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.    

Greyson's Law HB 1795

Today, Nicole came into my classroom with papers in her hand.  She handed them to me and it took everything I had not to crumble into a heap of tears. What she handed me was a copy of the House Bill for Greyson's Law.  I couldn't believe that it was right in front of me in black and white.  

I picture Greyson doing a little dance up in heaven.  Oh, I just know he is so very proud.  Thank you Greyson Morris!  You are changing the world!

We are one GIANT step closer!  Soon all babies born in Texas will be screened for Krabbe Disease!  

Follow this link to view the bill. 

Follow this link to contact the committee members we need to support the bill.  Please include the HB number in your email.  

We need your support!  Please help us save other children!

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.

Contacting Austin

There has been a lot of contact made with lawmakers and lobbyists in Austin.  They are in session and now is the time to get things moving on improving newborn screening in our state.  I spoke with Bill, Greyson's dad, about it a little this past week.  It turns out that the funds are just not there to support the cause.  While the support to pass these new requirements is there as far as yay, or neigh.

Money talks.  Money makes the world go round.  Apparently, money is what it is going to take to improve newborn screening, and lots of it.  It looks like the funds will have to come from "big" people with "big" money.  The funds aren't there on the state level.  So..... newborns will continue to be born here in Texas without being screened for 16 additional diseases.  

I met someone since starting the blog.  Her name is Carrie.  Her daughter Hannah is fighting for her life and has been diagnosed with Gaucher's Disease.  They live her in Texas also.  You can read her blog here.  Hannah is having to have extensive therapies, transfusions of different sorts, and tons of other things.  Her family doesn't qualify for assistance with the medical expenses.  Like most of us, they are not wealthy.  They are your average Americans who have worked hard all their lives.  A particular treatment Hannah will begin in a week or so, costs approx.  $30,000/yr. for infants and up to $250,000.00/yr. as an adult.  Where is the fairness in all of this?  Also, insurance has lifetime maximums.  Hannah will be meeting her maximum quickly.  What happens then?   

I don't get it.  I don't understand how price tags can be put on lives!  I think the biggest thing that amazes me... I have gone my entire life unaware of this nonsense.  My naivety was an understatement.  Becoming aware of all this craziness is so very scary.  My ideas of the world are ever so gradually changing as I see what is happening.  

So rare.... yeah right.

A storm of emotions are brewing inside of me.  Anger, frustration, disbelief, deep sadness..... are what I am feeling tonight.

Today I found out that precious little Zoe from Arizona, passed away just after midnight, from Krabbe Disease.  Then I found out about another little girl in Arkansas who just turned 1. Harlee was diagnosed with Krabbe on December 15th.  

I don't understand it.  Why in the heck do these precious babies keep having to die.  Why in the heck can't ALL 50 states test for ALL diseases.  The capability is there.  

I am outraged.  I can't comprehend it.  I can't wrap my mind around it.

Go ahead, research Krabbe Disease on Google.  The thing you will see most often is how freaking rare this disease is.  REALLY?  Go tell that to Judson's mom, Greyson's mom, Zoe's mom, Harlee's mom, and the hundreds of other mothers out there who has or had a child diagnosed with Krabbe Disease.  Yeah, it is extremely rare..... 

I sit here, tears rolling down my face, rolling my eyes, in disbelief.  How could such a cruel disease be allowed to continue to attack our precious children?  

This is why we will continue to fight.

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.