What To Do Now?

I really didn't think that I would be at this point yet. Done.

Things have gone amazingly well. The support that Nicole, the boys and I have received from our family and friends is overwhelming. It just dumbfounds me. I am so thankful to everyone that has shown such love for Greyson, and for us because of his death. It just makes my heart swell with emotion. It is a very humbling experience to be faced with the unabashed love of others. Your family, you just expect and take for granted, until an experience like this. But friends? Most of us go through our lives not really knowing how much our "friends" truly care. Greyson's death has change that for me. It has changed me, completely.

Completely.

The first few weeks after we lost Greyson, Nicole and I started talking about what we were going to do next. Before we knew that Greyson was terminal, Nicole had signed up to get her masters in education; we were determined to not let Greyson's illness stop us from continuing our lives. We were going to handle it and still accomplish things too. With Grey gone, she was thinking of proceeding as planned. The course is supposed to start sometime in August, I think. However, she was very concerned about me in particular, I am no longer a "Mister Mom." For the past 10 years we have made the kids our priority. Nicole's job so that she is off when the kids are off, working when they are in school. Me, we decided would change my schedule so that none of the boys had to do daycare. We had experimented with daycare with Luke, but Seth's PKU and dietary restrictions just made daycare an impossibility. Too risky. So my schedule was changed to make it so I could be home with the younger kids while Nicole and the older boys were at school. Nights and weekends. "Mister Mom" the rest of the time. Watching first, Seth, then Seth and Riley, then Riley, then Riley and Greyson, then just Greyson. Now, "Mister Mom" is unemployed, obsolete. Nicole wanted me to find something to do with myself. Either change my schedule or another project to focus on. She suggested that I go back to school. I had always talked about completing my Nursing education. She felt that now, was the perfect time. I had to admit, she made sense. No real good reason not too. But, I dragged my feet. Too numb. No motivation. I kept making excuses as to why not. I think that Nicole knew, as I did that I wasn't ready. I needed time.

I know that I really worried Nicole those first few weeks after she and the boys all went back to school after the Christmas holiday break. I just shut down. I was obsessed by researching Krabbes Disease and why Greyson wasn't screened. But mostly, I just sat. On the couch that I was laying on when Grey died in my arms, the small couch that I sat holding his body waiting for the funeral home to come, in his room on the floor. Tears. Lots of tears. I think that the time alone was important. Nicole didn't agree, but she let me do what I wanted. I don't know. I have always been a person, probably because I was raised in a house full of girls, that has never run from my feelings. I have always turned and faced them.

Just as the depression started to take over, my baby sister Adrienne took charge. I had mentioned to her in the last week of Greyson's life that I needed his death to change things, to matter. To her credit and I will never be able to thank her enough, she drug me out of the house and up to Austin to a meeting with the Chief of Staff, Maureen for Representative Paula Pierson. The Legislative secession was just starting and Texas only has secessions every 2 years. So started the journey that we have just completed, with great success! Greyson's Law! When I waded into the quagmire of the political system, a strange thing happened. The fact that I was fighting for Grey's memory, to make his death mean something, talking about him, telling people his story, I didn't have to let him go. I could still hold onto him.

Don't get me wrong, I am proud, completed somehow, because of our success in establishing Greyson's Law. Because of Greyson, 150 babies a year will be identified and receive the care that they need before it's too late. That's HUGE! What a legacy! Nicole and I feel that, this is why God gave Greyson to us.

What now? I'm feeling lost again. I can feel the depression lurking in the shadows, waiting to pounce, to smother me. I have a decision to make. I may not want to, but I do all the same. I can't remain lost. Nicole and the boys need me. I owe them more.

I owe Greyson more. He did his part so well. He was always happy, and loved us and life completely. He took what he got and made it special. I have to do the same. I have to be strong. I have to LIVE! I don't want to be just the father that lost his baby boy. I want to make Greyson, Luke, Seth, Riley and Nicole proud of me.

I want to be proud of me.

I will always be Greyson's Dad. Forever!

Something is happening. I don't know what, I am almost scared to acknowledge it, for fear that it will disappear.

An itch is starting. Nicole has been talking about me going to school again. Maybe I can make a difference too. Maybe my legacy is supposed to be more than ..... Greyson's Dad.

What do I do now? I wonder. This itch is one that I just might have to scratch.......

Greyson’s Law, What it Will do for Infants in Texas

When our son Greyson died on Dec. 12, 2008 one week before his 1st birthday, my wife Nicole and I decided that we wanted his death to stand for something. At first our goal was to make sure that no other baby born in Texas was allowed to die from Krabbes Disease because of the lack of newborn screening. After researching newborn screening in Texas, we were shocked to find that Texas was in the bottom 5 states in the nation based on the number of diseases that infants are screened for at birth. The recognized authority, the American College of Medical Genetics, (ACMG) breaks diseases into two panels, the “Core 29” panel of 29 diseases that are classified as Mandatory for testing and the “Secondary Panel” of 25 additional diseases. This secondary panel consists of diseases that are deemed significant and, in most cases, can at least be controlled if detected before onset of systems. Unfortunately, at this time, Krabbes Disease is not included on any of the ACMG panels due to insufficient research of screening and treatment.

At this time, the state of Texas tests for only 27 of the Core 29 panel and none of the secondary panel. Despite legislation in 2005 with HB 790, Texas does not test infants for Cystic Fibrosis and only tests for select diseases, despite having the potential for screening for an additional 20 diseases with the technology presently owned by the state lab. For some reason the equipment was programmed to screen for a modified panel instead of the full panel that the Tandem Mass Spectrometry Machines are capable of. No review board or advisory panel was created to ensure that the state remained current to the ACMG’s recommendations or that current mandates from the Texas Legislature are being met. Nicole and I realized that much had to be done to the Texas newborn screening program to fix a broken system, a system that is failing babies, approximately 150 babies each year.

That’s how many babies that are born with one of the diseases not tested for in Texas each year, 150!

Greyson’s Law (HB 1795) seeks to improve the Texas newborn screening program in two ways.

First; it appropriates $790,000 dollars to pay for reprogramming of the Tandem Mass Spectrometry Machines and training for State Lab employees to add 20 diseases to the present screening program using the same samples (blood spots on filter paper) already collected from infants born in Texas hospitals within the first 24 hours of life. It just increases the number of diseases that are detectable by the machines at the state lab when testing is done. Some of the funds are also utilized by the Dept. of Health to ensure comprehensive case management by nurses on staff to ensure that each child receives all care and treatment necessary to ensure the best quality of life possible for each child based on their diagnosis.
Early detection also insures that precious time, resources and money will not be wasted on differential diagnoses. The Honorable Representative John Zarwas, district 28, who is also a medical doctor, stated in the hearing of the Public Health Committee, that because 54% of Texas babies are born into the Medicaid system, HB 1795 “saves so much money for the state, it shouldn’t even have a fiscal note attached to it.”

Second; HB 1795 creates an Advisory Committee made up of specialists in new born screening, consumers, representatives from the State Lab and the Texas Hospital Association to assess and make recommendations for additions to the screening program to keep Texas proactive in the protection of Texas Infants. This advisory committee is based on the system used by the state of Minnesota which leads the nation in new born screening with 67 screened diseases. I am most proud of this portion if Greyson’s Law. As we all know, new technologies and testing procedures are being developed every day. It is very important that these new methods and technologies be assessed and vetted to determine which will make to best use of State resources to add diseases to the Newborn screening program. It is my hope that, after the addition of Krabbes’s Disease to the secondary panel by the AMCG, Texas, through the Advisory Committee, will also screen for the disease that took my son’s life.

On Friday June 19, 2009 the Honorable Gov. Rick Perry signed HB 1795 establishing Greyson’s Law, effective September of 2009.

William C. Morris
Greyson’s Dad

What's Wrong With You?

I have been hearing that alot today. I think that was the first words out of Nicole's mouth when I called her.

Until she asked, I didn't think that I was having any trouble at all. I mean, I feel a little guilty about crashing yesterday when I got home at 5 pm after working since the night before. I feel like I let the boys down and Nicole too. I didn't get a thing done at all. Just SLEPT. I hate to sleep. I have always felt that it is a huge waste of time. But it always manages to catch up with me. I guess that it was because my schedule has been so different this week, maybe it was the fact that I have started working out on the Elliptical Machine at the YMCA. I don't know.

It has been a hard week. Extra work so that I can be off on Sunday for the BBQ. Working out, thoughts about Grey. I remember being upset with Nicole on Mother's Day, the way she was acting. How upset she was. How distant she was. I couldn't reach her, couldn't make her talk to me. I needed to know what was going on in her head. The closer we get to Father's Day tomorrow, my first Father's Day after Grey's death, I think that I understand.

This morning, I stopped at a McDonald's to get a Egg McMuffin meal. The nice lady wished me a "Happy Father's Day, Sir!" I wanted to SCREAM at her! HOW DARE YOU! Don't you know that I am in PAIN? How SAD I am? How I don't think that I will ever enjoy another Father's Day the rest of my life? Ever?

Father's Day was my favorite ever since I became a Father. NEVER AGAIN!

Nicole,

I'm sorry that I didn't just let you be. I sorry that I didn't try to understand better. I get it now. I will try to do better. I will enjoy the party tomorrow. I will.

I Love You!

I Finally Let It Happen....

I have been working my butt off. On June 1st, I got a call from my Nursing Agency asking me if I could help out while one of the other nurses on my weekend case was on vacation for the whole month. For the past 10 years, summer has always been the time that I have picked up as many extra shifts as I can each week to help us make it thru till Christmas. It was hard to make myself say yes. I just haven't had the energy (motivation) to work my normal shifts much less pick up extra. Probably a symptom of depression. Any rate, I forced myself to agree and I have been working doubles on every Wednesday.

So I have been working extra. I guess that it has been going well, Mostly. The bad side effect has been that I have been completely useless at home. All I want to do is completely check out when I am at home. Totally Veg out. Just not do anything that I have to do.

I also totally missed marking the 6 month anniversary of Grey's death. Not that I forgot about it or didn't spend my entire day thinking of Grey. Replaying our last moments together over and over...

I mean that I felt no drive to do, anything.

I felt like just shutting down. Just sitting on the couch holding his urn. The couch were he slipped away... sitting on the small couch were I sat holding him, waiting for the funeral home to come. Sitting.

I didn't feel need or impulse to do anything else.

I didn't Blog. I didn't play games. I drove Nicole nuts. She needed to accomplish things. She totally didn't get what was up with me.

Sooo. I did manage, after irritating my wife to drag myself up to go with her and the kids for errands. I'm sure I was a great joy to be with. We also went to my sister Larissa's house. It was good to be able to sit and see the boys play with their cousins.

6 Months. On June 12, 2009 at 2:12pm it was 6 MONTHS.

It feels like a lifetime ago since I held my son for the first time. Since I basked in the glow of his loving gazes or felt him melt into my arms after I picked him up. Forever since that last smile. The last time he recognized, "Oh! Ah! Da! It's you!"

A lifetime since I last dreamed of Greyson.

It feels just like yesterday since I heard My Baby Boy take his last breath. Felt his last heart beat. Just yesterday since our perfect life changed forever. Just yesterday since a huge part of my heart died and crumbled into dust, leaving a gaping hole.

6 Months.

We, I, Love and miss you Grey.

Thank You for Greyson's Legacy

Please don't misunderstand me.

I am relieved and inspired that we have done, what some told us was impossible. That Greyson, my son, has a legacy. That, by the Dept. of Health's own research, an average of 150 infants born in Texas, with detectable inherited diseases, will be identified at birth each year.

I promise, I have allowed myself to bask in the accomplishment.

Those of you that truly know me, know that once I set myself to accomplish a task, nothing stops me. I am proud of everyone that had a role to play in making "Greyson's Law" a reality.

Adrienne,

For not letting the heart-broken musing of a father, your brother, remain musings. Without you, it would have been too late to accomplish our goal this legislative secession.

Nicole,

For being there with me. For loving me and having the drive to push harder the harder it got. For having the ability to continue and encourage me to continue when I ran out of my own drive.

Luke, Seth, Riley,

For being wonderful brothers and sons. Your understanding that Mom and Dad had to do this.

Larissa,

For loving me and my boys so much. You will always be our Momma Bear. For always being available to help.

Jeanie,

For your support and energy. Your commitment to helping in anyway needed.

Maureen,

For helping and fighting for Greyson's Law before anyone else. You are a blessing and will always have a special place in our family.

Rep. Pierson,

For being a feisty Grandmother and fighting for Texas babies.

Senator Carlos Uresti,

Your passion and professionalism is refreshing.

Jacque,
For sharing your love, faith and energy with us. You inspired us. You have definitely made your Hunter proud. Nicole and I feel blessed to know you and count you as a friend and member of our family.

Jim and Jill Kelly,

For helping us in all of the little things, the letters to lawmakers, the phone calls, and your kind thoughts.

Erin Fellers
For being there in Austin to support us when even family couldn't. Your complete and true friendship is a gift I will always cherish.





For countless others, friends and family, that have been there and done anything possible, even if it was just listening, that I have not remembered for being there.

A Father's Thanks...

I just wanted to share the Press Release from Senator Carlos Uresti's Office:




News Release from the office of Senator Carlos Uresti

FOR IMMEDIATE RELEASEJune 1, 2009CONTACT: Mark Langford at 512.463.0119Clifton Walker at 512.463.0714

Uresti gets the most out of the 81st Legislative session

AUSTIN — The 81st Legislative Session adjourned 'sine die' on Monday, ending a productive regular session for Sen. Carlos Uresti and the people of Senate District 19.
"It was a session of twists, turns and surprises, mixed with its share of partisan squabbles and House-Senate spats. Let's just say it was colorful," Uresti said. "All that coincided with the most ambitious agenda I've ever carried. I was a challenging session, but I got a lot done."
Uresti passed the last bill of the session, a child protection measure creating a statewide Blue Ribbon Task Force that will develop a strategic plan to combat child abuse; and the Texas Medical Child Abuse Resources and Education System, a program that will provide $5 million in grants to develop and support regional efforts to diagnose and treat child abuse and neglect.
Working with state leaders and other members of the Bexar delegation, Uresti accomplished many of his legislative goals, despite a contentious battle over a Voter ID bill that killed a number of bills in the House.
His major initiatives included a bill to speed up construction of the Texas A&M University-San Antonio campus, protect Laughlin AFB and create new health care and child protection programs.
Passage of the TAMUSA bill freed up $40 million in tuition revenue bonds, allowing construction on the campus to proceed. By the fall of 2011, a modern campus will replace the overcrowded classrooms that students are currently using at a former elementary school.
"It has taken ten years to transform TAMUSA from dream to reality," Uresti said. "Now it won't be long before a modern, new campus is available to help young people accomplish their dreams."
In the budget process, Uresti helped secure more than $16 million in operating funds for TAMUSA, $4 million for a project to strengthen Medina Dam and $12 million for additional face-to-face visits between child protection caseworkers and children at risk for abuse and neglect.
Another legislative priority was protecting Laughlin AFB in Del Rio from encroachment. Uresti's bill establishes a five-mile buffer around the base and creates a Regional Military Sustainability Commission to review the compatibility of proposed development projects within that area.
"The idea is to manage growth around the base in a way that does not interfere with Laughlin's ability to maintain its current operations and expand its role in the future," he said.
Uresti was directly involved in the development and passage of a number of other bills and served as a co-sponsor on many others. His legislative accomplishments include:
Child abuse reporting – Mandates that the Department of Family and Protective Services release findings and information about children who have died of abuse or neglect; such disclosure will promote public scrutiny of abuse cases that result in death, leading to improvements in child welfare policy and practices.
Veterans' tax exemption – Enables the state to implement a 2007 constitutional amendment that makes veterans who are 100 percent disabled from military-related injuries exempt from property taxes.
Greyson's Law – Requires that Department of State Health Service to expanded its newborn screening program from 29 to 49 disorders; named for Greyson Morris, who died just before his first birthday of Krabbe disease, which affects the central and peripheral nervous systems.
Mental patient transportation plans – Requires state mental hospitals to develop a written transportation plan when a patient is discharged or furloughed; spurred by the death last year of Raquel Padilla, who was found dead several days after San Antonio State Hospital workers dropped her off at a downtown bus station.
The Health Care Access Fund – Pays the tuition of doctors, dentists, nurses, nurse practitioners and mental health professionals who agree to work in underserved communities for up to four years; program will be funded by a tax on smokeless tobacco.
Court Appointed Special Advocates – Grants state employees up 60 hours per year of time off to be a CASA volunteer. The organization trains and organizes people who are appointed by judges to oversee and advocate for abused and neglected children as they move through the legal and social service systems.
New courts for Bexar County – Creates three new county courts at law to help address a significant backlog of cases that are awaiting trial. New courts have not been created in Bexar County since 1999.
Translators and interpreters – Requires the creation of an Advisory Committee on Qualifications for Health Care Translators and Interpreters; with about one-third of the people of Texas speaking a language other than English, the bill is designed to improve the quality of language interpretation in medical settings.
The House and Senate adjourned their 140-day regular session Monday with sine die motions – Latin for 'without a fixed date' to reconvene.
Carlos Uresti is the senator from State Senate District 19 representing over 750,000 residents throughout a 23 county area stretching along the U.S.-Mexico border, from San Antonio to El Paso County, including all or part of the following: Bandera, Bexar, Brewster, Culberson, Crockett, El Paso, Edwards, Hudspeth, Jeff Davis, Kinney, Loving, Maverick, Medina, Pecos, Presidio, Real, Reeves, Sutton, Terrell, Uvalde, Val Verde, Ward, and Winkler counties. Covering 55,000 square miles, the district contains 62 school districts and spans two time zones.

Somebody Pinch Me?

I just wanted to ask everyone for a little patience with me. I will blog to thank everyone involved in this amazing journey that we have taken for the last 5 months and 3 weeks, but right now, ... I just can't believe it.

The Speaker of the House has signed the House version and we are just waiting on the Lt. Gov to sigh the Senate version. I'm just waiting to know that every i is dotted and t is crossed. I will share all of my thoughts and feeling soon.

Until then Love to everyone.