Wednesday, April 29, 2009

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.

Wednesday, April 22, 2009

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.


Tuesday, April 21, 2009

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?

Monday, April 20, 2009

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!

Thursday, April 16, 2009

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.

Tuesday, April 14, 2009

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!!

Sunday, April 12, 2009

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.

Friday, April 10, 2009

Look Out Houston!

Today is Good Friday. Nicole and the kids had the day off.

Last Sunday while I was at work, while I had some down time, I "Googled" the TV stations for Houston, Dallas, Austin, El Paso and Corpus Christi. I went to each station's website and picked out one reporter at each station. I emailed them and let it hang from there. I got off of work at 11 pm and by the time I made it home at 1 am, I already had a response from Kristine Galvan at the Houston Fox station and Terry Hoff from one of the Austin stations. After weeks and weeks of no response to email after email to the newspapers around the state, in one evening, not one, but two responses of sympathy and interest in Grey's story. All week I have been talking with Kristine in Houston about a time to drive down and meet with her.

I am sometimes amazed at the ways things work out. Kristine was very interested and wanted to get together for an interview. It just so happened that for the first time in years Nicole and the boys have the day of Good Friday off. They have never had the day off. Perfection! Can you say, one day road trip? I was really worried about how we were going to get time for the interview. Nicole HAD to be there! She has had to take so much time out off from work over the past few months, and BAM! She has the day off? Thank you Grey!

Kristine had a new twist on things. She called me on Wednesday and asked me if we could bring the brothers with us. At that point, I had still hadn't approached Nicole about going much less even considered taking the boys. I really had to think about that.

When Nicole got home, I sat her down and we discussed my conversation with Kristine. I really have to give Nicole credit, the last thing that sounded good to do on her day off was drive to Houston. But she got it. She understood the possibilities in what Kristine could accomplish for our House and Senate bills. We agreed that a road trip was in order. Then I mentioned Kristine's interest in meeting the boys and doing some taping with them. I mentioned that I wasn't sure that the boys were ready for that. After all, Seth is still running from the room when Nicole or I watch any of the videos or listen to the music from Grey's memorial. Nicole's solution to this question was poetic and simple. Just ask the boys. See what they wanted to do.

It is only going to be 4 months on Sunday the 12 th of April. That doesn't seem possible. It feels like a lifetime ago since I held Grey to my heart. The response of the boys was what I was expecting. Luke and Seth in no way thought that doing an interview was at all something that they were ready to do. Luke, 13, has been very quiet about his grief and not at all comfortable with public displays at all. Seth immediately refused. "I can't! I'm not ready!" And Riley, he wasn't about to do anything that his brothers would not do. So that was that.

Problem solved.

So the boys stayed with Nana and we made the trip today. We left the house at 8 am and got to Houston by 11 am. The drive went great. I have been looking for any excuse to drive Nicole's new truck. Kristine was so professional, Matt the cameraman too. The possibilities are amazing. Being a major Fox affiliate, Kristine's work will go out to all the other Fox stations and they will have an opportunity to pick up the story. That is HUGE! I have been beating my head against a wall for weeks trying to get Grey's story outside the Austin, San Antonio corridor. A must in my opinion to get one of our Bill's passed. Now with just this interview, we might be able to push that wall over.

So here's to Kristine and Matt the cameraman! Thanks to you both! All I have to give is the heartfelt thanks of a Father grasping to make sense of the death of his darling boy. The two of you have had an important role to play in Grey's story and you will always be in our hearts for playing that role.

Wednesday, April 8, 2009

Cardinal's First Win!

Yesterday was the second game of the Little League season, Seth's team the Cardinals struggled the first game and lost. Not last night! They played the Astros and won 9 to 7. It was an action packed game. Seth was so proud! He scored his first run of the season.

Seth is an amazing boy. Strong as an ox, and as sensitive and empathic as I have ever seen in a boy. A rambunctious 9 year old, he is like the energizer bunny, he never stops from the second that his eyes open to the second that they close. He is every bit as emotional as his Dad and struggles to contain those emotions and keep them from the world. His face is the window to his soul just like his old man. He knows no enemies and is kind almost to his own detriment.

Seth has been having a bit of an issue with batting this season. Last season, the first game, he was hit by the pitcher. He got beaned right on the left elbow. That pitcher could throw hard, I heard the ball hit all the way up in the scoring box. Right on the bone. Ever since then, Seth has been having trouble with backing out of the batters box when the kids are pitching. He has been working so hard to overcome this, but instincts are hard to overcome. I finally broke down and bought him an elbow guard, hoping that it will help him regain his confidence.

In last night's game, he was doing much better, but pop, he got hit in the shin by the pitcher 3 pitches in. He handled it like a champ! He was brilliant while he was running the bases. He stole second and third and scored his first run! He was so proud!! He couldn't contain himself when I got down from the scorers box. "Did you see, Dad? Did you? I took one for the team! I scored Dad! I scored!." His excitement and pride were so inspiring. I was overwhelmed by how much my approval mattered. For a split second I was 8 or 9 years old looking for my Dad's approval. And how important that approval was.

It is very humbling to be so important to someone. And so rewarding.

Seth! Great Job! Dad is so very proud of you!

Go Cardinals!!

Monday, April 6, 2009

Staying the Course

Passion is not something that I have to struggle to find when talking about expanding Texas new born screening laws. It just flows.

All I have to do is barely brush that dark, angry spot in my heart and the passion threatens to overwhelm me and drive me to miss steps in the path that Nicole and I have set ourselves upon. I worry about that quite a bit. I'm afraid of a moment of weakness and straying from the message into the tangled undergrowth that is my grief, my anguish over the loss of our son. My feeling of helplessness while watching Nicole and the boys navigate the storm wracked coarse that we are now trapped upon. The urge to turn off and try to get to calmer surrounding is overwhelming.

The message is what I am desperately grasping onto to right now. A need to get the word out about HB 1795 and SB 1720. The panic mounting as I start to realize the scale of what we are trying to accomplish. The feeling of "What can we hope to accomplish? We aren't famous, we have no special ability to attract attention." I found myself trying to reassure Nicole that these things progress in waves. That there will be lulls in the activity.

How ironic is it that I find myself experiencing the same feelings of exasperation and panic that nothing is happening and hasn't for several weeks?

Staying the course is so hard. The passion comes easy.

Sunday, April 5, 2009

My Dear Boy....

My Sweet Grey,

This is AH! DA! I know that I haven't talked directly to you before now My Little Man, but you are never far from Daddy's thoughts. The way you smelled, your smile, your laugh, they are all imprinted, a part of me. You know that. I know that you are watching over each of us and trying to help us with our grief, as much as you can. I am not asking you to help me son, but help your Mom. Hold her tight in the moments that she needs it. Help her to feel secure in the fact that you are always with us and playing hard in heaven with Zoe, Hunter, Dalton, and all the other sweet babies that have joined you to Fly High and Play Hard.

Help me to dull Mom's pain, carry it for her and guide her though the ruff spots as they come. Help her to continue to be strong.

Your Mom and I love and miss you Grey. So do your brothers.


Ah! Da!

Saturday, April 4, 2009

Baseball Fun Day

Today was the Little League fun day. A day of games, baseball pictures, bouncy activities, food, BBQ plates, and just plain fun. I have been the father of a Little League player for the past 5 years and this is the first time that I have taken a Saturday off to be a part of it. I have always been to busy running the rat race to take the time to be there for Nicole and the boys. Last year, Nicole took all 3 boys, Seth, Riley, and Grey to the fun day all by herself. She did wonderfully, as she always does, but it was hard. Grey was still very young and hadn't started displaying any symptoms. So she was all by herself with 2 ball players needing pictures and a 2 1/2 month old baby.

Nicole started a couple of weeks before Fun Day, dropping little hints that she might want for me to be there for it. "Oh, Fun Day is coming up."; "I don't know how I will be able to go to Fun Day this year, Grey was with us last time." ; "Your sister is having a birthday party for your nieces and nephew that day." Knowing full well that I had promised that I would not miss anymore of my Niece's and Nephew's birthday, so that was her ace in the hole.

For the first time, I decided that I would definitely not miss anymore of the important things, like Fun Days or birthdays, anything. I made myself that promise just after Grey's death, when I realized late one night that I had missed so much with Grey while I was away at work.

So I was there for the whole Fun Day celebration. It was really nice. The kids, Seth and Riley had a blast! They ran and jumped, played the games, etc. It was a happy, bitter-sweet, beautiful day. It was a whirl of pictures, lines, snacks and parents not seen for awhile. After it was all over, we were all worn out, tired, hot and sun burned.

A quick drive home and change of cloths and off to the birthday party for the cousins. More fun, games, jumping, food. I don't know how the boys were still on their feet. Not only that, but they were begging to go back to the cousins house and keep playing. More fun, games and craziness.

Finally, it is after 11 pm and we are back at the house. The boys are dead on their feet. 3 to 5 min later, they are out and snoring. A very successful day if I say son myself. And I am well on my way to beginning a new chapter in my life of grasping the moment for everything second of my life for every precious moment.

I'm doing it in honor of Grey and as a symbol of what I have learned, life is precious and to be lived for, not wasted by missing it by working all of the moments away.

Friday, April 3, 2009

Out of the Mouths of Babes.....

I have been wanting to blog about Wednesday for the past couple of days. I just never seemed to be able to get to it until now.

Wednesdays are practice for Seth's Little League team, the Cardinals. I look forward to Wednesday practices because it's usually just me, Seth and Riley. I like to give Nicole a evening that she can just relax, blog, think about Grey, anything that she needs to do for her. Anyway, Seth was busy with his team and I was watching Riley play with one of the little brothers of Seth's teammates. I get a kick out of how young kids Riley's age (6 or 7) think and interact. They were have a great old time. Talking, trying to climb the batting cage fence, etc. Just being kids.

It does my heart good to see Riley adjusting. You know, sometimes I worry about him. He has really been doing an amazing job. I have noticed that he has started to act younger, more like a 2 or 3 year old instead of 6. He was a great big brother. He loved the fact that he was Greyson's "Big Bro", but he has slipped back into the role of the baby of the family, very whiny, fussy, prone to throwing fits, crying, etc. Nicole and I feel that being patient with all of the boys right now is the best approach that we can take, letting them set the stage for how they are going to express their grief, what they are going to do to cope with Grey's death.

I was standing near Riley and the boy, listening to them talk and get acquainted. The boy was telling Riley that he had 2 big brothers and a little sister, that his brothers were his big brothers and that he was her big brother, that he liked coming to baseball practice with his brother, and that his sister was at home with his grandmother. That he got to go with his brother to practice because he was a good big brother to his sister. It was very cute! Riley was listening intently to the boy and nodding his head, "I have 2 big brothers, and I am my brother Grey's big brother too." I heard Riley say quietly. The boy stopped playing for a second and gazed at Riley. "Cool! Just like me! Where's your little brother?"

My heart skipped.

"He died. He's in heaven with Jesus."

Riley kept climbing the fence. The boy stood very still, I could tell that he was trying to grasp what Riley had just said. "Why is he in heaven?"

"He's dead. That's why." Riley said very matter of fact. He stopped climbing and looked at the boy.

"Why is he dead? The boy asked, "Did he get hurt?"

"Naw, he had a disease, he had Krabbes. And he died."

Riley and the boy went back to playing. For several minutes, they played quietly. My heart settled down. Riley gets it. He understands more than I thought. Not only that, but he has the ability to explain it to other kids. It was amazing. I was so proud of the fact that Riley has been able to process his feeling in an amazingly grown up way. I know that the acting younger at home to just a way to release tension and let Nicole and I handle the "heavy lifting" for a while.

Out of the Mouths of Babes, it is so unfair that my boy has to shoulder such a burden. I wish that I could spare him, his brothers, and Momma from the pain, the sadness, the longing to touch our Grey. I learned on Wednesday, that they all have amazing strength.

I am not alone.

Wednesday, April 1, 2009

My Sweet, Sweet Nicole

As luck goes in this world, I used up every bit that I had coming to me when I won Nicole. That might sound like I'm kissing up, (maybe a little) but it is true. Nicole is perfect for me, the sun to my moon. I never used to believe in soul mates but Nicole changed my mind on that one too. A whole new world has opened up to me since Nicole became a part of my life.

She is strong, funny, infuriating, sarcastic, loving, infuriating, sexy, infuriating, the best Mom in the world, a teacher, a rock, my life.

Her love for her children is amazing. Not that smothering kind of love, that strong, "your okay, shake it off, try again." kind of love. Our boys are so lucky. One day they are going to make wonderful husbands and fathers because of us. (Mostly Nicole)

God Bless her, Nicole misses Grey. As much as I hurt and despair over the loss of our boy, I don't think that a man can ever truly grasp what the loss of a child is like for a mother. And so soon after the start of that new life. My heart aches when I'm holding Nicole and she whispers, "I grew him wrong", Oh! Baby! I would do anything if I could make it easier for her. I just don't know how I can help. I will never stop trying.

The truly amazing thing is that Nicole is still being the caregiver, worrying about the boys, about me, instead of worrying about herself. I think anyone that has been reading my blog would know that I have been more than a little selfish and self- absorbed since Grey's death. Still Nicole does everything that she can think of to reassure me and the boys that we are going to be okay. That is just amazing to me. I don't.... I need to give Nicole that... I have come to realize as of late that focusing on me and even the boys, is not my most important job right now. The boys have both of us. Nicole only has me. Only I can completely understand how Nicole is feeling. She is my priority. She is my life.

She is my wife, and I love her, totally.