Friday, May 29, 2009

Lessons Learned....

This has been a very educational crash-coarse in Texas politics. I, along with many, many others found myself praying that HB 1795 would be read and voted on in the Senate before the deadline on Wednesday.

Thank You to everyone for your support and actions in trying to impress upon the Lt. Gov the importance of HB 1795.

Like all of you that breathed a big, long sigh of relief after it was voted out of the Senate, I thought that we had overcome a major obstacle. I have realized that the world of politics is filled with a mine field.

Unfortunately, I still can't tell you that we have been successful. I have begun to temper myself with caution before counting on success. Maybe I'm being overly cautious, but by my count, we have been told on 4 separate occasions that we have succeeded only to find another roadblock unseen around that next turn. I have faith in the rightness of what we are trying to do, but I need to be sure of what we really have done.

I will continue to pray as I ask you to do. With luck and help from Grey I hope to have good news soon.

Tuesday, May 26, 2009

You Would Think...

The way that this year started for our family you would think that we would be able to tolerate anything that comes our way.

You would think that nothing would be able to disturb me deep down in my soul, after hold Grey when he took his last breath.

I have to tell you, you would be wrong.

I feel like screaming like a girl.

I feel like crying and kicking and letting my nose run down my face like a small child throwing a tantrum. I feel like being sick. I'm starting to have trouble making sense of things.

Yesterday should have been a good, relaxing family day after all of the stress, worry and work that we as a family have put into helping Rep. Pierson and her Chief of Staff, Maureen make "Greyson's Law" a reality. We should have been able to bask in the knowledge that we have had such success and that things have gone so well.

Just as I have started to have a respect for the work done by our elected officials, I got a shock on yesterday morning. Maureen awakened me from sleeping late with a concerned phone call. She wanted Nicole and I to know that, after we thought Grey's bills were free and clear to proceed onto the Governor for signing and that things were just a matter of procedure, The Bill's are in real danger of not making it through the final stages in time before the close of the Legislative Secession.

The problem is not Greyson's Bill's or even a lack of support. It is the most petty and infuriating of problems... Petty, stupid partisan politics. The House Democrats don't like a Republican Voter Reform Bill and the Democrat leadership has decided to play games with proceedings to slow things to try and keep the Voter Reform Bill from coming up for a vote. The side effect of this is that any Bills that are in the way or after the controversial legislation are in real danger of dying because of not being addressed.

The Senate version of Greyson's Law (SB1720) is one of the endangered bills. It requires the House final approval before going to the Governor.

We still have the CSHB 1795 version from the House in the Senate that we expect to be passed by today, but Maureen informed us that Greyson's Law will pick up an amendment in the Senate as law makers try to save important legislation from certain death because of the situation in the House. It is expected that Greyson's Law will pick up HB 1886 (Screening Expectant Mother's for HIV & other sexually transmitted diseases so that medications can be administered to protect the baby after birth). Good Bill.

The problem is.... if we pick up an amendment, the Bill has to go back to the House for review and approval with the amendment. The House is paralyzed. There is a good chance that the review won't take place before the deadline for the end of the Legislative Secession.


Friday, May 22, 2009

Grey Speaks to Me, I Just Forget to Listen.

This Week has been kicking my BUTT!! Between field trips for the Boys, talent shows, keeping tabs on the legislation progress and little league, I feel like I could sleep for a week. Don't get me wrong, I have loved every minute of it, but WOW! I guess I'm getting old.

Thursday was the last game for Riley and his team, the Astros. All and all it has been a pretty good season. Riley truly loves baseball and gets into it. He had a great game.

Nicole had told me that our friends Mitzi and her husband Clint hoped to meet up with us to introduce us to Mitzi's parents and some friends that had been tracking the progress of Greyson's Law. They were having dinner at the local Mr. Gatti's Pizza and were hoping that we would join them after Riley's game. So we promised to head over as soon as the game finished.

Mitzi and Clint have the most darling little boy. He was born shortly after Greyson was and is just a joy. I have mentioned him in my past blogs. His name is Cash.

I can't explain it. I am just drawn to Cash. Sometimes I worry about offending his parents by the intensity of my emotional connection to him. My bruised and empty heart feels nearly real when I get to see him. Oh, there is the stinging pain of absence but sometimes I can almost feel Grey's presence when I interact with little Cash.

I have found myself very envious of Nicole's ability to see Grey's presence in the little things. A butterfly drawing blowing on the breeze, a song, a pesty bird. I don't have her sensitivity to such things. I have only had one real dream about Grey and of late have been feeling lost and cut off from him by my lack of dreams or sweet flashes of memories not quite forgotten. Just as I had been starting to despair about my lack of connection to Grey,....

He reached out to me though Sweet Little Cash.

When we arrived and made our greetings, I knelt next to Cash and was blessed by a big smile. Just when I thought that Cash was done with me. I turned to respond to his Grandmother's question, and Cash reached back behind him to grab my hand and pulled me back to him. He grabbed my wrist in both of his little hands and then touched my face with his sticky, sweet chocolate covered hands in just the way Grey did before he became symptomatic.

My Grey.

Thank you Cash, thank you for reminding me of this almost forgotten moment so long, yet so short a time ago. Cash, with your piercing blue eyes, I feel that you can see right though me into my soul and that somehow; maybe I'm fooling myself here; connect me to my Sweet Boy.

Cash and his parents will always have a special place in my heart.

Mitzi and Clint, thank you for your sweet, concern and worry about me and Nicole. Thank you from the bottom of my heart for being willing to share your little Cash with us.

Wednesday, May 20, 2009

A Million Firsts That Will Never Be

Today was a big day.

Seth and Riley are very much the extroverts. They have no fear! It was fantastic!

Both of them have been very excited the past couple of weeks, telling Nicole and I all about what they were going to do in their school talent shows.

I was amazed. I never had the guts and confidence to even consider being in a talent show when I was their age. I had no talent. Talent was something other people had. Not me. But both of them are just, yea I got talent, I can do this.

So, Riley was going to sing "Eye Of The Tiger" for everyone and Seth and some of his friends were going to do a scooter demonstration.

THEY WERE AMAZING!! I wanted to link the video, but our cable for the camera is missing.

I also ate lunch with Riley and 2 of his friends after their talent show. One of Riley's friends just kept going on and on about how great Riley did in the show. I was so proud for Riley. That's another way I know that Nicole and I have been doing well with our boys, they like everyone and everyone likes them.

While I was watching Seth's portion of the show, which was later in the day, I was sitting next to the cutest little boy. He was 16 months old. One month younger that Grey would be right now. He was playing with me, hiding in his mother's arms and peeking out at me. His smile was so sweet. He was at that awkward, just walking stage, still prone to falling.

I couldn't help it. The squeezing numbness gripped my heart. I could feel Greyson in my arms. Still, the grief wasn't so great that the tears came. In my mind eye I could see Grey sitting in heaven, laughing and clapping his hands for his big brother. This image was fleeting.

My thoughts quickly turned to all of the things that we will never see Grey do for the first time.

Millions of firsts. Gone.

We never got to experience Grey sitting for the first time, standing, walking, running, jumping, giving his first hug, falling for the first time, camping, riding a bike, playing with our dogs, My head is spinning.

Spinning! So many. Too many.

No first day of school.


Just memories. And unrealized dreams for Grey.

Yep. My heart and I are still broken.

I miss you more each day Greyson.

I love you always.

Tuesday, May 19, 2009

The Muck Just Keeps Going On and On...

Sometimes I just feel overwhelmed. Like I am trying to wade through sticky goo and I'm getting more and more stuck the more I try to move. I have been lost in this goo since the moment that my Sweet Grey took his last breath. Since that moment, I think, there has been this overwhelming urge to make sure that no one forgets Grey. That everyone know his story and learn from it.

Progress in this murky, dark, area is almost non-existent. While our progress in the area of Texas and getting the legislation going has been more successful than I could ave ever dreamed, nothing has happened in the area of getting Grey's story out to the bulk of the nation.

Nicole has stated that she feels that we were chosen to be Grey's parents because we would carry the fight after Grey had done his part. The Doctor's tell us that we are 1 in 4 million. Meaning that only 1 in 4 million families have not 1 but 2 recessive diseases in their make-up. I feel that this alone means that Grey's death had a purpose.

Every week since Grey died I have been writing to may of the national TV shows; Oprah, Bonnie Hunt, Ellen, etc., etc. I think that Grey is the perfect example to hold up to all who want to protect children.


Monday morning after Nicole went in to work, she called me crying. Kayla Rose de Visser, a beautiful little girl the same age that Grey was, died.
DAMN Krabbes!!

Babies are still dying.

My heart is broken. Little Kayla makes me realize just how broken. I was instantly transported back to the moment that felt Grey take his last breath. My soul screamed out in pain for her poor family. MUCK!
The muck is winning. It has been winning for a long time. I can't let it win any longer! Grey, Judson, Hunter, Kayla, Dalton, too many innocent lives lost. Just to Krabbes! How many other children with other detectable diseases are missed and allowed to suffer?

Someone with a national standing needs to grab hold of this issue and help Nicole and I get the word out about this tragedy and tell Greyson's story!

Until it does, I will keep fighting through the muck! Anyone who knows me, knows I will never quit.

Grey fought his part of the fight bravely until the very end. How can I do less?

Saturday, May 16, 2009

Grey's Magic

As a grieving father, I am accustomed to find Grey foremost in my thoughts at all times. Even in the times that Grey isn't foremost, he is not far and easily returns. I have not been prepared for the number of people that have also had my darling son on their minds.

Grey has been the topic of discussion in the House and Senate floors of the Great State of Texas, the law that will bear is name forever is progressing steadily toward realization. I expect this, and for him to be in the thoughts of family and friends.

Last night I got a shock.

Dear friends, Michele Bjorkman and Jackie Waggner with Huntershope. org have been telling me that they have been getting Google Alerts on a regular basis that have originated from Greyson's Story. Until last night, Nicole and I have only their word to go on. But Michele sent us a link to the latest report that they received.

I was stunned. Not only had there been countless searches run, but we found the TV news story that was run in Austin on websites in Florida, Indiana and West Virginia. This was the story that was done when the whole family was at the Capital for the testimony at our House Committee hearing before the Public Health Committee. We found numerous links to new paper articles and other peoples blog sites....

Magic. Pure magic. I don't know what to say. But that was Grey. He drew people to him. People loved him instantly.

Grey was pure love. He will always continue to be in my heart as love as I live.

Grey, Grey, I am so proud of you. Proud to be your Dad.

I Love you forever my son.

Thursday, May 14, 2009

5 Months.... Really?

May 12, 2009 marked the 5 th month since we last held our Greyson. 5 months later and my heart is just as broken and still missing a huge part of the whole.

5 Months.

I used to sweat the 2 days that I had to be away from Grey when I worked the weekends. I haven't held him in 5 months.

5 Months ago, a huge part of me died in my arms.

After 5 Months, a few things have changed. Seeing a infant the same age as Grey when he died doesn't bring instant tears anymore, though seeing a baby the age that Grey would be makes my chest go numb.
I don't wake as often at night swearing that I heard Grey crying in his bed.

Most of all, I know that Luke, Seth and Riley are going to be okay. Youth heals all wounds, or makes them bearable.

I have struggled with explaining to close friends and family that my pain gets no better. The only reason that I hurt less is that I have started the numbness of shock, and disbelief. Some have asked me if I think that I will ever be back to my old self. I can say with all certainty that I will never be who I was before Grey' death.

I Love You Grey, Grey!

We all miss you so much.

Ah DA!

Monday, May 11, 2009

Life and It's Firsts

To all you wonderful Mother's out there, I would like to say, a heartfelt - late - but still a heartfelt Happy Mother's Day.

I spent a great amount of time thinking lately about life. I guess that it is something that, as the Father of a child that has died, comes as an unwanted and uncontrollable reflex. I almost never spend anytime thinking about life or it's fragility before, that's for sure. Now I find myself lost in deep thoughts constantly, involuntarily. I keep looking for some form of control that I can magically exercise. I so love to be in control.

Yesterday was a hard day.

I hate to see my loved ones in pain, especially when I can't do anything to help.
Life is all about FIRSTS.

First smile; first step; first bath, first birthday; first day of school.

Life continues to be about firsts after the death of a child,.... First morning without Grey; first day; first holiday.... on and on and on.

Yesterday was a tough first.

Nicole's first Mother's Day after Grey.

Unless you as we have lost one of your children, you can't understand.

I love Nicole completely. I'm still learning that just because you love someone, doesn't mean that you can protect them.

As hard as it was for me yesterday watching Nicole struggle with all of the emotions that she is having, I get it.

Mother's and Father's Days are about celebrating the fact that God gives us the beautiful force of good and love, our Mother's and Father's.

But for Nicole and I, these days are like a stinging insect and having absolutely no way of killing or shooing it away. As much as I get what Nicole is feeling, I am powerless to do anything but hold her and listen.

Helpless. That's how it feels.

This to is a first for Nicole and I.

Saturday, May 9, 2009

Cardinals are 4-2-2!!

Seth and his team have been doing awesomely! Even though the Little League games were suspended for a week, Seth and his teammates have come out swinging! They won their game last night and again this morning! Nicole reported to me that Seth got hits both of his times at bat! They came away with the win 7 to 3. Seth is very excited. His first hit was a grounder and he was thrown out at first base. His second was a pop - fly and he made it on base, stole second and then third! Unfortunately, the other team then got their 3 rd out before he could score.

Seth is the team player all the way though, he shrugged it off and was focused for the final inning. Way to GO! YEA SETH!

Dad is so proud of you big man!

Go Cardinals!

Saturday, May 2, 2009

Greyson's Law is Almost!

Yesterday we finally got the call that we have been waiting for! HB 1795 was passed overwhelmingly out of the Public Health Committee in the House! Now it is on to the general calendar for a vote on the floor and then to the Governor's desk!

It's happening Grey!

There are so many of you that I need to thank for your support and prayers. I will try to do so in the very near future. Until then, thank you all!

Time to Start Breathing again?

We have been pushing for so long on "Greyson's Law" that I can hardly fathom the fact that it is happening. People that I respect and know these things tell me that the fact that we have accomplished what we have accomplished is unusual. I will have to take their word for it, because it seemed to be a up-hill battle from the beginning.

But it has only been 4 months and 3 weeks since we lost Greyson. It really seems that it has been a lifetime.

My dear friend Ron tells me constantly that we should be proud of ourselves for all that we have accomplished in such a short time. I find myself chafing under the knowledge that it will be a year before the new tests are enacted and that Krabbes Disease will not be one of the added diseases screened for. I have to force myself to be happy and to celebrate the victory. It may be a victory, but it is an incomplete one. Thousands of Infants in this country will not be tested for many diseases that they should be screened for at birth. Thousands and thousands will be permanently injured and many others will die because of the fact that the newborn screening programs in many states are so incomplete.

The anger in my soul threatens to consume me because of this, this ignorance! And that is what it is. No parent if they knew what I know would be okay with the state of affairs in this country and that number of infants misdiagnosed because of the lack of newborn screening.

This is a health crises of ignorance and the need for education and study is critical.
But for the moment, I will stop, and take a breath again....We did it Grey! Because of you we made things better for babies in Texas!