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

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.

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:

Jamie.Dudensing@ltgov.state.tx.us

(512)463-0001.

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".

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.

In My Life

To Grey Grey,

In my life, I love you more.

Love,
Forever Your Mom

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.

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.