Time is a Locomotive.....

I was looking at Nicole's blog last night and I realized that I have not blogged in almost a week. Where did the time go? On Tuesday, April 21 we had the hearing for the House Committee for Public Health and then the next day was spent scrambling to make sure that the Committee members questions were answered. To my horror, Nicole, Adrienne and I started getting reports back from the Committee Representative's Staff that a lobbyist for the March of Dimes had been making the rounds to tell the Representatives that the March of Dimes was opposing "Greyson's Law", that we are anti- Cystic Fibrosis testing, and that we had never approached the MOD for their input in writing our bill!



We were SHOCKED.



I spent Wednesday on the phone all day trying to work out the misunderstanding and going toe to toe with the March of Dimes, a national organization, that has the resources to hire countless lobbyists and to throw up countless roadblocks.

In the end, the March of Dimes were also victims of the same lobbyists that were behaving so unprofessionally. The lobbyist left the committee hearing on the April 21st early and failed to hear the request by the Committee for a re-write of the bill to drop the language about Cystic Fibrosis that I never wanted in the bill from the beginning. So after the re- write, the main objection of the March of Dimes was no longer part of the bill.



I want to thank Morgan Sanders the President of Public Affairs for the Texas Chapter of the March of Dimes for her reaching out to Nicole and I about the misunderstanding and removing the opposition from "Greyson's Law" by the March of Dimes.



The rest of the week last week just flew by. Wednesday we also found out that the Senate Committee had scheduled the Senate version (SB1720) for it's hearing on Tuesday April 28th in the Senate Chambers at 0900. Friday was spent visiting every Committee member for the Senate Committee of Health and Human Services to lobby them and answer their questions about "Greyson's Law".

The Locomotive that is time is charging ahead.

I Almost Forgot!

You know, you would think that I would be better at remembering all of the people that I owe so much too. All of the friends and family that have been a complete and unwavering support to Nicole the boys and I. Yesterday, my head spinning, I sat down at my computer to express to all of you how much your love and support means. I will have to be honest, I fell ASLEEP while I was writing.

To all of my family, my heart swells when I think of how all of you have been there and supported me, just by being, smiling at me, calling to check on me, and listening.

Adrienne, for being just and perfectionistic and anal retentive as I am, without you Baby Sister, none of this would happening. Together, we make a force to be feared.

Jeanie, dear sis, for getting up at the wee hours of the morning to be there. And your love!

Larissa, for being the Momma Bear that protects and worries about us so.

To all of my Brothers - in - Law, thanks for letting me in, loving my sisters, and sharing precious family time for the journey that we are now all on.

Erin, for being there! A truer friend there has never been.

Mom and Dad, what can I say? Thank you.

Mom Parks, you have always been there to help Nicole when I'm working and loved me without question. I love you dearly.

Dad Parks and Sandy, for giving me the greatest gift anyone has ever given me.

All of you named and not, will always be a part of me. I have changed over the last 4 months and I am continuing that journey. I'm not sure exactly who I will be at the end, but I will definitely be better because of I have all of you.

I love you all.

Bill.

A Day at the Capital.....

We just made it home from Austin, it was a hectic morning. We stayed the night in Austin last nite so that we wouldn't have to rush to get the boys and ourselves ready and still brave the Austin morning traffic. The morning progressed slowly, we had our first committee hearing for HB 1795. The hearing was before the Public Health Services Committee. First the we were told that usually only 5-7 members of the Committee usually show up for the hearing.

It is a tribute to all of you that have contacted the members that ALL but 2 of the 11 members were present for the hearing on HB 1795! Thanks to everyone that emailed the members!

Second, the hearing on HB 1795 lasted for over 2 hours! The KXAN News 8 (thanks Jenny) had a crew there taping the hearing. And just as we thought, the members were totally ignorant that the new born screening program falls so short of the mark. They couldn't believe that HB 1795 isn't even about testing for Krabbes Disease, that we are pushing for screening for other diseases to protect infants from harm.

I want to send out special thanks to Rep Paula Pierson and Committee Member Rep. Zerwas, MD. for their very skilled aid in driving home to the Committee members that HB 1795 will SAVE Texas millions in just medical bills incurred while trying to diagnose these children when a new born screen could have in the first days of life.

Please visit Nicole's Blog, she was awesome! I am so proud! She has her testimony up for everyone to read. The archive of the hearing can be seen by going to http://www.house.state.tx.us/committees/list81/410.htm

and clicking on the quick link for broadcast archives for today's date HB 1795.

I just wanted to put my testimony in this blog so anyone interested can read it.

Honorable Committee Members,

My name is William Morris and I am here today not only as a concerned parent but as a Pediatric nurse with 13 years of experience. I am asking for your help in protecting our most precious resource in the State of Texas, our children….. Every year about 400,000 infants are born. Every newborn is screened for inherited, treatable diseases to prevent profound injuries such as mental and physical disabilities and even death.

I’m here to tell you the story of two of my children. My 9 year old son Seth stands as a shining example of the success of newborn screening. At 11 days old, we received a call that one of the newborn screens came back abnormal. 2 days later, Seth was diagnosed with PKU. Today Seth is a totally healthy. Without newborn screening, Seth would be severely mentally disabled and handicapped, his medical care costing up to $700,000 dollars annually. Because Seth is healthy, our family does not require State assistance for his medical care.

On Dec. 12, 2008, my 11 month old son, Greyson William Morris died in my arms. Greyson also had a treatable disease. He received the same newborn screen all Texas infants do. Tragically the test that could have detected his disease was not part of that screen. My family and I have resolved to make sure that no other family has to lose a child to a detectable, treatable disease.

Texas only screens for 27 out of 29 mandated tests. The 28th is Cystic Fibrosis. It was passed in 2005 as HB 790 and is awaiting funding. The ACMG (American College of Medical Genetics) recommends the reporting of an additional 25 diseases for a total of 54. In Texas we are truly failing children who suffer from these diseases. Not all of the diseases are as manageable as Seth’s but the KEY is to detect them and begin management BEFORE the onset of symptoms. As a medical professional, I can tell you we will never have treatment options for all of these diseases unless we screen for them, diagnosis them, and study them!

HB 1795 is vital legislation, drafted with the cooperation of the Dept. of State Health Services, but it is a small step in a much more complex journey. Using the technology that the State Lab now possesses, HB 1795 would add 20 additional diseases to the present newborn screening panel. It makes no real sense to exclude these additional tests. The need for additional testing to protect our infants in Texas is right before you and can not be ignored any longer. Both of my sons prove it.

HB 1795 also creates an Advisory Council to guide and ensure the Texas newborn screening program is kept abreast of the future recommendations of the ACMG and therefore ensures Texas will assume a more proactive approach in the future.

Thank you for your time and consideration. I strongly urge you to vote YES to HB 1795. Not because it will lessen my families pain, but because it is your duty to protect all infants born in the State of Texas!

Are there any questions?

Cardinals are 1-1-2

Seth had another Little League game on Saturday at 2:00pm against the other undefeated team in the Peewee League. I was bummed that the Friday game got postponed until Saturday because of the rain. I was as nervous as ever I was. I kept calling Nicole to find out the score. The kids were leading most of the game. In the last Inning of the game, the other team suddenly found their bats, and they tied! The Cardinals did a GREAT job! I am so proud!

Go Cardinals!

Trying not to Panic...?

Today is Thursday April 16, 2009. Yesterday we found out that the Public Health and Services Committee will hear HB 1795 on Tuesday April 21, 2009 at 8:00 am. This is the first step of the journey for "Greyson's Law".

This is what we have been working toward ever since Greyson took his last breath in my arms. Toward making some good come out of his death.

For three weeks there was no activity at all. I was calmly corresponding with two of the experts that have been a source of information for us throughout this procedure. NOW! Hurry up get people to confirm that they can commit to being present for the hearing. That they are willing to testify before the Committee and answer questions. Write my presentation, put into works all of the emotions that have bubbling in by heart. Put it together in a way that is coherent and intelligent. So that I don't only look like a grieving Father, so that I look like I have my facts right and concise. That I can prove to the Committee members that to not pass HB 1795 (Greyson's Law) would be tragic and a moral outrage.

So many thoughts bouncing around in my head. Too many to think.

Cardinals are 1-1-1!

Seth's team played yesterday. First game after the Easter break. Our Cardinal's have been trying to find their way. I was a bit worried about the game. They were playing the only undefeated team in the PeeWee division of the Little League. I was worried that the game would be a blow-out and that the Cardinal's would start to despair about their status of play.

When the Tigers scored 2 runs quickly in the 1 st inning, I feared the worst. The kids are still trying to come together as an team. They really needed to have a good showing.

Would you believe that the Cardinal's showed me something. Not only did they settle down after the start of the 1 st inning, but the actually had a really good chance to win! The game ended in a tie game. They tied the only undefeated team.

Great Job Cardinal's! Way to play ball!!

Easter 2009

Today is the 12 th of April.

4 months ago, at 2:08 pm my beautiful youngest son, Greyson took his last breath in my arms with his head over my heart.

4 months.

Easter is the day that we Christians celebrate the death and resurrection of Christ.

When Pastor Mark Simpson came out to our house to pray with us for God's help in dealing with Grey's death, told me,

"It's okay to be angry with God." He gave me a big bear hug and smiled. "God is our Father and he can handle it. Just as you handle it when your boys are mad at you when they don't get their way. He understands."

He hugged me again and said, "We humans have a choice, to love or not to love. If we love, we have to accept that we will have to hurt also, because this life ends. We can love hard or not. If we love hard, we must be ready to hurt hard too.

Today, his words echo in my ears. The rage in my heart quivers and threatens to burst forth. God gave us his only begotten son to die for our sins. My anger threatens my sanity, God may have let his son die, but the coward didn't have to go without him except for 3 days and then he was reunited with him for eternity.

Nicole, the boys and I have to live the rest of our lives without our Grey. Never to touch him again, snuggle him, smell him, talk to him, watch him grow and discover the wonders of life and this world.

It has only been 4 months, a lifetime for us.

Yes, I have anger, and I can only hope that Pastor Mark was right and that God can take it and understand.

I hope it isn't a sin to be angry at God for taking our Grey.