Dearest Grey,

You touched more lives in your short 11 months, 3 weeks, and 1 day while here on Earth than most touch in an entire lifetime. Through your loss, you continue to touch even more. You are amazing! I am so proud to be your mom. I miss you more than I could ever put into word.

Love,
Forever Your Mom

Thursday, May 14, 2009

SB 1720 Is Now Greyson's Law!

If you would like to see the passage of SB 1720 - Greyson's Law click on the link below, then click on May 14 Senate Session (Part II). You will need to fast forward to 35:24.

http://www.senate.state.tx.us/avarchive/?yr=2009


FOR IMMEDIATE RELEASE May 14, 2009


Texas Senate passes Greyson's Law to expand newborn screenings

The Texas Senate on Thursday unanimously adopted a bill by Sen. Carlos Uresti that will expand the state's genetic disease screening program for newborns.

Senate Bill 1720 was dubbed Greyson's Law for Greyson Morris, who died just short of his first birthday of Krabbe disease, a degenerative disorder of the central and peripheral nervous systems. Early detection of the disorder could have prevented Greyson's death.

The American College of Medical Genetics recommends that newborns be tested for 54 treatable disorders. Currently, the Department of State Health Services is required to screen for only 29 disorders in the ACMG screening profile. Greyson's Law will raise the number to 49, with only a minimal cost to the state.

"Early detection can mean the difference between life and death for a newborn child," Uresti said. "For about the same cost of treating one undiagnosed child, we can expand the screening program for newborns across the entire state."

The bill will also create a Newborn Screening Advisory Committee to develop recommendations and research concerning mandatory expanded newborn screenings.

Uresti commended Greyson's parents, Bill and Nicole Morris, for their unwavering support for the bill, saying, "They made sure that everyone involved in the legislative process knew the importance of this bill and its potential to save children's lives."

Senator Uresti represents Senate District 19, a 55,000 square mile area extending from the city of San Antonio in Bexar County to the Lower Valley of El Paso County and including approximately 750,000 people. The largest legislative district in the nation, it spans two time zones and contains nine of the 14 border counties in Texas, two-thirds of the U.S.-Mexico border within Texas, and all or part of 23 counties. Senate District 19 is home to five U.S. ports of entry, three U.S. toll bridges, 62 school districts, seven military sites, six state parks, and two national parks.

Wednesday, May 13, 2009

HB Passes House, Senate Floor Tomorrow

HB 1795 passed unanimously in the House today!

However, Lt. Gov. Dewhurst placed it on the Intent calendar in the Senate due to it's fiscal note, which now includes CF. As of late this afternoon, he had decided to put it up for debate on the Senate floor tomorrow. Please show your support of SB1720-Greyson's Law by emailing or calling Lt. Gov. Dewhurst before 11 am.

You can contact his policy advisor at:


(512)463-0001.

Tuesday, May 12, 2009

5 Months

Today, Grey has been gone 5 months. Tomorrow, Greyson's Law - HB 1795 is to be heard on the House floor. So I would ask that, instead of being sad, you would take a minute to celebrate Grey's short little life knowing that we've almost accomplished what I believe he was sent here to do. I cannot thank all of you enough for the constant support given to me and my family.

Many of you have asked me where to find Grey's video with the actual footage in it. Today, in memory of Grey, I would be glad to post it again. It's called "In Less Than A Year".


video

Today is also Luke's 14th birthday. Wow, that makes me feel old! I haven't quite figured out how he is 14 when I am still 29. He's turning into such a handsome, thoughtful, funny young man. I'm so proud of him. Five months ago today he chose to stay by my side and watched as Grey took his last breathe. I love him so, even when I have to yell at him a gazillion times to put his shoes on so that we can walk out the door and not be late to school.



Sunday, May 10, 2009

In My Life

To Grey Grey,

In my life, I love you more.

Love,
Forever Your Mom

Saturday, May 9, 2009

Progressing

This picture was taken on 12/3, just 9 days before Grey died. I was so lucky that he was so happy and present for so long. Not many Krabbes parents can say that. My heart aches for those who have not been so fortunate.


I know it has been a long time since I have really blogged about what's going on with me; where I am in this crazy process of grieving, my thoughts, my hopes, my fears. Exposing myself to the world first means exposing myself to that person in the mirror. And at times, I don't even know who she is.





I know that I am no longer, and will never be, the person I was before Grey's death. In a lot of ways that makes me sad. I really did like who I was. But, I also like who I'm becoming. I also realize that Bill, too, is no longer who he was when he was the dad to four boys. I do know that who we become, because of Grey's death, is up to us. We can come out of it better than who we were, or worse. For me, worse is not an option, especially with three other boys who still need their mom. I plan to use Grey's loss to make me a better mom, a better wife, a better teacher, a better friend. I want to become who he would want me to be. I worry about who will come through that journey with me, and who will choose to stay behind.





I also know that I am now more consumed with Grey than I was when he was really here. Boy, how I took that for granted. I am consumed with his loss, his legislation, his everything. I see him in everything I do and everywhere I go. At times it's overwhelming and I wonder if I will always feel the physical heaviness that I feel in my heart.





I guess I'll start with his legislation. It has all come together nicely and rather easily. I need that. I need to affirm that Grey was here so that his loss could save countless other babies. That he was given to me so that I could teach others of the failing system we have here in Texas. A friend said to me that I don't have to be in the classroom to teach. She was right. I wonder at times if educating the country about expanding newborn screening is what I'm supposed to be doing. I wonder if I will ever love my job like I use to. I'm hoping I find a way to do both. Anyways, back to the legislation. Grey's HB and SB have passed through both committees, unanimously. It is now waiting to be heard on the floors. It also now carries the weight of Cystic Fibrosis in it's fiscal note. I hope that doesn't hurt us. I pray to God that Texas sees the need in it's 4 million dollar note. I thank Him for the people that have joined with us to make this possible. We have met so many new people and learned so much through this experience. I think I can honestly say that I am no longer "politically ignorant". All this, and Grey has only been gone not yet 5 months. Again, it seems like yesterday. But, it also feels like a million years.





I did learn that I can still love what I loved before, in the midst of Grey's loss. Last weekend's trip was incredible. I meet Carrie and her daughter Hannah. I was able to make Hannah a bear in memory of Grey and not cry. At one point, I had been pushing her stroller for a good 15 minutes before I realized that I will never be able to push Grey in his stroller again. But, I was able to do it, without thinking about it first. Hannah and her mom have helped fill part of the hole in my heart. It's nice. The Dave Matthews Band was incredible. I know many of you have reached out to them to tell them my story. I think that they closed with "Grey Street" both nights was no accident. Dave was extremely chatty and full of energy. It was so good to laugh. It was good to cry as they played "Grey Street" and "Two Step". It was good to share those moments with my two best friends. The Woodlands show was amazing, as was the Dallas show. The Dallas crowd was horrible. Some things never change.





So, as Mother's Day approaches I guess I just needed to take a second to evaluate my progress, and I have progressed. Grey continues to touch people everyday. Friday it was in the form of a letter from one of my very first student's mom. Today it was a new acquaintance in the bleachers. Tomorrow will bring something or someone else, no doubt. I do still find myself drinking orange Gatorade just because I miss him. I did cry a lot this week, in anticipation of tomorrow I guess. I made photo albums for my mom and mother-in-law for Mother's Day and suddenly realized that never will I have any "new" pictures of Grey. He will always be who he was in the pictures we have, never aging at all, just perfect, even in his broken body. I found myself getting irritated with every "Have a Happy Mother's Day" that was thrown my way. I'm so sorry if it showed. I know people mean well, but it just confirms that other peoples' lives continue to move forward, with or without Grey, and that has to be OK. I, however, am still stuck. Stuck in his smell. Stuck in his smile. Stuck in his laugh. Stuck in his loss. And that, too, has to be OK.





Happy Mother's Day to all those great moms out there; to those who still kiss their kids good night, and especially to those who are no longer able to. To Sabrina and Catherine - know I'll be thinking of you tomorrow as we struggle to be brave for our kids that are still here with us, secretly crying inside for the one that has left. It gives me comfort to know that I will not be the only one torn on this Mother's Day.

Thursday, May 7, 2009

I Get It

I'm watching Oprah interview Elizabeth Edwards. They are talking about Elizabeth being terminal and does that scare her. Elizabeth says, "Death looks different to anyone who has placed their child in the ground." Her words take my breath away and I start to cry. I get it.

Wednesday, May 6, 2009

Race Car


The Mills family also lost their daughter, Makinley, to Krabbes. Her dad is a race car driver. This is the car he drives. Sadly, both sides are full of Krabbes kids. But, what an honor to have a "stranger" honor our Little Man this way. Under every child's picture is their name, their birthday, and their "angel" day. Grey is in the top row, 5th from the left.

Thank you so much Mills family. My other boys are jealous! Riley said, "Oh, I want to be on a race car, too."

Sunday, May 3, 2009

My Weekend In Pictures

My real mom is really this giraffe.


This is Hannah and her mom, Carrie. Hannah has Gaucher's. Visit her site at http://www.littlemisshannah.com/. We built a bear in memory of Grey.


It doesn't get much better than seeing DMB at the Woodlands.



Then Melinda, Ceci, & I visited that big ass statue of Sam Houston on the way to Dallas.


Me & Melinda


How could you not want to pick his nose? I wonder how many hands have been in there? Oh no, Swine Flu! Good thing we had Warm Vanilla Sugar anti-bacterial lotion from B&BW.



And then I figured out that it really is OK to still enjoy the things I love, even though I've lost my Grey. DMB closed both shows with Grey Street. It was totally a sign from my Little Man.


Saturday, May 2, 2009

Thanks DMB for reminding me that I can still use colors bold and bright. I love you Grey Grey.
It soars inside my soul because of you, all the innocence that you inspire.
U rock my face off Dave Matthews!

Friday, May 1, 2009

Dave just played Grey Street for my boy.
Grey's bill passed thru the House committee today! On to the House floor next.