Committee to Hear HB 1795

The Public Health Committee has decided to hear Greyson's bill. It will be heard Tuesday April 21, 2009 at 8:00 a.m. Everyone that shows up in person at the Capital, will be able to sign a witness list to show their support of the bill.

Thank you to all those who have helped Bill and Nicole make this happen! Lives will be saved if Grey's Law is passed!

A Dad's Perspective

In the past couple of weeks Bill, Greyson's dad, started a blog.  In it he intimately shares his grief and struggles in dealing with the Greyson's death.  Both Bill and Nicole have shared so candidly, their loss and their grief through their blogs.  

Through my research on Krabbe, I have found many sites that are updated by the mother's of children diagnosed with Krabbe.  I have only been able to find one other father in Australia who journals about his journey.

Please take a minute and check out his blog.  It is a rare glimpse of a man's perspective on loss and life.    

Making the impossible, possible.

I love our bedtime routine with Bailee.  Being that she is 18 months, she still loves to be rocked before being put into her bed.  I sing my heart out as I rock her.  My tune is terrible but she seems to enjoy it.  In her own gibberish, she will ask for me to sing.  I relish this time and know that before too long she will no longer need me to rock her.

Our routine has changed dramatically since 12-12-08.  Every evening since Grey has passed away, I do not rock her the same.  I begin singing and rocking her gently and soon, I find myself staring at her, smelling her and taking her scent in, and running my fingers through her hair that is freshly shampooed.  There is not one evening that I don't find myself thinking of Grey and his family.  I hold on a little longer, I rock a little more.  There is not one evening that I have wished she would go to sleep quickly.  

As I rock her tonight, I again thank Grey for the change in me.  Because of Grey, I am a better mom, and because of Grey I realize the frailty of life and just how precious it is.  

When things happen or don't go right for me, I think of Grey's family.  I think of what they endured during his illness, and what they continue to endure after his death.  I find myself thinking how the things that once upset me, are really not that important and how little those things compare to the magnitude of what his family is going through.  They are survivors.  They are surviving the unbearable.  

It makes me wonder, does God really give you the strength to endure?  They are a living example of the impossible being possible.

The Love of Humanity.

Our capacity of love, is amazing. As human beings, we band together and support each other when it is needed. While I wish tough times would not fall on any of us..... they do. It is the support and love of others though, that will see us through.

Through Greyson's death, I continue to be amazed at the out pouring of love from all, including complete strangers. The fundraiser yesterday was another reminder of how many people Grey continues to touch. It was a huge success! It was amazing to see the amount of people there. It was awesome! When I think about all the people that pulled together to pull of this fundraiser..... my heart smiles.

There was a woman from San Antonio there with her two kids. She is a follower of Nicole's blog. To know, that she felt compelled to be there, is incredible. During the event, I found myself taking a step back and watching the crowd. There weren't words to describe the feelings I had.

I know the word is spreading, I know we will improve newborn screening here in Texas. I had proof of that yesterday. After the fundraiser, Brayden's friend Riley, who is also one of Grey's older brother's, came home with us. I needed to run to Kohls to get a picture frame, needless to say.... the two boys were not thrilled at all, and both made sure to let me know that they did not like Kohls.

As we were in line to check out, they started talking to a lady waiting behind us. They went on and on about how they are in the same class, and that they were spending the night together and were so excited about it. Out of nowhere, Riley says, I lost my brother, but he is in a better place. Tears immediately came to my eyes. You can only imagine the look on her face also. I turned to her, and briefly said...... (the lobbyist was coming out in me) yes, he did, Grey was 11 months old and died of Krabbe Disease. Can you believe..... it could have been screened for and very likely treated, but Texas does not screen for it! The lady's face immediately lit up and she said..... Oh, my goodness, I heard about his family, and saw them on the news! That is horrible, and we have to change screening here in Texas!

There you have it....... proof our message is spreading......

Another article about Greyson......

I found another wonderful article about Greyson Morris.  Check it out here.

Greyson Morris Made The News!

One huge leap has just been accomplished in our fight against Krabbe Disease.  Today our local paper had a great article about Greyson and his family, read it here.  And then tonight, Greyson's parents were featured on News 4 WOAI here in San Antonio.  Today was a huge day!  The word is out, and Greyson continues to touch lives. The number of individuals that now know about Krabbe Disease has multiplied, here in our area. See the following link here for the story and video!

Greyson Morris Benefit

Please visit the link for information on an upcoming benefit for the family of Greyson Morris. 

http://www.greysgift.com/Greys_Gift/Benefit_Event.html

For information on this precious angel and the courageous battle he fought with such a horrible disease, see my previous post titled Life is short.

Grey's Challenge

Today, I attended the most inspiring memorial service.  It was a beautiful celebration of Greyson's life.  At the end of the service, we handed out balloons, and released them all at once. As the balloons floated towards the heavens, I felt an overwhelming peace.  I pray and hope that Grey's family can find peace.  Those in attendance, also left with a card, and on one side was a picture of Grey, and on the other, was Grey's Challenge.  It is too wonderful not to share.  

Grey's Challenge

"Live today, like there's no tomorrow"

"Teach us to number our days aright, that we may gain a heart of wisdom."

Psalm 90:12

Step #1

Develop attitudes and priorities that understand and respect the brevity of you life.

Step #2

Commit yourself to seek and to seize opportunities to live more for the benefit of others than for yourself.

Step #3

Inventory your personality and make alterations to the things that hinder the expression of your new attitude.

Step #4 

Remind yourself everyday that, life that is abundant and full can only be lived one day at a time.

I accept the challenge and I hope you will do the same.  

Saying Goodbye.... For Now.....

Tomorrow is Greyson Morris' memorial service.  My heart hurts, thinking about his family.  We celebrate his life.  We grieve with his family.  We shed tears for what might have been.  We shed tears of anger.  Anger at such a horrible disease.  Anger that it is not screened for in our state. But we have hope.  Hope for the future of newborn screening.   

This precious boy has touched so very many.  He will continue to touch so very many from heaven.   

We will fight for Grey.  We will join the forces.  We will become soldiers raging a war against Krabbes disease.  We will fight to get newborn screening required for fatal diseases.  We will not quit, we will fight until the end, until victory, just as Grey did.    

Greyson Morris has earned his wings......

It is with a heavy heart that I say, Greyson Morris earned his angel wings this past Friday. He peacefully went to sleep on his daddy's chest, his favorite place to be.  Please keep Bill, Nicole, Luke, Seth, and Riley in your prayers.  They have a special angel watching over them.

It is unbelievable the amount of lives that Greyson has touched.  I just know he will continue to touch lives from his heavenly home.  I would like to post a prayer that another teacher sent out upon the news of Greyson's passing.

Lord,

 

Would it be ok to talk to Greyson for a moment?

 

Greyson,

 

Although you were not here very long, you managed to touch a lot of people.  Your smile, character and courage are something we as adults often strive for but never achieve.  Though you are gone, you will not be forgotten, and In fact you look over all those you left behind.  You are whole again as The Heavenly Father who made you does to all of his angels.  You will be waiting for your family, and when they arrive, they will be greeted by that same smile, character and courage they remember so well this painful day. 

 

Greyson, you now know your purpose here with us for The Lord has told you and explained to you all that is still a mystery to us, so that when we arrive, you will share in that and the explanation will be clear!

 

Greyson, there are many heavy hearts right now and you know that you can and will touch them all.  Whenever they are sad, you will be there in a fleeting memory! Whenever they weep, you will be that distraction to draw them away from their pain!  Most importantly, when it becomes too unbearable for your family, you will simply turn to your right and ask God to lift that burden and he will carry them!

 

Thank you Greyson for touching so many…. and Lord…Thank you for sending him here!   

 

In your Heavenly name we Pray,

 

Amen