heydad's-blog

What I Have Been Doing?

2011-05-24T06:34:00.000-07:00

Oh! I forgot to tell y'all what else I have been up to.

When I last blogged in December, I told you that I had been appointed to the Texas Newborn Screening Advisory Committee. I was very honored to elected to be the first ever Chairman of the Committee, for a 2 year term. I am working hard to make sure that the committee is successful and has a positive impact on the newborn screening program in Texas. Unfortunately, the committee and Cystic Fibrosis testing are the only parts of "Greyson Law" that have begun, and CF testing would have happened anyway.

With the start of the current legislative secession, I have found myself pulled back into the efforts of protecting the Texas Newborn Screening Program from attacks from special interest groups. I will be honest, I was hesitant to get involved again. The establishment of "Greyson's Law" was very emotionally taxing on our family, and I wasn't sure that I wanted to open us up to that again.

I couldn't ignore the danger.

The anti-government swing that has been building in the country is alive and strong in Texas. I worry that one of the casualties of this trend will be the newborn screening program. Most of the state, and yes, the nation, don't have newborn screening on their radar. They don't know about it and never give it a second thought. Unfortunately, the very nature of the program is it's biggest flaw. Protecting babies from rare, recessive disorders doen't get the attention that premature births get. I am amazed that most of the parents in the Lamaze classes that I have taught, have no idea of what newborn screening even is.

Seth is a glowing example of of how the program works at it's best. The Infants that test normal in their newborn screens, their parents never even realize that they have been tested and therefore protected from the effects of rare inheritable, preventable disorders. Many times, only those parents that do get a call from the state that their child has had an abnormal level in the screen even realize that the screening has happened. This is weakness that the civil rights group that sued the program are exploiting. The fact that most people don't know what the screening is and what it is for. They claim that the screening program and the research that is done on the bloodspots to develop new tests and treatments is government invading Texas citizens privacy. They are taking this weakness and exploiting it to paint the most conspiratory picture about the program to goad people into a position against the program and its good works. It is very telling that none of the "parents" that are the "plaintiffs" in the past and current lawsuits have children that are in anyway affected by any inheritable disorders.

No parent that understands the good done by the screening would ever be a part of these attacks.

Which exposes the other weakness of the program, the parents that do have children that have been saved by the program are often like Nicole and I after Seth was identified, relieved and overwhelmed in grasping how they have had a child affected by a recessive disorder. They are often so preoccupied in learning how to manage their child's special treatments, diet, or lifestyle modifications that they have little or no time to even realize that newborn screening in Texas is under attack or that it still needs so much work to even be as good as the rest of the country.

There are children in Texas that are still being injured or dying from preventable disorders!

I hope in future blogs to help educate you and in turn you can help educate others about the importance of newborn screening. I have been spending much of my days-off up in Austin during this Legislative secession, doing my best to defeat bills that are dangerous to the program and help protect the way that newborn screening is done in Texas.

I will be posting new blogs as we go and updating you on this fight. I will also update you about developments with the Grey's Gift Foundation. so stay tuned.

Time to Start Again....

2011-05-22T08:57:00.000-07:00

It has been a while.

It amazes me how time just keeps marching on.

Grey has been gone for 2 years, 5 months, 1 week and 3 days.

I will admit, that I have spent a lot of time despairing over the fact that we should have a 3 year-old running around, underfoot, into everything. Still, that time is less than last year. But I think about Grey everyday. Nicole and I are trying to honor his memory in several ways.

In fact, Nicole is the reason that I am going to start blogging again. I stopped because I just really felt that I was stuck, and that blogging was part of what was keeping me from refocusing my energies.

I have succeeded in doing that. Together, Nicole, the boys and I have started a new chapter in our lives, and Grey is still with us. Seth and Riley just finished their Little League season. Seth was on the Padres in the Minors and I must say, he has really started to get it. He was amazing! He really improved this season. He played catcher, 2nd base and out-field and did a really great job at every position. In one of his games he hit 2 singles and a double! He even got a in-field Home-run that drove in two other runners and tied the game. Then he was playing catcher in the last inning of that same game and got the last out at the home plate in a double-play. Defiantly his best season yet!

Riley was on the Pee Wee Tigers this season and I was the Head coach. We had great fun! Riley plays a great 2nd base and even played some catcher. He got more hits than any other boy on his team this season. I really didn't know what to expect, and I was very nervous. I have coached the younger kids, but this was the first season that we were in a competitive league, we were keeping score. My boys went on a 4 game winning streak and lead our division for the first 3 weeks of the season. We finished in 5 th place with 5 wins, 1 tie and 3 losses. I was very proud. And more importantly, the kids had fun.

Luke is growing up very quickly. He just turned 16 and has really taken to the Air Force Junior ROTC program at Canyon High School. I must say that if he manages to live, he is becoming a fine young man.

And what, you may ask, have I been doing besides coaching Little League and working? With Nicole's help and support, I have been developing a plan to help save babies in Greyson's memory. First, we started teaching a few classes at the McKenna group in New Braunfels to parents of young children. They aren't truly the exact fit that I was planning, but they need to hear of a story like Grey's, to realize that they have a responsibility to be advocates for their children and how precious their children's' health is. What started as a few minutes at the beginning of a class, has become a whole class to ourselves to tell our story and share Greyson with others. With the success that we had, I felt that we should expand and started targeting first-time parents, having their first baby. I have been teaching a monthly class at the New Braunfels Christus Santa Rose Hospital as part of the "Caring for Mom/Caring for Baby" portion of their Lamaze program. With the wonderful pamphlet that Nicole has designed and the Website that she built, we are reaching people who have the greatest need of knowing about the newborn screening program and more importantly where to go for expanded screening to protect their newborns.

Nicole and I soon realized, because the feedback from the classes and the lack of newborn screening education for parents, that we could and should do more. After much thought and discussion, we have decided to found the Grey's Gift Memorial Foundation.

Using Seth and Greyson's story, we will provide the education to parents, so that they can learn from our experiences.

I'm Afraid to Jinx It.....

2009-12-20T18:20:00.001-08:00

I have been stressing about the status of Greyson's Law.

A couple of months ago, I started lining up my letters of nomination for the Advisory Council that is to be created in accordance with Greyson's Law. After confirming the delivery of all of them, I was shocked to find out that as of Mid- August, no progress had been made of the formation of the Council or the implementation of the additional testing, except for the Cystic Fibrosis testing.

I was confused. And Angry!

I started making calls and trying to find out what was going on. My first call was the to the office responsible for handing out the monies to the departments responsible for enacting the legislation. Which in Greyson's Law's case would be the Texas Dept. of Health and Human Services (DSHS). I was stunned when I was told that the budget Rider that was meant for Greyson's Law was combined with the monies for 2 other new programs to be enacted by the DSHS, and that one of these projects had large budget overruns that were "unexpected" and had used all of the money allocated. All of IT! Not just it's portion! The portion for Greyson's Law too!

What's that saying? "Give a dog a bone?" Well, I started making calls. All of the contacts that we made during the work to get Greyson's Law passed. Scheduling meetings, agreeing to be patient and not attend meetings because of other sensitive matters to be discussed at the same time, worrying that nothing was being done, that Greyson's Law was destined to become what the Cystic Fibrosis was, an unfunded mandate....

I haven't heard much of anything for a couple of months, other than a few worrying facts from some sources. But then, two weeks ago, I heard that the Advisory Council was getting ready to be formed. I immediately called the DSHS and asked what I could do to help. I was told that they still had my letters of nomination and that the hopes were to get the Council up and working so that ways to find funding internally might be possible.

YEA! Baby steps are good too....

I worry about jinxing it, but this week I got an Nomination Information request form from the

DSHS via email!

Here's Hoping!

Greyson Was Born 2 Years Ago Today!

2009-12-18T21:38:00.000-08:00

We as a family have passed two major milestones since I last Blogged; Greyson's First Angel Day and his second birthday. I don't know what it is, but I just haven't been compelled to Blog here lately. I don't know what it is, but I am having trouble getting in touch with my feelings lately. All of the emotions are still there and as strong as ever. In some ways, I guess I have started to come to terms with the fact that our Little Boy is in Heaven.

Believe me, I am not happy about it, but I have to accept it. Not for my sake, but for the sake of all of those that I love.
Nicole hit the nail on the head last year when she blogged about: "I wonder what kind of Birthday you have in Heaven?"
It is much easier on Greyson than it is us. I truly believe that our loved one's in Heaven are able to see us and be with us anytime that they want. I what to believe that he is always with us, but it is so hard to not be able to see or touch him.

The Love that our friends have for Greyson just absolutely dumbfounds me. I mean, I get that people were and are drawn to Greyson, but it is just humbling to me that so many have been affected by our sweet boy! Their love and support has been amazing! I feel lucky and blessed to be surrounded by so many wonderful people that love me and my family.

HAPPY SECOND BIRTHDAY GREYSON!!!

We love and miss you, and are sooo! proud of you.

Last Year We Lived It... Now We Are Feeling It...

2009-12-05T18:18:00.000-08:00

Broken and lost, raw and bare.

Simple words. The meaning of these words to my family right now are anything but.

This time last year we had to endure and master the unendureable, the unmasterable. A nightmare come to life, pain personified.

Endure we did, together, but forever changed.

I for one am still learning just how much.

December the 3rd was my 41st birthday. It is a day that I have been dreading. One year ago, we had our last family get together at my sister Adrienne's house and celebrated my birthday. Grey was his shining self. Despite the terrible disease that was ravaging his tiny body, he was bright and beautiful, smiling and sweet. I miss his loving looks and eyes, but I am proud that he too saw that love in our eyes for him.

I think I am most proud of that. The fact that he never knew what was coming. All he knew was that he was loved so much. His spirit was beautiful and it poured out of his smile and his eyes in abundance.

When the long dreaded day of my birthday arrived, first, after ushering Nicole and the boys off to school, I allowed myself to wallow in my pain. After the tears stopped, I was amazed and relieved to realize that my pride and thankfulness that I got to be Greyson's Daddy has now overtaken the strength of my grief. I am still broken, still sad, but better for it.

I think that I did learn about true and complete love. I learned it from Grey. I am finally able to thank God again for giving me Greyson. I haven't been able to for a very long time.

Daddy Loves You Greyson! Always and Forever.

To all of you that know and are dear to us, I thank you for your understanding and love. Please know the Nicole, the boys, and I will make okay because of your help. This is not to say that this journey is over. It is hard to describe, but we are reliving each day of last year again this year. I thought that it was only me, but Nicole has confided to me that she too is having this experience. Each day is full of "at this exact time last year..." Some of you are also experiencing some of this too.

Please know that your friendship honors us. We are better for it. I am better for it.

And from me to a certain friend, your respect humbles me and I hope to continue to deserve it, to earn it as you have earned and deserve my respect and admiration. Thank you for your kind words, they have given me strength.

A Friday Night Out!

2009-11-15T17:02:00.000-08:00

If I had to sum up how I have been these past few weeks....

I'm broken.

And I'm pissed about it.

I really thought that I was doing at least a decent job of functioning despite these feeling, you know, holding it together for the good of the family and all. Well, I have been fooling no one but myself. What's more, I have been getting pissy with Nicole when she calls me on it. Defensive, loud, belligerent and just ugly. Believe me. I wish that I wasn't having to own up to this fact. In fact as of Friday night, I was still getting upset with Nicole because of what I saw as her lack of understanding and acceptance of my grief and the processing of my grief.

I mean. how DARE she expect me to act as an adult though this, SHE of all people knows that I am lost without Greyson.

Yup!

Another great moment in the history of Bill Morris, wonderful husband and father! How selfless I am! How Noble!

Thinking about my behavior over the past couple of weeks makes me ill. I was totally sure that I was in the right and that Nicole was just being intolerant of my grief.

Friday night was a rarity. Nicole and I went out, just the two of us. What with the changes to my work schedule and my inability to get out of my own way, we haven't been connecting emotionally real well. About a month ago I had made a half-assed attempt to smooth things over by surprising Nicole with a band for her wedding set that I got for her on our 10 year anniversary. Well. The band didn't match and it didn't work. Nicole thanked me and asked me to return the ring so that we could get our money back.

I pouted, and didn't return the ring in time to get anything but a store credit back. Nicole asked me Friday morning to go with her to the store so that she could pick out a keepsake necklace for our trip to Buffalo next week. So after I finished work, off we went to San Antonio to the store and dinner.

While we drove, Nicole bravely again, tried to talk to me about how I have been acting. I was having none of it. Defensive to say the least! I could tell that she was getting exasperated with me when we still hadn't made any progress by the time that we arrived at the store.

While we were inside, I again saw how patient and understanding Nicole is. She insisted that I use the store credit to replace my old wedding band that I have had since our wedding day. She cited that it, being yellow gold didn't match her new Platinum ring in any way and that I therefore needed to have a new ring that would closer match hers. All of the emotional wrestling and sparing that we had done in the car, and she was spoiling me?! Shocked into meekness, I was quiet when we got back into the truck. Tears in her eyes, Nicole told me:

"Sweet, remember how hard Grey used to work to get your attention and give you attention? Even after he was really sick?

I do.

"You know, I believe that Greyson is still with us and trying to show us how much he loves us and misses us. But he can't get though your anger and your intense sadness. I don't believe that you can hear him or feel him when you are so sad and angry, Bill."

"Remember how happy you could make him just by talking to him or answering him? Have you thought about how upset he must be that he can't get you to hear him?"

I felt as if I had been kicked in the stomach.

Have I been unable to dream about him or see his attempts to reach me because of my dwelling on my pain?

I haven't had a dream about him or with him in months. Nicole is always seeing little signs that he has sent her. But none for me. Is this because of me too?

Today I was driving right past the store while I was working. On a whim, I asked my client if we could stop to check if my new band was ready. It was.

As soon as I saw it and the simple, plain beauty of the ring, all of the thoughts and doubts that have been rattling in my brain quieted. I want to start anew. I want Grey to know that I love him and even though I miss him,

I will try to be okay. For him.

For Nicole.

For Luke.

For Seth.

For Riley.

For me.

Forgive me.

Yesterday Was A Really Bad Day!

2009-10-27T00:37:00.000-07:00

I have worked the weekends every weekend for the past 11 years. It was a change that we made to my schedule after we discovered that Seth had PKU (Phenyketonuria) from his newborn screening. We decided that the chances of his diet restrictions being ignored by caregivers at a daycare were too great of a risk to take. So I kept the babies home with me during the week until they went to kindergarten. I had always wanted to keep them out of daycare anyways and Nicole being a teacher and off when the kids are, it was just the best for me as a nurse to work the weekends. Besides, there is never a shortage of weekend shifts. So that has been our routine. Me off during the week and Nicole off on the weekends with the kids. Thank God for Nanna (Nicole's Mom), over the years, knowing that she is there to help Nicole has made it all work.

Well, since Grey's death, I have been alone during the weekdays. This has been a good and bad thing. It has gotten to the point that I have too much time to myself. Not to mention that Nicole is feeling it with 3 older boys all weekend alone. So it has come time for a change.

Sunday, October the 25th was the first Sunday off for me on my new schedule. I am now off on all the Sundays and working 2 additional shifts during the week. We had lots of ideas for the first Sunday and it all got messed up. Luke has been asking me to take him to the Home Depot to get the materials that he needs for his science project, so this had to get done. My van's battery died on Saturday and I needed to get a new one, so Luke and I went to Walmart first, while we were waiting for the van, I saw a Dad and his little boy walking through the Walmart. He was exactly the same age as Grey would be, and his was having a time riding his Daddy's shoulders. He had gotten a toy sword and was very proud to show me as they passed me. My greeting to this little boy was rewarded by a wonderful smile, which shook my heart and soul.

The pain.

The sadness.

I finished the day, and went to work for the night shift. As I drove home in the downpour of a fall thunderstorm, the black mood that had been creeping at the edges of my consciousness took hold. I got home desperate to find some sign of my Baby Boy, my Greyson, some sign that he was real, not a dream. something that he had touched, I went to his room and pressed my face to his bed breathing deeply, trying to catch some wisp of his scent, dust.

I panicked, I grabbed his Halloween Costume, the darling Giraffe, which I knew we had never washed, DUST!

Tears stinging my eyes, I stood in the middle of his room, trying not to lose it. His room didn't have the scent of sweet baby smell anymore, just the staleness of a unused room. I collapsed to sit in the middle of the room, and just blubbered like a baby. It has been over 10 months since he left us and the pain is just as new, just as raw, just as strong as ever. So much for the healing of time.

After sitting there for I don't know how long, I pulled myself out of his room and decided to blog about my feelings to keep myself busy until I had to leave to pick Seth up for his checkup at the Pediatricians. Those that know me may or may not know that one of the very problematic symptoms of my grieving process has been that I have been having sleep issues. At times I lie awake unable to shut off my mind, the last week of my son's life replaying endlessly in my mind.

Or more annoying, I fall asleep without even realizing it and sleep as if I, myself am dead. Nothing wakes me. NOT an alarm, not the phone, nothing short of shaking me awake works. I have been as much as a 2 hours late to work a couple of times.

Seth's appointment was for 9:30 am and I was going to pick him up and then drop him back at school after. I fell asleep typing on my blog, sitting up on the couch. Seth, sure that I had a car wreck, called Nicole at her school and she called me. 15 times. I woke up at 11:20 am, a crick in my neck and having missed the appointment totally.

My grief counselor has assured me that my issues with sleep are just a symptom of my grief. That in time it will pass. That when my mind can't handle it anymore, it shuts down.

So much for not curling into a ball and not moving. So much for being strong. I just keep letting people down.

Memories of My Grey....

2009-10-23T05:48:00.000-07:00

I have found myself running through all of my memories of our brief time with our sweet boy. Most of the time, these moments happen to me on the way home in the morning after working a night shift. I guess that this is a improvement, because it wasn't that long ago that being alone on the night shift was just torture. Being alone with myself, I would be racked by the grief and regrets of dreams lost. At this particular point, I am travelling the memory circuit, transported back in time to the memories of the worst period of my life, the illness and death of my baby boy.

Not all of the memories are terrible, some are actually quite pleasant. All of them are laced with sadness.

The past couple of mornings, I have been replaying in my head, one particular memory. It was after we knew that Grey was terminal and his small body was rebelling against him. He was paralyzed and unable to move, when we held him it was like holding a newborn, we had to support his head and he would just melt in your arms, as if he were still a newborn. Nicole and I had my parents over to the house for dinner. We were trying to make sure that everyone spent some time with Greyson. We were still grasping at straws that Greyson might not be dying, that he would be paralyzed, but he would live. Anyway, I was sitting on the same couch that Grey and I always napped on. My Mom was sitting next to me on my left side and my Dad was sitting across the room on the opposite couch with Nicole. The boys were playing together on the XBox and I was holding Greyson on my chest with his face snuggled against me. Grey had lost all control of his head and as a result he always laid his head on my chest or shoulder. He was facing my Mom and she was talking to him. He was smiling and just taking it all in with his big, beautiful eyes. All of a sudden, he made a little cooing sound, which at this point, took a lot of effort and started to scratch at my shoulder, opening and closing his little hand. Just this simple little move took enormous effort for him to do at this point, and I was trying to figure out what Grey wanted. My Mom looked at Grey and asked "Is that your Daddy? Does your Daddy got you?" Greyson sighed a big sigh and scratched at my shoulder again smiling a grand smile. "Yes, Sweetheart, you love your Daddy don't you?" more smiles and sighing. Greyson snuggled against me even closer, as much as he could manage. My eyes were stung by tears, my heart pounding. My boy was making sure that he told his Nonnie how much he loved me.

Loved me....

I can count myself in a very exclusive club. I have experience the truest and purest form of love. The unchanged true and unconditional love of a parent for a seriously ill child. The complete acceptance of someone and the complete devotion of that child to me.

Definitely one of the special "Gifts" that Greyson has given to me.

I miss him.

I Don't Have The Answers....

2009-10-17T15:36:00.000-07:00

The other day, a father that I have been corresponding with sent me the following message:

"How do you make it through the day? It is so hard, I just can't get through some days."

My heart aching, I can totally sympathize with him. His loss is fresher that mine, his little boy only gone a few months, but I recognize and feel the pain that he is talking about. The pain makes you crazy and sure that if you take one more breath, your chest will surely burst. And instead of finding your heart, only a huge, gaping wound staring back from your empty chest. The sadness and pain can be crippling, paralyzing. I consumes very thought and breath totally. Tasks temporarily deaden and distract you from the pain, but it is constantly your companion and quickly returns.

This Father's plea for hope tore at me. I so wanted to be able to tell him that everything will be alright, that he will make it. The truth is, I can't. There are days still that I just don't know how I will manage to carry on. On the 12 th of this October, it was 10 months since our Grey died. I had a very rough time. I tried to blog, and wound up deleting it after trying to express my feeling for a couple of hours. Sometimes I just can't put into words what I am feeling. I just hurt too much.

I miss him too much.

I want to hold him too much.

In the end, all I could do was send this father a few empty words about trying to concentrate on supporting his wife, remembering the good memories and making time to fall apart.

Sounds pretty empty to me too.

How I wish I had the answers, for me as well as him.

Just Broken.

2009-10-06T21:39:00.000-07:00

How are you and the family doing?

It's a pretty common question. All of us ask it when we run into friends that we haven't seen of heard from for a while. It is almost a reflex.

Normal.

The thing is, for me, nothing is normal, and I really am beginning to doubt that things will ever be normal again. My counselor tells me that I am stuck, broken and stuck, and that I will remain so until I get sick and tired of being sick and tired. If it didn't hurt so much it would almost sound like one of those jokes like "Who's on first?" She says that I need to be patient with myself and that I will continue to proceed though my grief in a manner that is right for me. Until then, she says to fake it. For the sake of family and close friends, fake it.

Fake that I am able to function?

Fake that I am not ready to scream all of the time?

Fake that work is just tedious at best?

Fake that I am happy?

No.

I really think that she means that I need to fake that I am dealing with the loss of my Grey. Fake that every breath doesn't burn with grief and guilt.

Fake that the fact that he has started to feel like a dream is making me lose my mind!

Fake that I remember what it feels like to have him melt into my arms.

Fake that I am not alone.

Fake that I know what I am doing.

Broken. There is no other way to describe how I feel. Loving him hurts. Missing him hurts. Knowing that my boys and my darling Nicole are missing him hurts. Knowing that Nicole is faking it for me hurts. She still cries herself to sleep at night sometimes.

Broken.

I wish I knew how to proceed from here. I am away from home and my wife most of the nights during the week. It is almost as if Nicole and I are just dating. We see each other less that people that are dating. This can't be healthy for our marriage. But she never complains. She is always supportive.

Broken.

I wish I knew where things are going from here.

Thank God that I have my family.

Really! Are You Freaking KIdding!!?!

2009-09-27T20:43:00.000-07:00

Whining ALERT!

If you do not what to read a grown 40 year-old man's whining, vacate this blog immediately!

This past year is getting on my last nerve. I have always felt very blessed in the health and good fortune that my family has been given by the good Lord for the majority of the 12 years that Nicole and I have been married. Starting with Greyson's illness, though, I have to admit that I am beginning to feel a little picked on. WE have not gotten any breaks as of late. In the first months after losing Greyson, we were very blessed and taken care of by our friends and family. With every one's help, we were able to pay off most of Greyson's Medical Bills. But since that, we have been having quite a few potholes. Most of them have come in the form of very expensive AC repairs. We have had to spend almost 3,000.00 dollars on replacing worn out components since March of this year. Every time that I think that we have the situation fixed, BOOM! RATTLE! CLANK! We replaced the outside compressor unit and the blower fan and motor, one would think that nothing else could break.

WRONG!

Nicole called me this morning, and told me that the AC was making a funny sound. "I'll call in a repair" I said. By 7:00pm, Nicole called me again, "Smells hot in the AC room and all it's doing is buzzing. It stopped working again!"

SHIT!!

Of course our AC man has been out of town for the weekend, which means that we may not even get a call back tomorrow.

I know in my heart that we are still blessed and that I shouldn't whine about this petty stuff, but come on! It's got to STOP sometime! Please!

Envy? Yes, I'm Sorry to Say.

2009-09-27T17:12:00.000-07:00

Many of you out there read my wife Nicole's blog at http://www.greysgift.blogspot.com/. And have done so even before you started to read mine. I have always been blown away at the number of people that follow Nicole. She has 43 people that follow her and subscribe to her blog on blogspot, meaning that they are notified when she posts a new blog. I think that at the beginning, she and I both started our blogs to help us process our feelings and let those that care about us know how we are doing. At first we were both using it to vent the burdens that go along with losing Greyson.

Now, Nicole actually started her blog right after we received word from the Doctor that Greyson was terminal. She opened herself up and shared everything that happened during Grey's last days. Very powerful stuff.

I was much slower to join in. I came from a family background that involved allowing one's emotions govern your moods and actions. I have had in some ways a much harder time dealing with Greyson's death. Not because it hurts more or I loved him more that Nicole, because I have always been much more likely to see the negative side of things instead of the positive. For me emotions have the power to effect my interactions with others and affect my personality. For me worrying about something is just a natural step in the process. If I don't worry and obsess about something in the right amount, then I think that I didn't care about it in the right way or amount. A bit obsessive huh?

That's just how I always have been. Nicole is not like that at all. She is truly the sun to my moon. While everything is dark and foreboding for me, it is bright and hopeful for her. I have been trying to learn from her our entire marriage and I am proud to say that I have made great strides to improve on this in myself. You would have to ask Nicole for confirmation. I do have an annoying tendency to assume to much sometimes and take things for granted. However, one the primary ways that my "glass half empty" personality quirk still dominates me is when I am down or sad, and it really comes out and rears its ugly head in my blogging.

I have come to blog the most when I am down and missing Greyson terribly. The sadness just takes over. I don't have to tell you that, do I? Those of you that are still following this train wreck of a blog know that anyway! I made the decision while I was holding Greyson in my arms those last few days, that I would attempt to express to anyone interested the depth of my grief and the magnitude of my love for Grey. That is why I started to blog shortly after his death. I have driven many away because they find my pain too much to bear. And yes, the competitive side of me chafes at the fact that Nicole has such a larger following that do I.

In the truest sense though, it is not the fact that people are drawn to Nicole blogging that gets me. It is Nicole's ability to see the beauty and the good in our losing Grey. She has this complete faith that Greyson is in heaven and visits often. Not only that, but she has noticed things that convince her that Grey is dropping hints that he is indeed visiting and remains close. I find myself feeling left out that I can not see. I struggle with my inability to sense that he is near and happy. I find myself doubting how Greyson can be alright with out us.

There wasn't a minute that Greyson didn't want to be held, and nothing that couldn't be fixed by his Mommy and Daddy's arms. Doubt creeps in and shakes me. How can Greyson be okay without us there to take care of him and hold him?

It has been months and months since I have had any kind of dream about my son. I haven't seen him or felt him. I miss him. And yes, I envy Nicole that she has. I am glad, but I still wish that I could too.

Who ME? Yup! Selfish!

2009-09-24T05:30:00.000-07:00

Sometimes looking the mirror can be an uncomfortable experience.

These past couple of weeks, I have been a mess. Every morning I spend on the "this time last year" pity party that I have organized for myself as a routine for the count - down to the one year anniversary of Greyson's death.

Misery...

That's been my focus these past couple of weeks.

I had been attending a Grief Counseling Group for the past few weeks. It was, not a good fit. I found myself doing and behaving in a manner very unlike me.

I bailed.

I didn't call. I didn't step up and say that I was quitting. I just didn't show up. I have never been so irresponsible. NEVER.

Probably should have been my first clue.

Last week, at the insistence of Nicole and our grief counselor, I met with Nicole and the counselor at Nicole's scheduled appointment. I had to take the boys home, so I was late. I had some hard venting moments. It wasn't pretty. I guess that I have been bottling up some things. The thing that I harped on this particular secession was the fact that I was not only grieving the loss of the most pure, loving soul I have ever been blessed by, but the fact that I was being forced by our genetics to stop having children. For the past 10 years I have identified myself as the "Mr. Mom" staying at home with the boys so that we don't have to do daycare. Let me just put it this way, I have some anger issues about being forced to end this chapter of our lives in an, as I see it, premature way. We are being forced to stop having children because of not wanting to subject another baby to Krabbes Disease.

Not only have I lost my sweet little boy, but have lost my identity, Stay at Home Dad.

In retrospect, This must have had a huge impact on Nicole. Seeing me so distraught over losing our son and also having to accept no more babies was too much. She denies it, but not 2 days later, my darling wife Nicole offered me something more precious than any treasure. She offered me.....

To try one last time. She told me that really, what's a 25% chance of having another Krabbes Baby?

She, as broken hearted and grieving as she is, so wanted to see me happy and not miserable, that she was willing to tempt fate and give me my wish, a BABY.

A strange thing happened.

Faced with my greatest desire, I...

I saw myself. I saw myself for the first time in a long time. Not the grief, not the misery, not the poor, broken - hearted father, MYSELF.

Selfishness. I saw a very selfish man.

Nearly 3 years ago, Riley was spending his last school year at home with Dad. He would be starting Kindergarten the following year and I was scared. I liked having a baby at home with me. I liked being the father of a little baby. I adore babies. I love all children, but having a baby at home is by far, my favorite. Logically, I knew that at some point this part of our lives as a couple would be over. We aren't getting any younger after all.

Nicole was in heaven. She was totally happy. She was looking forward to having all of the boys in school and not being the couple with "little ones" anymore. Well, I had other ideas. I wanted another baby. And I had a plan to convince Nicole. We would try every trick in the book to have ourselves a little girl. At first Nicole didn't want to talk about it. It's funny, thinking back about it, I knew that I would get my way. I knew that Nicole wouldn't deny me something that I wanted this much.

I wanted. My wants. My needs.

Oh God.

All of the pain. All of the grief.

I caused it all.

If I hadn't been so selfish, Nicole would have been happy with the family that we had been blessed with. She had no unfulfilled needs, she was content. The boys were happy. Life was good. Why wasn't I content?

Now, I am not taking responsibility for Greyson's illness. Just the fact that I have indirectly caused the people I love pain. God would have shaped our lives as he saw fit. I truly believe that Nicole and I were met to be Greyson's parents. So logic would dictate that God would have given him to us anyway. Still I must grow - up. I have to accept that I am responsible for choosing to be content and happy. I am reasonable for the happiness of my family.

I told Nicole no.

We can't replace Greyson. We can't take the risk.

I am humbled.

Want other man is so blessed? What have I done to deserve such love from this woman? That she would risk herself, to tempt such pain again?

My path is clear. My goal set. I must finally accept my role as an adult. I can not longer afford to be selfish.

Nicole, the love of my life, deserves more. I love you!

And thank you.

Growing Pains!

2009-09-19T09:27:00.000-07:00

Boy! What a week!

I really thought that I have been handling the loss of our Grey pretty well. But, after sending Nicole off to work twice this week in tears, I decided that I needed to make a change. I dropped my bereavement group and made appointments for just me. I have been having irrational episodes of anger. Anger about what I have been most proud of, telling Grey it was okay to leave. To not struggle. To not be scared.

I hate myself now.

I don't know what I was thinking.

The only thing that makes sense to me is that I miss Greyson and I want to hold him again.

The old tattered T-shirt of my grief has settled in again. The familiarity of it is almost comforting. The snug, tight caress of it over- whelming.

My grief councilor assures me that what I am experiencing is normal, that grief comes in tides.

I just feel like I'm CRAZY!

Seth has been busting at the seams all week. One of his friends invited him to spend the night this weekend. It is good to see my boys having good experiences in making friends. He and his buddy have been planning what they will do all week. For those of you who don't know, Seth is our vocal child. He never stops talking. So he has done more that his share of carrying on all week. Almost to the point of annoyance. I love seeing him excited, happy.

Not all is well and good though.

Riley is the typical little brother. He idolizes Seth. His big brother is the COOLEST EVER!

He has gotten swept up in Seth's excitement. I have been anticipating the moment that he realizes that he not going to go with Seth over to his friend's house. That is going to be tough. It makes my heart hurt.

I so want to spare him that disappointment and rejection.

We ended up getting the boys new bikes. Not Luke, just Seth and Riley. When we went to the storage area that we have to get Seth's bike out, I couldn't find it! It wasn't there! I don't know if it got stolen, or I gave it away, or what happened. All I know is that it's gone. Well, this is a disaster! Seth and Teddy HAVE to ride their bikes! Seth can't go without his bike. Of course, Riley must have a bike too!

Nicole really stepped up! She, after just getting home from work, turned around and went back to town to get the boy's new bikes. Riley has to get one too! Inside, I cringed! Knowing what Riley is thinking and assuming.

Nicole calls me at work today and tells me that the boys have been up for hours practicing on their bikes. She said that they have been so cute! Seth has helped Riley and been such a big boy.

I could tell by the tone of her voice, that there was a but,

"Riley is really disappointed. He figured out that Seth is going to Teddie's by himself. He is breaking my heart! He won't stop crying."

Oh! Man! growing pains suck!

I hate to disappoint Riley, but I can't force Seth to take his "little brother" with him. Can I?

Nope. That wouldn't be fair. I so want to not disappoint Riley though.

Growing Pains!

I hope that they will not let them affect their relationship with each other.

I'm Not The Only One

2009-09-12T19:28:00.000-07:00

Riley James Morris is our 6 year old.

I knew from the very beginning that he was special, it just took 6 years to understand how special he truly is. I love all of my boys completely and with all my heart. But as parents, we have unique relationships with each of our children. It is just natural.

6 years ago, we had just Luke and Seth. I had begun to work nights and weekends so that we could keep Seth out of daycare because of his special diet. We didn't want any accidents to happen and him to get a hold of foods that he can't have because of his PKU.

A very curious thing happened. I had not really been overly excited to be a stay at home Dad, but I had discovered that I really enjoyed the extra time with the boys. So, on a whim, a sudden moment of inspiration, I decided that we needed to have another baby. We knew about the risks of having another baby with PKU, but we decided that we needed to try and pray for the best. Besides, the baby could live a very healthy life with PKU.

Fast forward to December of 2007. We were having another baby. Again it was me wanting another and talking Nicole (wasn't hard) into doing the whole baby thing all over. Riley was ecstatic! Neither of the other boys had ever been so PUMPED about becoming a big brother. Riley just could not wait. He was amazing. When we were expecting Greyson, Riley was only 4 1/2 years old. He was a huge help to his Mommy and would watch me talking to Nicole's tummy and do it also. It was so precious and cool! (can't call a boy precious! Shh!) I had not a doubt that Riley was going to make the best big brother in the history of big brothers! He helped put the baby furniture together, helped Mommy paint the room, read books to Mommies tummy and, for a 4 year old was really quite patient about needing to wait for the baby to grow inside Mommy.

Nicole and I have talked about the things that were different for us while we were expecting Greyson. At the time we didn't understand our worries, after all we had 3 beautiful boys and PKU is manageable. Still, we had serious conversations about how we would care for a seriously ill child and what our limits would be as to insuring a certain quality of life for such a child. I just told myself it was because Nicole and I were getting older, more mature and approaching having another child the way that we should have approached having all of our children. We definitely had a much different sense of urgency and need to get things taken care of for Greyson and this urgency carried on after he was born. Nicole seem possessed. She was in a hurry for everything, starting Cereal, sitting in his highchair, getting him baptized, all of it. Try as I might, I couldn't calm her and convince her that we could slow down and enjoy. She always said, "We need to get this ____ done, that way he is really ours. We get to keep him!"

Riley must have picked up on this intensity also. He was totally devoted to his little brother. He would sit and do anything that he could think of to make Greyson smile or laugh. He would talk to him incessantly and would be instantly at Grey's side when he would start to fuss. Greyson returned Riley's love in kind. He would crane his neck to see his big brother and wait in anticipation for him to show him attention. Those of you that know us is aware that Nicole is a huge Dave Matthews Band Fan. You might know that so is Riley and Greyson was quickly following suit. When listening to music, Riley is always singing, dancing or carrying on is some way. Greyson loved this about Riley, because Riley would include him in the fun. When Greyson started to lose the ability to move, Riley was undaunted by this, he did the dancing for both of them. He would grab Greyson's arm and move them to the music. When Riley wasn't around you could see how much Greyson loved this because when a song that he and Riley would dance to would come on the radio, Greyson would stiffen in anticipation of dancing with brother.

How Greyson loved his big brothers. They were superheros to him, all of them. He adored each of them. I miss the connection between Riley and Greyson the most though. I think is is because of the fact that Riley was so proud to finally be a big brother.

I remember that shortly after Greyson died, I was holding Riley on my lap and was drying him after his bath.

Riley was very quite and suddenly, sadly, said, "I'm not a big brother anymore. I'm a baby brother again." My heart screaming, I managed to hug him and whisper, "Riley boy, you have always been a little brother and you will always be a big brother."

Riley sat quietly and seemed to think it over, "Even though Grey is in heaven?"

I choked out my reply, "He's still your little brother, even in heaven. And someday, after you have lived your life you will get to see Greyson again."

I have been amazed on several occasions, Riley's ability to express his grief, confront it and then dismiss it. This was one of those times. He reached up, hugged me, and whispered, "I miss him too Dad." Then he jumped off of my lap, "can I watch cartoons until bed?"

The next weekend, after we had come home from Greyson's memorial service, I set Grey's little blue block urn down on the coffee table. Riley placed his hand on top of it and asked, "Dad, what is this?" Nicole and I took a deep breath and explained to Riley that it was what was left of Greyson's body inside. Riley asked, "So Greyson is home?" After Nicole told him yes, Riley grabbed the urn and ran to Luke and Seth, "GUYS! Guys! Grey is home! Grey is home! I am still a big brother!" I smiled. Riley had just answered all of the questions from my family (Parents, sisters) about why we opted to have Greyson cremated. Greyson belongs at home with us. Not in some graveyard.

Inside though, my heart was weeping, my poor boys. My poor Seth, my poor Riley. Luke had known throughout Greyson's illness how sick he was, being 14, Nicole and I had decided to trust him and include him in protecting the younger boys from the stress and worry about Greyson. He had done nothing but impress me with his poise and thoughtfulness. How my boys have been forced to grow up in a way that no child should ever have to. No child should ever have to confront the death of a sibling. Children are supposed to believe that they are indestructible. It is an important developmental stage. It allows children to have the spirit of explorers and pioneers early in life. I worry that they have lost this and will be forever affected by Greyson's death.

Our Little Men. I wish that I could spare you this heartache.

9 Months Today. A Story About Our Grey....

2009-09-12T09:34:00.000-07:00

It has come.

Today it is exactly 9 months since we lost our beautiful baby boy Greyson William Morris. He would be 6 days away from being 21 months old. It is hard to believe.

Nicole and I have been having a bit of a rough patch.... Well, okay I have been having a rough patch and Nicole has had to suffer along with me. It just gets so hard sometimes.

I have decided that, instead of wallowing in my grief today, I am going to try a new tack. I am going to share our Greyson with all of you. Let those of you that didn't get to meet him get a glimpse of how amazing he was.

I had forgotten about this. Nicole and I were sitting together at the dinner table after the boys had finished their dinners and asked to be excused. We were talking about our days and just spending a few moments together before the next "Mom, or HeyDad!" was uttered. It wasn't long before our conversation turned to the subject of Greyson. I was telling her about a conversation that I had at my dentist appointment.

The subject of God had come up and I found myself talking to this friend about how I know that God exists. Despite the fact that he took our boy, I have no doubts that he exists. It is because I watched the spirit that made Greyson who he was leave his body in my arms when he died. Greyson's spirit was so powerful and bright that you really didn't notice that fact that he was sick. He just didn't look that sick, at least to me. After he died, he just didn't look like my little boy. He looked frail, so SICK.

This is how I now have no doubts that God exists. I have seen the effects of the indomitable human spirit shining out of the most broken of bodies.

Anyway, I got side tracked there. This conversation led Nicole and I to start talking about Greyson's spirit. How he was always so happy, even though Krabbes causes increased fussiness, Grey would only succumb to it rarely until the very end. Nicole, her eyes glistening, and tears welling up, reminded me of moments that I had nearly forgotten.

Greyson, like all newborns spent a lot of time in his bouncy chair, (a reclining seat that bounces) to protect his neck while he developed his head control. Before he started really showing signs that he was ill, at about 5 1/2 to 6 months old, he had gotten enough head control that we started putting him into his highchair for meals. Man OH Man! Was he proud of himself! He just thought that he was BIG STUFF! He would sit there, smiling and playing with us, saying "NO, NO" and shaking his head. When he thought that we weren't paying the proper amount of attention, he would slap the tray top to say "Hey! Over here!!" Look at me guys!

Even now, while I write this, I am smiling. We had some really wonderful times together with him sitting in that highchair. He and I would spend our mornings after Mommy and brothers went to school, talking and playing, smiling and loving life.

Happy times. My most favorite picture that I took of Greyson was in this chair. I call it "Syrup".

The picture shows how alive and bright Greyson was. He loved to eat waffles for breakfast, well, suck the syrup from the waffles anyway. When I took the picture, I was teasing Grey, telling him that he better not spit out the waffle. (He loved the suck out the syrup and then spit the waffle, minus the syrup, out.) The picture captured the beauty of Grey's spirit and smile.

9 Months....

I wonder if they have syrup in heaven?

I Love YOU Big Stuff!

Grey, Grey. A Letter From Daddy.

2009-09-10T05:10:00.000-07:00

Grey, Grey,

I just found out that last Friday, another little boy named Ethan joined you in heaven. Daddy didn't know Ethan, and he died of another disease called Gaucher's, but that doesn't really matter. Take him under your wing Grey and show him how to play and be happy. Help his Daddy to be strong as you helped me and let him know that everything happens as God means it too.

I Love and miss you Grey. I still need your help to be strong, it is so hard.

Yesterday Daddy went to the dentist's office. I saw people who I haven't had a chance to talk too since your benefit. It touches my heart that you have affected so many people. The kindness that our friends show Daddy by listening and shedding a tear helps make it hurt a tiny bit less, and even that is a relief.

Mommy and your big brothers, miss you and love you so much. I know that you check on them often. You know, Mommy and I had to make a new rule that they had to ask Mommy or Daddy to get your urn down from the mantel because we got worried by them taking it down so much. I have seen them have you sit with them to watch a movie, and I found it in bed with big brother Riley the other night. You are so loved.

Kisses Grey, Grey! I love you!

A Boy's Day Out!

2009-09-08T05:13:00.000-07:00

Yesterday was Labor Day. The last hoorah for the summer, and the signal that the serious business of the school year is at hand. Those of you that are or have a spouse that is a teacher understand the meaning of my statement. No more truly lazy days until the Christmas break, just lesson plans, meetings, homework and bedtimes for school days. In my case, this means coming home after working a night shift to help wake the boys and coax them into getting ready in time to not be late for school, or going to pick the boys up after school because Nicole has to stay late for a meeting.

In all though, I can't complain.

I will tell you, after working 32 hours over the weekend, the last thing that sounds fun to me is making plans for an outing on Monday. I'm fried from the long shifts and sleep deprived due to having to function during the day and sleep at night. Nicole, was not having any of that.

My darling wife was on a mission. WE were going to do something with the boys this Labor Day. (I really think that it had more to do with trying to snap me out of my funk) "We need to do something cool."

I have to hand it to Nicole. She knows what will peek the boys and I's interest. I love history. Seth has gotten bitten by the same bug. I can lose myself for hours in a museum. I just have to read everything and see every exhibit. The boys aren't quite as committed to the details, but they love to see the antiques and the weapons. And if the exhibits are about a war or battle, so much the better. They LOVE IT! Well, it was decided by the time that I got home after my weekend, that we were going to see the Alamo. The boys were super excited. Now I haven't been to the Alamo in at least 12 years, so I was game. Once I managed to wake up, that is....

What fun! The boys were so well behaved. I say boys, not all of the boys, just Seth and Riley. Luke, I am finding, as a 14 year old, can't be seen with the likes of Mom, Dad an brothers. I am having a lot of trouble with this. It's as if we are a family of 4.

It turns out, that the program "Haunted Histories" that Nicole and the boys watch on Sunday's just happened to have San Antonio and the features city. I had to ask Nicole why I noticed the boys looking around the Alamo in a worried manner. "They are on the look out for the ghosts of the Alamo" she whispered and smiled. The show had spoken of the stories of the defenders of the Alamo haunting the Texas Shrine. What a HOOT! We were outside getting ready to go, when a nice man in a "Texican" costume approached us. It seems that one of the businesses on the grounds of the battlefield had done an archaeological dig on their property and had decided to turn their business into a mini-museum complete with a scale model of the Alamo as it was in 1836. He was advertising the museum dressed like a Texan of 1836, complete with a Bowie knife. I asked if the boys could take a picture with him, you should have seen Riley's face when the gentleman pulled out his Bowie Knife for the picture! It was priceless!

All in all, a very enjoyable, inexpensive outing! Good job Nicole!

I think that the thing that I find the hardest about losing Greyson is the "what ifs". I found myself thinking of Grey constantly. Nicole was too. I knew she was when, in the gift shop, she mentioned to me that we needed to find a Star tree ornament for the Christmas tree. I have been lost since the start of the school year. Stupidly, I thought that I have been concealing this fact from Nicole. I really believed that I was keeping it together for the most part.

WRONG!

After we got home, I happened to mention to Nicole that she hasn't been as affectionate as she is usually. I should have not said that! She has been very upset that I haven't been able to find my way out the "funk" that I have been in since we got back from going to Buffalo, NY. She said that I have been irritable, snapping at her and the boys, no fun, not smiling, unable to get anything done to help out at the house, etc, etc. And if I was wanting affection, should snap out of it and be "normal" so that I encourage affection........

Again.

I have been neglecting the things that are most important. Leaving the woman that I love alone to hold the wolves at bay. I have abandoned her and the boys. I have made things worse for myself and the ones I love.

Boy. I need to man up and give Nicole and the boys what they need, me. Not sad me, happy, loving me. Help me Greyson, I can't remember how to be happy, how to breath without pain.

Wrapping My Mind Around It....

2009-09-05T09:47:00.000-07:00

It is approaching.

It is only 7 days away.

I can't seem to get my mind wrapped around it. I have never been one of those people that dreads a particular day of the week, month or year. I never gave it much thought. In the past I have always found myself shaking my head at people complaining about the day that they hate.

I'm not shaking my head anymore. Every month, on the 12th day, I relive hell on earth. I dread it's coming, and once here, I don't want it to pass. It's going to be 9 months this time. SHIT! 9 months.

I keep trying to tell myself lately that I just need to force my mind to see it another way. I need to remind myself how Greyson would be suffering if he was still here. That his smiles would be gone by now and he wouldn't be able to respond to us anymore. His spirit was amazing, but it too would have sub come to the ravages of Krabbes Disease. His spirit could no more have continued to overcome his disease than I could keep him here. Isn't this hole in my heart worth knowing that he died on his terms, still able to smile and give kisses?

Yes.

I have been torturing myself pretty relentlessly lately.

Going over each and every step and action that we took with Greyson, every decision that we made and the results.

And I have come to the same conclusion that I do every time. I would do everything exactly the SAME! I would not change a THING!

I admit, I have cursed myself because of this conclusion. How can I be so selfish as to not want to prevent Greyson's suffering?

I keep coming up with the same answer. I needed him in my life.

I like who I am now because of him.

Yes, I hate hurting!

Yes, I miss him!

Yes, I still cry myself to sleep on occasion.

I have to continue to try to master the lesson that my boy taught me. Living!

Greyson LIVED!

He loved every day that he opened his eyes. He took it for what we adults have forgotten, a blessing!

A gift from God!

I want to learn to look at each day that way..

I want to look at life like Greyson...

I'm flunking out right now, but I will continue to study until I learn the lesson that Greyson taught us all.....

I will learn to live...

September 2009! National Newborn Screening Awareness Month

2009-09-02T14:53:00.000-07:00

Yesterday was the 1st of September, the day that Greyson's Law officially takes effect. The state department of health still has until September 2010 to fully implement all of the tests and provision of Greyson's Law, but still it was a big milestone in the Morris household. Very significant if not bitter - sweet day.

I passed the day very unceremoniously. I was sleeping. Luke has been home all week this week so far with a bug that he picked up at school. "Aren't the first few weeks of the school week grand?" I don't know if it was the fact that I feel bad today that I slept all day yesterday, (fighting what Luke has) or just me shutting down, but I blew it. And my feeling bad today didn't help me correct it today. I had intended to get Nicole some flowers and a balloon in celebration, but of coarse, didn't. I SUCK~!

I have been fighting a overwhelming feeling of being in limbo right now. I was going to start school this semester, but didn't get all of my money issues into line in time, so that has been postponed until nest semester. I am very anxiously awaiting a call from the Texas Health Commissioner's Office asking me to be a part of the Advisory Committee on Newborn Screening, but nothing yet. So here I sit feeling like I am adrift.... I need to get off my butt! I do have much to do. I need to get a planning committee together for the fundraising walk that we want to have on the 1 year anniversary of Grey's death.

Needless to say, I have a lot that I want to accomplish. All I need is to get started.

Grief is Like a Storm

2009-08-29T05:57:00.000-07:00

You know, I have been getting a little discouraged here lately. Nicole and I had a wonderful time at the symposium and made some lifetime friends. People which, I can really see having a friendship with for the next 30 years. I was really in a good place in terms of my grief while we were there. Even the following 2 weeks went well. I was comfortable with Greyson being on my mind, but not occupying my every thought. I was functioning and making plans on what to do for the next few months and how Nicole and I are going to tackle organizing our first fundraiser on Dec. 12, 2009. The one year anniversary of Greyson's death.

This week, everything changed. Not matter how hard I try, no matter how much I think about the good times and the fact that I wouldn't want Greyson to suffer the ravages of Krabbes Disease, I feel unsettled. I feel lost on the ocean.

Adrift.

I know that I love all of my children, I have never doubted this. With Greyson, I love him just as I do the other boys, but it is different. I have never been uncomfortable about letting the boys explore and wander away from me. Knowing that they will always return. With Greyson, I could never bear to leave him. I took more days off to spend with him than I have for all that other boys put together, and this was before we knew that he was sick.

My grief councilor has told me that the reason I was so attentive to Greyson was because in my heart I knew that we were going to loose him.

I am lost in a ocean of grief. I have no way to navigate. I am just floating out there lost in this endless ocean. I feel like a sailor lost in the Bermuda Triangle, every time that the storm seems to be abating, the wind and rain tear at my clothes. Though there are periods of calm, but there is always more rain and wind.

Unconditional Love....

2009-08-28T15:13:00.000-07:00

I will admit it freely. I am very broken and I have been going to grief counseling pretty much since Greyson died.

Growing up, I never thought much about the whole grief and living thing. You know, when your a kid, the only people that die are grandparents, and they are, just expected to at some point. My parents always approached it as, "Yes it is sad for us that Nonnie is up in heaven, but she lived a full life and she was very old and, it was her time to go to heaven." The logic and natural order of life was just, ...... reassuring and, natural. I was sad, but happy for my grandparent because, they had been ill, no more pain, no more fighting the fight. They had earned their rest.

Death was a natural part of life.

How innocent! How perfect! I never realized how sheltered and protected I was as an child growing up. I never had to experience the lose of a parent or a sibling. No one that I loved had their life cut short. I never had to experience a TRAGIC death, I was untouched by tragedy.

I feel that I have failed as a parent. My boys have lost the innocence of their life. They have felt tragedy. They now know that death can visit anyone of us at anytime, the fragility that is life. Luke, Seth and Riley have been robbed!

In grief counseling today, I finally told my group what I have come to believe since our returning from the Hunter's Hope Symposium in Buffalo, NY. I have told myself and I think that I blogged about it once...

Greyson was love. His spirit just radiated love. Love of life, love of waking up each morning, love of family, love for ...... me.

I thought back about each and every time that I would walk in the door after working the night shift and Greyson would literally shake in anticipation when he saw me. Because nothing worked, he would become stiff and smile the most beautiful smile that I have ever seen. There he was, unable to move, unable to play and he was happy because I was there. I would pick him up and everything was perfect in the world. He was happy and content. We were attached.

I have come to the realization that Greyson was not giving to us without reward. Yes, his love for me, Nicole and his brothers and his Nana, was great and given freely.

But we.

We.

We were filling him up with our complete acceptance, our love of him just as he was. He was able to give to us unconditional love because we loved him unconditionally. Without regret or remorse. WE LOVED HIM!

Attached is a picture that has become very special to me. At first, I wasn't very thrilled with this picture, It was taken at my 40th birthday only 2 weeks before we lost Grey. In it you can see that Grey was getting much weaker. But his smile and love are strong and bright as ever. To me, the name Greyson has come to mean, a shooting star of love.....

Reality Just Stinks!

2009-08-26T05:25:00.000-07:00

Monday was the first day of school for the boys. Riley and Seth were so excited. Luke was the calm, old pro and to his credit was very patient with his younger bothers and their very loud and overwhelming enthusiasm.

Good Job Luke! You make me so proud.

I feel guilty though. Maybe that is why I haven't blogged about it until today. I forced myself to wear a smile and to be excited, but in truth, my heart was struggling mightily just to function. It all came crashing in on me again.

Firsts....

A lifetime of firsts unfulfilled.

It all seems as a dream. My arms ache and barely remember what it was to hold him. No first step. No first day of school, ever! My poor little boy! I couldn't protect you. How I wish I could have. I would have given my life to spare you what you had to endure.

I never understood the human capacity to dwell on things. I have been around death and the dying in my career on several occasions. I always wondered about some peoples tendencies to wind up stuck after the death of a loved one.

I get it now!

I love all of my children. This is a unalterable Truth. Nothing will ever change this fact. I worry sometimes that I become too overwhelmed by my feelings of grief. I wish that I could be more like Riley. I have lost count of the times that he and I have been hanging out and He will suddenly put his head on my heart and say,

"I miss Grey."

This always wrenches my heart. I ache for the realization that Grey wasn't the only one of my children that I could not protect, my children have had their innocence ripped from them.

It always lasts only for moments, and then, Riley will jump up and say,

"Love you Dad! I'm going to go play!"

Wow! Just like that he has processed his grief, recognized it and moved onto something else. The strength of children has always shocked me. Grey showed it. Riley and Luke and Seth are shining examples of it. Each of them grieves Greyson's loss in his own way, but they also have the ability to let that grief go and continued to live. We adults could learn from their example.

2009-08-22T23:32:00.001-07:00

Sweet dreams my darling family. I love you so much.
Greyson, if you are able, I would love you to visit daddy in his dreams tonight. Daddy loves you.

My Head is Swimming!

2009-08-22T19:36:00.000-07:00

I haven't blogged in weeks.

I think the last time I even thought about it was late one night at work; not always my best of times, my thoughts very susceptible to despair and grief. I distinctly remember feeling a growing apprehension about the up coming Hunter's Hope Family Symposium. What kind of people were we going to meet, would my grief and newness to loss make me unable to handle my emotions? Would we fit in? The rapidity of Greyson's disease progression made many of the choices we had to make painful and stressful. Would the other parents at the Symposium understand and except our decisions and respect them in regards to choosing to not prolong Greyson's life?

We were also flying out to Buffalo, NY on the dreaded 12th of the month. Exactly 8 months to the day since our sweet boy left us. I have never placed much stock in superstitions or "bad days" per sae, but the 12th of each month is a very difficult day for me, my thoughts never far from Greyson, my eyes forever flitting back to the clock to see if it is yet 2:08 pm.

That is not to say that I was dreading our trip. I must admit, I found myself actually excited at times. I have been feeling increasingly secluded, not wanting to burden Nicole, my best friend, my confidante with my despair and grief. She has so much of her own to handle. I just don't feel right unloading my crap onto her. I know! I know! I need someone to confide in too. Someone that will just listen and be a sympathetic ear for me to get rid of the poison that comes from grief. Nicole has told me before that she worries about me, because my work cuts me off from others. My only contacts besides her and the boys are my clients, and I definitely DO NOT need to be sharing my grief with them. Many of them are dealing with their own stresses. I am to provide respite for them, not weigh them down with my problems. I must admit, I do not have any close, close friends, at least not the kind that I would be able to lean on for support. This is not to say that I am short on people that care for me and want to help me. I am hard to get to know and I have grown over the years apart from all of my personal friends. Besides family, all of my friends were Nicole's friends first.... I feel that she should take priority with them over me.

No one really ever asks me how I am doing anymore. My sisters have stopped calling and are busy with their families. Nicole has enough to deal with. My best friends have disappeared or are too busy with their lives. I have never made friends easily. I do feel that I need to make it clear that I do not want to hurt any one's feelings. So many people have been nothing but wonderful to me and my family.

I just don't feel like I have access to someone with whom I can completely open and blunt with. I want to be able to rant, rave, scream, be angry at God and swear and not have the person that I am sharing my feelings with commit me to a loony bin or run away in terror. Nicole can not give me that right now. No grieving Mother could. Let's face it, I grew up in a house filled with and run by women. I shock many other men with how comfortable I am facing my feelings and emotions head on. I had a gay man that knew me once tell me that emotionally I was also a gay man. WHAT THE HELL IS THAT?!? Because I don't wall off my feelings, and am straight, I am weird?

I have been trying group counseling, but it just isn't working for me. How do I make another grieving father understand that I lost my bud, my baby, my sweet little boy that loved me completely and unconditionally, when they have never experienced such love? Greyson loved me just as me, and I loved him just the way he was no matter what. He was love.

I am lost without him... I miss holding that love in my arms and feeling him snuggle in and melt into me, gaining safety and security from me.

The good news is that Nicole and I found ourselves taken in as family at the symposium and it was nice being around people that just know and understand where we are and what we have experienced. I really thought that I might have made a connection with a couple of other father's there, that remains to be seen.

Grey,

I love and miss you son. Each and every day I am more and more proud of the job you did teaching me my role in this world and showing me the path that I have and the work I need to finish. Words will never do what I feel justice.

Love,

Ah! Da!

This is Nicole and I with Jim Kelly and his Mother -in- law Jacque Waggner. We have given them a symbol of Greyson's Law in Texas.

2009-08-08T23:07:00.001-07:00

Here we are. Another night of going to bed by myself.
Now I lay me down to sleep, I pray my Grey a visit in my dreams to make, and if I die before I wake, I pray the Lord my soul to take to be with my Darling Greyson forever, this is the plead I make!
God bless Nicole, Seth, Riley, Luke and Nana for I love them so.
Amen.

Goodnight Grey, Grey. I love you!

2009-08-07T04:07:00.001-07:00

It is the very wee hours of the morning. I have just finished a night of work, long lonely hours spent, my mind free to wander freely through memories. These times are especially hard for me, though I try to distract myself, it just doesn't work. Grey's death always seems more real this time of day. The Depth of my missing him endless, my heart more empty. I find myself harder pressed to remember the blessings that I still enjoy. My sadness overwhelming.
Oh Grey! Daddy misses you!
Play hard and fly high little man!

To Blog or Not to Blog?

2009-07-18T17:07:00.000-07:00

When I started blogging, it was more of a form of release than anything else. A way to express my feelings, to myself more that anyone else. There were days that I blogged 2 or 3 times a day. I guess that means that I'm starting to deal with Greyson's death better. I wonder?

As I am sure you know, I have begun to blog less and less. Sometimes I wonder if I should continue? Am I wasting my time?

I guess that the answer to that question is relative. Obviously. So here I go again, trying my best to sift through all of my feelings to figure out which, if any are important. I am amazed that there are so many that rattle around in my head. It is really quite crowded in there.

The past weeks have been very eventful. Nicole and I, along with Senator Carlos Uresti, appeared on the SA Living show on Channel 4 WOAI on Thursday, July 16, 2009. We were trying to get some of the information about Greyson's Law out to everyone in the San Antonio area. It went really well.

To see it go to:

http://woai.com/content/livingvideo/default.aspx?videoId=717231@woai.dayport.com&navCatId=13&articleID=717231

I am so proud of Greyson! His Legacy will live forever. In his short 11 & 1/2 months, Greyson has touched more people than I ever thought possible. His spirit was amazing. Despite his illness, people were drawn to him. The glow of his love for life and his family blinded others to the serious nature of the disease that was destroying his body.

Nicole and I received copies of his medical records that I had requested from Greyson's Neurologist. I was struck by the fact that I too, a trained nurse, had been blinded by his spirit as to how many serious, ominous symptoms that our sweet boy was exhibiting. I remember being shocked and devastated when we got the news that Grey was terminal. In my 13 years of nursing, I have been struck by the number of times that the families of terminally ill people act as if they had no idea of how sick their loved one was. I get it now. Our love for our ill loved one blinds us to the degree of the illness. I don't see this as selfishness anymore, but as a safety measure to allow the family members to continue to function as caregivers. Without this safety measure, Nicole and I would have been crippled and paralyzed, unable to do the little daily activities that Greyson so loved. Nap times, meals, baths, and just snuggling him would have become incredibly hard.

As I sat reading each of the assessments in order, I realized that I had noticed many of the ominous signs, but my devotion to my son immediately put up a wall. I needed for him to have a chance, I had to have hope for his sake. If I had not, I would have been unable to do anything but sit and hold him, dreading what was to come next. That would have destroyed not only me, my family, but it would have killed Greyson's spirit too. And that spirit never surrendered.

On the Wednesday night of that last week, Greyson had been having a very difficult time. The degeneration of the Myelin Sheath of his nerves had progressed to the point that we had to give him sedatives to keep him calm and relaxed so that he wouldn't hyperventilate. The most difficult thing was that the sedatives made his personality disappear. Nicole and I, earlier in the week, despate to seen our baby smile and react to us had tried to back off of the sedatives, and it had been terrible for Greyson. He had struggled to regulate his breathing and had been overtaken by a terrible symptom of Krabbes, a Neuropathic Cry. He was totally inconsolable. No matter what we tried, we could not calm him. So we had gone back up on the sedatives. Grey was doing well. That Wednesday night, I was giving Greyson his bath. We were keeping his routine as normal as possible, doing all of the things that we had always done. Nicole couldn't bear it. It was awful. At this time, Greyson had stopped eating or drinking for 3 days. A normal part of the dying process, his body was drawn and he had lost weight. So I was giving baths. Greyson had always loved bath time, looking back it was probably because the warm water soothed his inflamed nerves.

I was babbling like an idiot, like I always do when bathing the kids, when all of a sudden, Greyson opened his eyes and looked up at me. I instantly knew that he had come out of the fog of the drugs, and was aware of were he was and of me... He smiled, the most beautiful, loving smile. My heart stopped. "Hey! Grey-Grey! Daddy loves you!" That was all that I could think to say.

My darling baby boy, Greyson William Morris, smiled at me again and gave me not one, but three of the sweetest open-mouthed kisses I have ever been given in my life. We finished his bath and he succumbed to the drugs once again. That was the last time that I basked the the glow of Greyson spirit, and I will always cherish this memory. He was letting me know that he was okay. He knew that Nicole and I loved him and always would. With that smile and those precious kisses he told me that we were doing that right things and that he was going to be okay.

As I write this I am overwhelmed by the effect that Greyson has had on me as a man, a father, and a husband. I will never be the man that I was before. I am reborn because of Greyson. I am struggling to not waste the knowledge of the precious nature of life. To be worthy of the completely pure and unconditional love that I have been blessed with though Greyson.

I will spend my life trying to live up to the blessing that God gave me.

And so I continue to Blog....

Seven Months!

2009-07-12T09:56:00.001-07:00

Today is exactly seven months since Grey died.

Seven months since I last held my baby boy, felt his soft breathing, smelled his hair.

Daily, I have to endure waves of different emotions. But I must say that the 12 th of each month is by far much worse. Every day I relive the last moments of Grey's life, today, many other memories make their presence known.

I have a memory of the first few weeks of having Greyson home after his birth. Having another baby was my idea, I wasn't ready to not have a young child at home for me to care for and be "Mister Mom" to while Nicole and the kids were at school. I think it was one of the first days after Nicole had gone back to work. Greyson was very spoiled. I carried him around constantly. For some reason I couldn't bring myself to put him down for very long. Well I had to go to the bathroom and I took Grey into the bathroom with me in his bouncy chair. After I was done and Greyson was crying, I bent down to pick Grey up and was rewarded by a beautiful smile. I remember smiling back and whispering to Greyson, "Promise Daddy that you will stay my little baby boy for a while, don't grow too fast."

I feel a great twinge of guilt whenever this memory comes home. Greyson kept his promise. He will never grow up, he will always be my baby boy.

I'm sure that I am in no way unique. I am sure that all parents that experience the death of one of their children go though this. The guilt for the little things that you didn't do, the impatience that you showed instead of taking a few extra minutes to indulge, the frustration that you felt when you wanted to do other things and couldn't.....

Not all memories are the best, some are just there to torture us. I know, I have been greatly tortured of late.

Feeling that I should have spent more time, been more attentive, done more to make it clear to Greyson how much the precious time that we have together meant to me.

I Love You and miss you Grey!

Fly high and play hard!

Luck?!?

2009-07-05T20:16:00.000-07:00

Luck!

We humans are so funny. Quite silly in fact.

We put such faith in the silliest things. Superstitious baseball players that won't clean their batting helmets for fear of bad luck at the plate, to the rituals that we all do to get "luck" for the most trivial of things. Lotto tickets, horse racing, football, you name the sport or pastime, and you find superstition and "LUCK".

You know, Nicole and I have been talking about luck a lot lately. Some of those conversations are of the type that no man or women should ever have to have with a loved one.

I remember when we met with Pastor Mark Simspon on the Tuesday of the week that Greyson died.

"You know that the odds are against you and your marriage surviving this trial intact." he said.

Odds. Luck.

Let me enlighten you on a few things with "Luck" and "Odds".

As many of you reading this know, Nicole and I are carriers for not just 1, but 2, recessive disorders. This means that both of us carry the trait that causes each inherited disease.

The chances of two people having 1 recessive trait, marrying and having children:

1 in 20,000

The chances of two people both having 2 recessive traits, marrying and having children:

1 in 4,000,000

Chances of our children being carriers:

1 in 2

Chances of each of our children having 1 of the 2 recessive disorders we carry:

1 in 2

Odds and luck mean nothing if you are the 1.

I also know something surprising too. Nicole and I are the luckiest parents in the world. I bet that some of you are thinking, "Oh boy! Bill's lost it now! His grief has finally taken over." You might be right, but not for the reason that you think. I mean it! Nicole and I have been blessed in ways that many will never understand.

I don't know that I can explain it, but I will try.

We all go through life wondering if we have ever been truly loved or in love. Some of us get lucky and know this answer. I will raise you one better, we all want to experience unconditional and pure love. Complete trust. Innocence and purity of spirit. Thinking yet?

I know the answer with every fiber of my being. I have experienced pure, unconditional love. I have bathed in the glow of a pure, innocent spirit and been blessed to be loved completely by that spirit.

Greyson was love.

I have spent much time since his death wrestling with some of the old, fundamental questions of human kind. Is this life all that there is? What awaits us after this life? Will we see the ones that we love and have lost again?

I cannot claim to have these answers. Lord knows that even now, even after experiencing God's blessings 4 times over through my children, even after being loved by a pure spirit like Grey, I still have my doubts. Maybe that is the point after all. Maybe that is why we humans forever chase and court.....

"Luck!"

Father's Love

2009-07-01T02:16:00.000-07:00

I have been working way too much the past couple of weeks. It has been taking precious time away from the family. I mean, we need me to get overtime, but since Grey's death, I have been keenly aware of the precious nature of time. I don't want to waste a second with the ones I love. I have been striving to make sure that I don't waste.

All the same I have to do what we need to bring home the "bacon" as they say. I have spent much of my adult life marveling over the stereo-types of our society. The Dad being the "bread winner" and stoic, hard to show emotions type. Dad's not being comfortable caring for the kids, or helping around the house. These things being the Mother's domain, loving and nurturing the kids more, making the kids the people that they will become. Dad's usually messing things up for the kids because of their obsession with discipline, their cruelty. I am struck now, more than ever with the stereo typing of parental roles. I can't tell you the number of times that I have heard; "No Mother should have to bury their child." or "out live their children." It seems our society assumes that the Mother's have more reason and right to grieve the loss of their kids that do father's. Father's don't have the capacity to feel the true depth of true emotions. LOVE is the women's world. not the man's.

I must be honest. This bothers me. A whole lot. People beware! I'm a man, I should be over the grief by now and back to my old self by now. Able to dismiss the grief. I not only cannot, but I WILL NOT! To do so would be like asking me to stop breathing, stop living.

I stand before the entire world as an example to the world of the true nature of a man, father, brother, husband. Fathers adore and love their children In ways that women could never understand. A Mother's love is deep and complete, men have written songs out of respect for it, our society pays homage to it.

Only father's of an exclusive club truly understand what I am trying so poorly to express. And my broken heart aches each and every time that another father pays the membership fee. I would never wish it on my worst enemy.

Father's should never have to endure the pain and guilt that comes with the death of his children.

Never.

What To Do Now?

2009-06-27T09:12:00.000-07:00

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

2009-06-24T07:08:00.000-07:00

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?

2009-06-20T11:25:00.000-07:00

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....

2009-06-15T07:57:00.000-07:00

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

2009-06-07T20:23:00.000-07:00

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...

2009-06-02T22:01:00.001-07:00

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?

2009-06-02T21:51:00.000-07:00

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.

Lessons Learned....

2009-05-29T05:41:00.000-07:00

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.

You Would Think...

2009-05-26T05:31:00.000-07:00

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.

I DON'T KNOW WHAT TO SAY...

Grey Speaks to Me, I Just Forget to Listen.

2009-05-22T20:49:00.000-07:00

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.

A Million Firsts That Will Never Be

2009-05-20T13:02:00.000-07:00

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.

Nothing.

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.

The Muck Just Keeps Going On and On...

2009-05-19T21:26:00.000-07:00

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.

NOTHING!

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?

Grey's Magic

2009-05-16T11:36:00.000-07:00

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.

5 Months.... Really?

2009-05-14T05:24:00.000-07:00

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!

Life and It's Firsts

2009-05-11T06:23:00.000-07:00

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.

Cardinals are 4-2-2!!

2009-05-09T15:21:00.000-07:00

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!

Greyson's Law is Almost!

2009-05-02T21:58:00.000-07:00

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?

2009-05-02T09:59:00.000-07:00

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!

Time is a Locomotive.....

2009-04-29T09:41:00.000-07:00

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!

2009-04-22T05:41:00.000-07:00

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.....

2009-04-21T11:05:00.000-07:00

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

2009-04-20T21:56:00.000-07:00

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...?

2009-04-16T14:10:00.000-07:00

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!

2009-04-14T05:38:00.000-07:00

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

2009-04-12T12:18:00.000-07:00

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.

Look Out Houston!

2009-04-10T18:43:00.000-07:00

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.

Cardinal's First Win!

2009-04-08T05:18:00.000-07:00

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!!

Staying the Course

2009-04-06T11:15:00.000-07:00

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.

My Dear Boy....

2009-04-05T19:57:00.000-07:00

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.

Love,

Ah! Da!

Baseball Fun Day

2009-04-04T21:13:00.000-07:00

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.

Out of the Mouths of Babes.....

2009-04-03T05:34:00.000-07:00

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.

My Sweet, Sweet Nicole

2009-04-01T05:57:00.000-07:00

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.

Syrup? Anyone?

2009-03-31T14:04:00.000-07:00

I worked last night. Mondays have been a work night for me for years! After Seth was born and had to be so closely monitored on his diet, Nicole and I agreed to rearrange my work week so that one of us was able to be at home with the kids. No daycare. It has been tough in some ways, (Nicole & I have NO time together) and very rewarding for me in others. I have gotten to be Mr. Mom for the last 9 years.

Anyway, I decided to stop on the way home for breakfast for Nicole and the boys. I wanted to stop at McDonald's but the line was insane. And Nicole was very specific, No food in the new truck. So I went to Burger King. I got the hash browns for everyone and the French Toast sticks for Riley. As soon as I got the bag and pulled it into the truck, the smell hit me. Some of the memories are starting to come easier now.... Grey with syrup all over his face, grinning from ear to ear.

Grey loved syrup! He would get excited when I went down the list of breakfast items, and just wiggle and smile when I hit on the one he wanted that morning. It went in cycles, but waffles drowned in syrup was a definite favorite. He would sit there just beaming, syrup all over his face, sucking the syrup out of every piece of waffle. And then spit out the pieces. Then, Baby Bird, mouth open! Another piece. Sticky! Sweet smell.

This picture is great! I took it one of those crazy mornings that Grey was just awesome. Giggling and smiling, playing with Daddy and just making a MESS!

Mornings like that were the best!

Makes me miss you even more Little Man!

Ah! DA! Loves you!

This is one of my favorite pictures. While sleeping today after a night at work, my memories visited me in my dreams. I was in the kitchen, making French Toast with, you guessed it, syrup. Another Greyson favorite. I felt Greyson's presence and heard him laughing, in the excited, hurry up Dad! Way that he did when he was ready for his breakfast.

It was a nice dream.

In my minds eye, I can see Grey, sucking on a piece of waffle......

Taking a Step Back....

2009-03-27T20:20:00.000-07:00

I haven't blogged in a few days. I guess that I needed a break. Also, I started meeting with a grief counselor. I really think that seeing her is going to be a huge help to me. Actually, she is the one that suggested that I needed to take a break from everything, working on Greyson's Law, blogging, anything that made me focus on my grief. So that's what I did.

She also said that after a break, I needed to re-read some of my past blogs. "!.!" Boy. The counselor said that the blogging is a very healthy thing to do, getting rid of the "poison" of my grief, and that we humans require that our grief must be witnessed. So she was glad to see that I am not internalizing my grief, but....

I now see why so many of you have been voicing your concerns. It took Nicole sitting down with me and reading me some of titles of my blogs and some of the more, memorial ones for me to see that. While expelling the poison of my grief might be a healthy thing, exposing friends, family and others who care about me, my wife, and my boys, to these unfiltered feelings, is not kind or necessary.

So the time has come. I must stop feeling so sorry for myself and refocus on making it about celebrating Greyson's life and Greyson's Gift, instead of my grief and my ability to describe it. The fact that we have been able to achieve as much as we have in such a short time is amazing. The impact Greyson has had and continues to have on people is very humbling to me as his father. The pride that I feel in my heart for Greyson is unbelievable, indescribable.

Grey, Ah! Da! loves you!

To all the people that have been worrying about me and our family, Thank you. Please know that I will be continuing to work on my grief and doing it in a more positive and constructive way.

The process will not always be pleasant or easy, I may revert to allowing the grief over take me, But I will never allow it to consume me the way it was beginning to. I must resist the temptation to surrender to the grief and to never feel anything again but numbness. I can and I will. I am nothing if not tenacious. My family needs me, and I need them. Together we will overcome our grief and find a way to carry on with the joys of living.

I have made this promise to our Greyson. Now I make to everyone else too.

A Spurs Game! Family Night Out.

2009-03-26T05:03:00.000-07:00

Tuesday night was the best. Nicole and I took all of the boys to a Spurs game at the ATT Center. The Spurs were playing the Golden State Warriors. I really didn't think that the experience was going to be all that great. After all, we bought the Family-night special tickets way up in the 200's. I expected us to be cramped, unable to really see and uncomfortable. Not so. The seats were up high, but we were on the end and right in front of us was a stairway, so Seth and Riley could stand up and not be in any ones way.

The Boys had a BLAST! They were bouncing up and down, cheering and shouting at the Refs. Even Luke seemed to really enjoy the experience. I can't wait till the next time. I kept finding Nicole and I looking at each other smiling at the joy the boys were having. Definitely a good memory.

Thanks Spurs! Thanks for the win and the best night out in a long time. I will carry the memory of watching my boys enjoy their first live game with me forever.

Grey, Grey

Mommy and I took your brothers to see the Spurs Tuesday night. They had so much fun. So did I. Mommy and I kept catching each others eyes. I know that Mommy was thinking the same as me. You were there, bouncing up and down with your big brothers. I could see you in my mind hanging all over them and screaming as loud as they were, having a blast.

I miss you Little Man, we all do.

Love you,

Ah! Da!

Can You Say.... Envy?

2009-03-22T10:30:00.000-07:00

I'm frustrated.

I consider myself a reasonable person. I guess thats why the feelings and thought processes that I have been experiencing since Grey's death are so troubling. I feel like standing on the tallest mountain and screaming at the top of my lungs that "Life Sucks!!" Don't I sound reasonable?

I know that it had to happen eventually. I just wasn't ready I guess. All of our friends and family members have been so wonderful to us. Supportive, patient and loving. I needed that more that anything. But slowly, surely, some of them are starting to call less often, not check as frequently. Some never did. I guess that they didn't know what to say, how to feel, how to face us and our pain. That okay. I get it. Life goes on.

But not for me....

I'm frozen. I really thought that I was starting to deal with the grief, handle the pain, through things like this blog, purge myself of the sadness. I see now that I was just fooling myself. It's not going to be that easy. Not yet, maybe never.

Now I have to find a way to deal with a new feeling, envy. I envy everyone that I know, for they have a normal to go back too. For them time has presented that reality that is : LIFE GOES ON.

Great!! Pain, Grief, then guilt, and now envy! I'm running out of places to put all these emotions! I finally had to admit to myself that I'm blowing it! I just can't do this alone. I'm not being any support to Nicole and the kids. I'm too focused on myself and trying to find some way to balance it all.

Yea! Right! Like I would trust someone in my position to keep it together. I would be sending them to see a grief counselor.

So I have my answer. It's time to get some direction. A fresh perspective.

Do I really want to know if I'm as crazy as I think I am?

Oh Crap!

I Just Don't Know.....

2009-03-20T05:36:00.000-07:00

My perception of time is all whacked out. The days seem to drag, but when I think about Grey (always), it seems that time has flown. It has ONLY been 3 months, 1 week and 1 day..... It seems a lifetime since I held him in my arms.... The wily, crafty Old Specter is still screwing with me. As much as I hate sleep, towards the end of my week, I am looking for the time to crash and rest. Working isn't so much physically draining as it is emotionally and mentally. The Old Specter is merciless, when I don't want to sleep, he forces it upon me! When I am looking for every precious moment of sleep to keep me going for the weekend, He vanishes. Leaving me to toss and turn, enduring the moments of reflexion, like fingernails upon a chalkboard. Take this morning, I can sense the possibility of sleep, the allure of oblivion and the possibilities of dreams. But no! Just as I think that I will manage to close my eyes, POOF! The Old Specter is gone to the mists.

Our Endless Journey

2009-03-18T05:27:00.000-07:00

Sleep.

Anyone who really knows me would brace themselves before saying that particular word in my presence. It is definitely worse that any curse word. I have always had this endless struggle with the specter that is sleep. For me it is not just this natural part of life to be embraced. It is a foe, ruthless as they come that I must constantly match wits and strengths with day in and day out. I hate sleeping. I think it is the biggest waste of our most precious of possessions, time. The things that we humans miss while we are sleeping. Just being!

Existence. Loving, spending... time.. with our loved ones.

That time that we wasted sleeping is lost forever. Never to be regained. We humans are finite in nature. Our time here in this life is limited, some believe pre-ordained. It drives me nuts that the good Lord decided to then rob us of such a HUGE portion of that limited and most precious of gifts that he has bestowed to us. Everyday we are afflicted again, we are struck down and forced to surrender our most prized possession, time... Never to regain it back. It is gone. Forever.

Lately, I have been going over the last year frame by frame in the epic film of "William C. Morris, This is your Life!!" The seething anger that resides inside my heart coils, lurching back and forth hissing and spiting at me as I replay my time with my Grey Grey. My anger threatens to break free and engulf me as I think of all the times spent holding and snuggling with him when I dozed off to sleep instead of savoring every second! Breathing in his scent, feeling his soft hair and skin, the soft rhythm of his breathing. Believe ME! the irony of the whole thing is not lost to me. My favorite times with Grey was when he was snuggled in my arms, sleeping on my chest. But the perfect picture is shattered! EVERY TIME I dozed off! I lost my moments to the Old Specter. I can almost hear him mocking me!

The Specter continues his torture by dangling the lure of possible dream of my boy! He is a crafty adversary. My victories against him are fleeting at best, pointless at worst. He forces me to repay my victories steeply, robbing me of huge chunks of time after I have defied him for large periods of time. He is always there tempting me with the most precious of lures, dreams of Grey. I should know better, so far he has only paid up once. And only fleeting at that. All too brief.

Despair.

The Old Specter is ruthless. He has joined forces with the Ugly Troll that is my grief. They make a effective and dynamic duo. I very much feel like the worn out old punching bag in the gym, beaten and bruised, discolored and torn, patched with duct tape and stitches. The Old Specter is very crafty and sharp. He wears me down and just as I am forcing him to tap out, he tags in his partner, Grief. A ugly nasty troll that grabs me by my heart and turns me into that punching bag, holding me by my heart, squeezing ever tighter as I struggle to free myself, dodge, get away. Mockingly the Troll slaps me senseless with his free hand, until I become a raw, sobbing mess, unable to resist as the Old Specter tags back in. One..., Two...., Three.! He smothers me into submission and tags back in the Troll, who goes right back to squeezing my heart into submission.

Beaten and bruised, I find myself in the waking moments each day wondering, why fight on? Why continues this endless journey? There is no end in sight. I don't think that there is a end. I think that until the day I die, I will be tortured this way day in and day out. I just pray that when my journey ends, I will be worthy to join my boy, my Grey. That is my purpose, that is why I will fight the battle day in and day out. Why I will continued the battles, fight the war! Because in the end, if I can earn my place at the good Lord's table with my Grey, I will have won that war despite all of the lost battles.

Here's to fighting the good fight! Bring It ON!!

Ah! DA! Loves you Grey. I will WIN! We will be together someday! But you probably already know that, don't you?

Is It Magic? Or Just Memories?

2009-03-15T23:05:00.000-07:00

Home.

It is 1 am on Monday, March 16, 2009. It is 3 months and 4 days since our world was changed forever. No! Changed doesn't describe it. It was as if a huge hole punch was driven into my chest and one of the most important parts of my heart was ripped out in an instant. The hole that has been left behind, aching, empty, echoing with the possibilities to never be. His specter resides there, running, jumping, playing, reaching for me for hugs, the vastness ringing with the silence never to be broken by squeals of joy, pain, fear.

A vacuum, black void. Once filled with the bright light of joy and future, years to come. Now the entire universe is but a speck. The blackness is taking on a presence of it's own. When I'm busy or with others, it retreats into the vacuum, hiding from view and my consciousness. But it bursts forth to wrap me in it's smothering embrace in my moments of solitude and reflection. It's crushing weight endangering my ability to breathe. I find myself longing for the return of the blackness and crushing weight when it is gone.

In the first days after Grey's death in my arms, I would swear when I closed my eyes, that I could feel Grey there still, smell his hair. The feeling would return to me in my moments alone. And to my relief, returns to me still.

Is it magic that I can feel his head on my chest still? Magic that I feel his face pressed against my chest on the space my tattoo now resides? Magic or is it just memories?

Honestly, I don't care. I need it as my lungs need air.

GREY! AH! DA! LOVES YOU!!!

A Thing of Beauty!

2009-03-14T14:44:00.001-07:00

This is the updated video of "Who Knew?" As we fight to expand Texas' Newborn Screening, this video will be shown to all the committee members, both in the House and Senate, to help bring support for Greyson's Law, HB 1795 and SB 1720. Please feel free to post and pass this on.

At Last, Some Good News!

2009-03-14T09:25:00.000-07:00

During the day Thursday, My sister Adrienne and I were up at the capital all day. Meetings after meetings, talking to anyone that we can get to listen about our Bill. Answering questions, addressing the Representative's concerns, lobbying for support.

I feel good about the chances for passage of HB 1795. Keep up the pressure on the members of the committee, it will make a difference.

It was a long day. Then at the end of the day, good news!, Senator Carlos Uresti not only decided to support us, He filed Greyson's bill in the Senate also. This is great news. It doubles our chances of success. This is a fantastic, unexpected development. I had given up on gaining the Senator's support. I had been calling his office for days and not getting a response about his position. And then, BAM!! We find out that he not only supports our position, but wants to pass it in the Senate too.

Fantastic!! Thank you Senator Uresti.

Greyson's Law is now Senate Bill #1720 too.

Date Night

2009-03-14T05:37:00.000-07:00

I wouldn't call what I did yesterday sleep. I think it was more akin to a coma. I don't remember a thing. I had intended to sleep until about 1 pm and then get up and do a few things around the house, blog about the day at the capital. But my body revolted against any plans that involved awakening at a certain time and doing any chores. So I woke up at 10 min until 4 pm. Sleeping like that during the day is very disorienting. I had a moment of panic like I used to get when I was sleeping at nap time with Greyson. Had I overslept, did Greyson wake up sooner that me? Did he roll off my chest? Is he OK?......

Oh God! Not again......

It's like losing him all over again.....Tightness, the crushing weight of grief..... And something new. I have started experiencing a new sensation as I struggle against the waves of emotions.

GUILT?!

Are you kidding? The tightness and crushing sadness make sense to me, but guilt? I don't get it. But it's defiantly there, gnawing at my nerves. Really!? The sadness and pain at losing him is not enough? I have to have guilt now too? I have been struggling with doubt and that doubt is playing right into the guilt.

Am I sure that I didn't notice something that could have alerted us about his illness in time to save him?

Why wasn't I more aggressive with the doctors about what they called "laziness"?

I knew something was wrong with Grey, why did I doubt those feeling?

Why am I not sad more?

Why can I function? Why do I not hurt more? Did I not love him as much as I thought?

These questions threaten my sanity. Make me feel as though I might snap at any moment.

Oh! Crap! Nicole will be home soon! We are supposed to go out on a date night. Struggling to regain control of myself and shelter her from my pain and doubt. Hockey. We are going to the Rampage game. No sad thoughts allowed for the whole date. YEA RIGHT! Like that is going to happen.

Still, spending good time with Nicole is something I desperately need. I miss her. I know that she is hurting and trying to hold things together too.

Here's to Date Night!

Tired.....

2009-03-13T06:30:00.000-07:00

I just don't know. You know, I will be the first to admit that for me, blogging is about finding a way to let go of poison. I do worry sometimes that I will, without intentions, cause someone else pain. It has, without my realizing it, been days since I have blogged. I ask myself why? So many of the things that I do just don't make any logical sense.

This week has been a hurricane of activity.

Monday, the SA Living interview.
Tuesday, what happened to Tuesday?
Wednesday, dentist appointment and visiting a friend.
Thursday, hustling to each of the Committee members offices for HB 1795 to answer any questions, lobby for support and address concerns. A blur!!

And yes I have still been working my normal work schedule! In fact I just got home from working the night shift. Tired.
So Tired...... I have much to say about yesterday at the Capitol, but I am literally falling asleep typing this....
......Continue later.....

Wow! The Places We Wind Up!

2009-03-09T23:42:00.000-07:00

Wow!

I tell you what, this time last year I was in the euphoric world of a Dad with a new baby at home. Experiencing first smiles and musical cooing and gurgling. A blur of diaper changes and baths, sleepless nights and days blending together. I was the proudest of all Dad's! 4 boys! I was the MAN!!

Through the fog of tears stinging my eyes, I watched the lost videos of Grey at 3 months old. We had forgotten about the footage. What a blessing that Nicole found it. My biggest concern back then was how to satisfy the attention needs of 4 rambunctious boys. What I wouldn't give to have that be my biggest concern now!

Sunday was a surreal day. I was working and I was out with my client and his wife and daughter while the ladies shopped for clothes. He has become a dear friend and confidant. He too knows the pain that only a father of a lost son can feel. Anyway, I was off getting him some water from the water fountain and I had one of those moments that you never think will happen to you. I have always been fascinated by babies. Even before fatherhood I loved to play with friends kids and watch the wonder of life in their eyes. I met a kind man and his 14 month old son. A beautiful boy who wasn't sure he was enjoying the whole, shopping thing. Naturally I was drawn to them. Babies have a way of mesmerizing me lately, especially babies close to what Grey's age would be. I spoke to them and continued to the water fountains. As I made my way back, father and son were rocking in a rocker in the outdoor display. So naturally I stopped and talked to them.

Would you believe that the man recognized me from the news piece done on Greyson's death months ago? What are the chances that on the eve of our doing the SA Living Show to update our progress, I would have a chance encounter with this man and his young son? What message am I to take from this? This is the first time that I have been recognised by a stranger. I want to thank this kind soul for his words of kindness and sympathy. Thank you for reminding me of Nicole's and my goal to protect babies from our Grey's fate. I am reminded of Pastor Mark's words, "Love Him Hard!"

Wow! The Places We Wind Up!

I Wonder

2009-03-07T19:12:00.000-08:00

I tried not too....

No matter how hard I tried, the thoughts kept squeezing thru every wall I placed in front of them. It's not that they were completely unpleasant, but painful all the same.

How old would he be now?

What would he be doing?

What would he have liked most about today?

Which game would be his favorite?

Would he play well with other kids his age?

Would he have thrown a fit when it was time to leave?

Would he be scared of strangers?

How coordinated would he be by now?

Would he be walking yet?

Today was a nice day. Today was my sweet little niece Natalie's birthday. My sister and her husband had a mermaid birthday party for her a one of those Playscapes places. There were kids of all ages everywhere! Running, playing, having meltdowns, squealing in delight. It was the best kind of ciaos. I really love kids. I love being around them, watching them explore the world, test themselves. Before I knew what was happening, I was staring at a new (3 week old) baby. I just couldn't take my eyes off of him. I am positive that I totally freaked that Mom out. Some weirdo staring at her baby, looking like God knows what? Was my face screwed up in pain? I don't think I cried, did I?

After watching the kids for awhile, I realized that I was playing a torturous game. One that I, in no way could win. I was trying to picture in my mind what Greyson would be doing at this party if he had never been sick, never died.

What would he be doing?
What would he have liked most about today?
Which game would be his favorite?
Would he play well with other kids his age?
Would he have thrown a fit when it was time to leave?
Would he be scared of strangers?
How coordinated would he be by now?
Would he be walking yet?

My eyes found Nicole across the room. She was watching the newborn baby as though she was mesmerized by him. I felt a twinge of the same old tightness in my chest, I hate to see Nicole hurting. I made my way over to where she was, and just laid my hand on her back. I could feel the quivering tremors that always proceed tears. But her face was so composed, still. I asked her if she was alright and she just whispered, "hard to be here, you know?" The tightness in my chest became a spasm. I know.....

Later in the party I was sitting with my Dad talking. Nicole made her way over to me and sat beside me. After a few quite moments, She leaned over and asked, " I wonder what Grey would be like."

Gods!. At times it is scary how alike Nicole and I think.

I wonder..........???

I Shoulda Known Better....

2009-03-06T22:00:00.000-08:00

I thought it would be nice. I thought I would be able to recapture a moment or two, or at least the memory of a feeling once felt. It was a cool idea after all.

I shoulda known better....

Just before Greyson was born, Nicole and I got into this very short lived series called "Dead Like Me", about a rag tag group of Grim Reapers. There were only 3 seasons and then it was cancelled. I have fond memories of lying in our entertainment room watching the episodes while Nicole and the boys, except for Riley were at school. Those were such happy times. Riley and I would talk at least once a day about how cool it was going to be to have a new little boy in the house and how excited Riley was about being a big brother.

Happy Memories.....

The other night, Nicole found a full length DVD movie done based on the series, most of the same cast and everything. So we bought it. Tonight, I was playing computer games with Seth and had finished building Riley's Lego Clone Wars Tank. Seth was drifting off to sleep and Riley already was. Nicole called me away & suggested that we watch the DVD. I had such a good time giving attention to the boys I though that quality time with Nicole would be cherry on the pie. Spending the time together was nice, but the movie just kept taking me back to the before Grey times, the before Grey was sick times, the taking naps with Grey on my chest times.

My old familiar, snug, tight T- shirt very confining and tight. Tightness and aching, feeling as though the next deep breath would started the tremors that would rip me apart. The aching desire to make a deal, any deal for even another moment with Greyson. To remember the way that he smelled, felt, snuggled...

Yes, I shoulda known better......

Dear Friends..... Taking Time for a Deep Breath

2009-03-05T05:34:00.000-08:00

Wednesday was a blur. It started early, at 6:30 Am, helping Nicole and the boys get the day started. Except that I was taking Seth in the Lab for blood work to check how he's doing levels wise on the PKU front. Seth and I had a great morning. Good quality father and son time, doing just, stuff! After Seth had eaten his breakfast I took him and dropped him off at school. It was about 8:30 Am. All in all not to bad a morning.

Ever since the benefit for Greyson, I have been getting great joy out of reconnecting with a favorite teacher from my high school days. He surprised me by attending. Turns out that he is one of our closest friends Uncle and he made the connections of who I was. I cannot explained how touched I was too look up from accepting someones sympathy to see a well remembered smile and a long missed face. To not see someone who you enjoyed spending time with for 22 years and to have them all of a sudden appear to provide support to you in a time of great sorrow and difficulty is overwhelming. I was deeply touched.
It was great fun and relief to sit and just talk, catch up and laugh..... I can still laugh. Not the polite make others feel better about how I'm doing, but the deep, side splitting laugh. I haven't felt so good in so long. I will admit that it was an effort to not feel guilty about feeling so good though. Guilt was tickling the back of my neck the whole time. Telling stories about Grey helped keep it at bay.

As I drove away after a wonderful visit, I found myself thinking about how blessed as a family we have been. We have so many wonderful, thoughtful people checking on us, thinking about and praying for us. I wish that I could do or say more to thank you. Each and everyone of you have touched my heart deeply.
I then did something that I haven't done in far too long, I got my wife flowers and had lunch. After lunch I went to the local radio station to try and arrange an on air interview and the local newspaper to raise interest in a story about H.B 1795 (Greyson's Law). It's looking good and I will keep you apprised of any development.
Then at 5:30 pm I was a baseball practice with Seth. Not a bad day at all.

Grey Grey, I did it! I let myself have some fun without that tight- fitting T-shirt bothering me too much. I hope I made you proud of me. I miss you so much Little Man.

I Love You,
Ah! Da!

Cash..... Beautiful Future

2009-03-03T15:37:00.000-08:00

Sweet, sweet pain..... beautiful possibilities lost forever.....
Sometimes we human are a bit sadistic. That quality that causes a traffic jam because everyone has to see the drama. We are like that with things that cause us pain.... Nicole has a dear friend that she works with,... she has the most beautiful little baby boy..... Cash... He has the most amazing eyes and a great smile. He is so precious!! I really enjoy seeing him when he is up at the school with his Mom... But I dread seeing him too....

When I'm around Cash, the amazing beauty that is life floods into me. I thank God for babies and that Cash is happy and healthy. His smile lights the sputtering pilot light that is my joy and happiness, his awkward unsteady gait reminding me of all the possibilities of a young, fresh life. All the tears, smiles, scraps, boo-boos, laughs, squeals of delight and fear, all the wonderful treasures of having a small infant in your life. For a brief moment, very brief, I remember what joy I felt in being Grey's Dad. All the possibilities, the future, the sweet, long future. I'm like a drug addict, I want to breath the newness, consume the joy for little Cash. No matter what it does to me. I pay for it dearly. Very dearly.

Some people would question my sanity wanting to subject myself to that pain willingly. I can't help it. Believe me, it is not easy, it costs me dearly for those few moments with Cash. The usual tightness in my chest become a vice, threatening my ability to breath, my heart's capability to beat. My breath is slowly squeezed out of me and I lack the strength to inhale the next breath. The dark, ugly spot in my heart aches and throbs for Nicole and I's loss. The blackness threatening to consume me completely. The crushing weight of what we have had to endure and accept driving me to despair. The lost things, his smile, his eyes, his kisses, his laugh, his happy spirit despite his limits physically, the future things never experienced. The first step, hugs, wrestling together, riding a bike, swimming, the list goes on and on.

Thanks Cash, for showing me that my heart can still function, despite the pain.

TEENAGERS!!

2009-03-03T05:26:00.000-08:00

I'm tired. But I'm fighting hard. I can feel the crushing weight of my grief closing in on me. I don't want to succumb to it again today. Yesterday I managed to prop the grief up by keeping busy and pushing it back with shear stubbornness. But this morning I'm tired.

Nicole is stressing bad. It is TAKs time, you teachers out there know what that means. With everything, Nicole isn't bearing up under the pressure very well this time. She has always been able to shrug it off in past years. Sometimes I worry about her. But I'm sure she worries about me too.

You Know, of all the boys, Luke's personality is the most like me. Lord knows I love him very much, but I will be honest, I just don't know if he is going to survive to see 14 years old. Arrgghh! I would really like to know when I stopped being the greatest Dad in the world, to being the worlds dumbest person. I told him last night to get into bed early because he was taking a TAKS writing test today. When I got home, the first thing that I found was everyone getting dressed except for Luke. He was still sleeping. Nicole informed me that he was still awake and wandering around the house at 11 pm last night. I lost it! But in typical teenage logic, I am wrong and mistreating him, being cruel and unfair. I love him dearly, I swear though, I promised myself that when I was a Dad I would give my children all the self confidence and individuality that I lack as a young man. It is brutal! My boys speak up and talk back sometimes in ways that just knock the wind out of me. I have to stop and catch my breath before I overreact, remember that I want to nurture that self confidence to speak up for themselves, not squash them or make them timid. But they sometimes shock me. I would never have had the guts to speak to my father like they do to me sometimes. The balancing act is instilling a respect for others into that self confidence. Sometimes, like this morning, I really wonder if I'm creating monsters. Freaks that won't be able to recognize when to hold their tongues and think before they speak. I hope Luke's difficulty with this concept is just his age and not a side effect of my parenting choices. Man! I'm getting OLD!

It's Baseball Season.....

2009-03-01T11:00:00.000-08:00

I tell you what, Nicole is the best Mom ever! Here it is Sunday and instead of sitting around on her butt, Nicole is loading up not just Seth, but Seth and Riley for a whole afternoon of baseball practice. Seth is in the second year of the PeeWee level and Riley is in the Coach-pitch level. It's great! They are so excited. Seth's team is the Cardinals and he has had two practices so far and he is really looking forward to this season. That is good. We as a family really need for this to be a good family distraction. Last season was such a disappointment. Seth didn't like his coach, didn't get to play catcher all season and just didn't enjoy himself at all. Which had a huge impact on our family dynamic. Nicole hated going to Seth's game because of the situation with the coach and also Grey was having feeding problems (Milk allergy we thought) so she wanted to stay at home with Grey. I resented this, because I missed the family time and I had to do all the games by myself. (Poor me! Don't you feel sorry for me?)

Riley is on the Astros and today is his first practice. Seth has practice again today after Riley's, so it is going to be a long afternoon for them all. What a Mom! And she is also bearing up under the added strain that some of the people at Riley's practice might not have heard about Grey's death. Dealing with peoples shock and amazement about Grey's is really hard, even for me.

Thank you, Nicole. Thank you for always putting the boys first. I Love you so much and you make me proud to be your husband everyday.

Have fun Boys! Do great at practice!

Amazing, Isn't It?

2009-02-28T18:34:00.000-08:00

I sat down at my computer this afternoon and did my emails to the members of the subcommittee for Health and Human services. While I was writing and pasting the emails to each of the members, It hit me! Grey still hasn't been gone but 2 Months, 2 weeks, 2 days and we are already moving a House Bill through the Texas Legislature.

Now granted, I am very pleased and thankful that we have met with the success that we have so far, but I am careful not to forget that this is only a small step toward our ultimate goal. After all this bill is only going to put the Texas Newborn Screening program where it should have been after another H.B. 790 that was passed in the 2005 secession. Unfortunately the framers of that bill left crippling loop-holes in the language that allowed lawmakers to delay en action and ultimately kill it's intent. Nicole and I have been insistent that the language in Grey's Bill # 1795 be very specific and clear. Not leaving any question as to when and how the expansion of Newborn Screening will happen.

So the good news is that we will be adding all of the screenable diseases to the panel except for Cystic Fibrosis, Galactose epimerase and Galactokinase. The reason that these three diseases have to be left out right now is, literally cost. They are screened for using other more expense, labor intensive methods than the 20 that Grey's bill adds. This is unfortunate, but after weighing the options of being able to bring Texas up from 27 tested diseases to 47. We and the sponsors of the bill decided that these exceptions could be tolerated. Especially since we have made a provision for creation of an Advisory Council to advise and act upon any future recommendations of the ACMG (American College of Medical Genetics. So we can later add those 3 diseases and hopefully Krabbes and 2 other Lysosomal Storage Disorders that the ACMG is expected to recommend for addition to the panel at the end of March. (They are currently nominated).

So amazing isn't it? Nicole and I set out to make sure that no other family has to suffer the loss of their baby from Krabbes Disease and SURPRISE! Grey's Gift! We are making it better of countless more families for 20 other diseases, some of which are more common that Krabbes. Many of them are controlled or treated with simple diet modification!

As usual I am completely humbled by the fact that Grey's short life and tragic death are going to have the far reaching affects of the potential health of countless infants.

How, how can I justify my petty, selfish grief and self pity in the face of such ordained purpose?

FIRST TEXAS AND THEN A NATIONAL UNIVERSAL NEWBORN SCREENING PROGRAM!!
(nothing less!!)

I Love You Grey Grey!

Ah! Da!

Riley, My Riley!

2009-02-28T08:16:00.000-08:00

I just got off the phone with Nicole. You Know its the weekend again and I'm off working again. This time of day on Saturdays are good. I have finished all of my morning routine for my client and have a few minutes to myself. I braced myself for the waves of memories and emotions, and with a great feeling of guilt, realized that the memories coming into focus are happy, bright, and warm.

I don't understand it, but I am not going to look a gift horse in the mouth. That snug, familiar shirt that has been my second skin so often lately is somewhat loose and not as heavy. It must have been the blissful, happy excitement that I was basking in last night after we went to the sports & outdoor store to get the boys (Seth & Riley) a few items that they needed for Little League. There is nothing as wonderful for a father as soiling your sons for no good reason. Each of the boys, even Luke, got to get something that they wanted, even though they really didn't need it.

Riley in particular is such a sweet and bright soul, I just can't help but smile. The total, pure joy in his voice when I said yes to his request was infective. I'm smiling now as I'm thinking about it. He was still as happy as can be in the background while I was talking to Nicole.

Yep! Thank God for Riley!

Grey Grey,

Yesterday Mommy and I took your brothers to the Academy Store for Little League shoes. And of course they just had to get other things too. You would have been laughing at Riley. He was so excited and trying on all the helmets and trying to convince Daddy to buy him a new bat too! Even though he doesn't need one. Your bothers miss you so much Little Man!

We Love You!

Ah! Da!

Round and Round We go.....

2009-02-27T05:25:00.001-08:00

I really thought that I had turned a corner after my dream about Grey.... After last night..... I'll tell you, I was wrong. It was a bad night. Every time that I stopped moving or occupying my mind, pictures of Grey's last day of life flashed into focus. My best friend, my worn comfy shirt settling in snug as ever, squeezing my heart and threatening my ability to keep moving. I feel like a fugitive on the sly, trying not to go back to the slammer. If I stop to breathe, the assault team that is my pain will slam down the full weight of my grief squarely onto my shoulders, it threatening to crush me.

I have always tried to be a patient person with others, not objects, but other people certainly. Especially family. I must accept the truth, I am failing that goal completely now days. I find that I am a extremely snappy person these days. Very slow to react to the coiling vipers that are my temper, to stop them before they lunge forward. To my great shame and horror my Darling Wife and children are bearing the brunt of this, my short-coming.

Will I ever regain my ability to be understanding and patient with others?

Will I ever be able to take a deep breath without pain or fear that I will fall apart?

Will I ever remember, or experience joy and happiness again?

I wonder.......

A Call to Arms!! House Bill 1795

2009-02-26T05:43:00.000-08:00

Alert!! Red Alert!! (Notice the sly Star Trek reference....Heh, Heh!) We now have a House Bill number! House Bill 1795 to be Greyson's Law if passed, was filed yesterday in Austin. My humble thanks to Rep. Paula Pierson and her staff (especially Maureen) and Rep. Doug Miller and his staff for sponsoring this bill.

What we need now is all of you! We need to spread the word! Write, write to the members of the committee that will hear the bill. The list of those members can be found at:

http://www.house.state.tx.us/committees/list81/034.htm

Please remember to include the House Bill # 1795

To see the actual bill you can go to:

http://www.legis.state.tx.us/BillLookup/History.aspx?LegSess=81R&Bill=HB1795

Please pass this information on to anyone and everyone that you can think of!! I want the members to think it is a tidal wave of mail!

Grey Grey,

It's looking good Little Man! Mommy and I are going to do everything we can to make sure that no other beautiful babies go untested for every disease possible. I can't stand to think of another family having to loose a treasure like you.

Yesterday I took big brother Seth to practice. There were babies about your age everywhere. I was so jealous and sad, Grey. Jealous that those daddy's still have their babies and sad that I don't. I miss you Grey!

I Love you Little Man!

Ah! Da!

Reflections......

2009-02-24T21:32:00.000-08:00

I've been spending a lot of time thinking.

I know! That's dangerous! Ha! Ha! "Laugh it up Fuzz - Ball!" (Han Solo in Star Wars)

Seriously though. I have been thinking a lot today. My thoughts are about two things in particular.

1. Did I really hear what I thought I heard early Monday morning? Was it real?

2. What was my dream? Was it my hyperactive mind trying to make sense of my nervous fear of what was going to happen at the dentist's?

How fitting that my first dream of my beautiful Greyson is on a night when my mind was so distracted by my fears of the root canal to come that I almost missed the dream altogether? Is that the key? Have I been so focused on getting some sign that he is okay that I haven't been able to see or hear what is right in front of me? How ironic is that? I would schedule a root canal everyday for the rest of my life if I got to dream of him the night before.

Was it my overactive imagination that manufactured the voice and the dream too? Was I so desperate to have some piece of him to be alive that I made these things up? I wonder.

I have spent countless hours thinking about what heaven must be like. Which in itself is weird, because I've never given it much thought. Not even when my favorite Granddaddy died, did I wonder much. Heaven was always, so...... far away. I have my whole life ahead of me, after all. Now I spend my time thinking of nothing much else. I don't read anymore, except on the Internet. And since the XBox came back from getting repaired, I've played twice. Just doesn't hold the same allure as it used too. But my thoughts take me back to wondering about heaven all the time now. What is it like? What is he doing? Can he see us? Can he hear us? How can he be happy without us? How can he be happy without ME?

I settled on a imagined solution. You know, everyone that I have expressed my disbelief that Grey can be happy in heaven without us has responded that, "He's with our Father, that's how!" Sorry, that just doesn't work for me. So my fragile mind has settled on this possible solution.

Heaven is another plane of existence, I think that we can all agree. Right? So I think that the solution for how he can be happy is that there is a see - thru wall between him and us, with this wonderful automatic door. Any time that he wants, Whish! Thru the door! Like on Star Trek! And instantly he's with us, able to touch us, hear us and smell us. We don't know that he's there because we humans just don't have the ability to process, no no, ability to sense and notice those things. This works nicely into the whole Physics thing. They are wired differently and can pick up on those "frequencies".

Was my hearing Grey say Ah! Da! evidence of this fact. Was he able to somehow break thru the barrier because I was focused on other things, scared about other things? Was he trying to reassure me that he's okay and make me feel better because he sensed my fear and nervous energy? Was my dream a further manifestation of that? Was Grey trying to make me feel better because he could feel my concern? Did my lack of focus on him weaken the barrier enough to make it possible for him to get thru?

Boy, DO I sound nuts or what?

Am I so desperate to make up this thing?

I wonder?

Grey Grey,

Daddy has had you on his mind so much lately. I miss you more everyday. If that was you Little Man, thank you! I will try to be more receptive in the future. Kisses to you Grey!

Your Daddy forever,

Ah! Da!

Phewwww!

2009-02-24T11:50:00.000-08:00

Today I feel human.

Yesterday was a blur. I didn't sleep well for one thing, but I also had my root canal done. I had some medicine that I was to take in the car prior to arrival at the dentist. Halicon, I think. Anyway I took them halfway to New Braunsfels to drop off the boys at school and I remember leaving Seth and Riley at their school & then..... NOTHING!

I barely remember being at my personal dentist's office for the crown later, But even that is very fuzzy. I remember the dentist asking me to bite down on the mold & then him crying out in pain and thumping me on the shoulder to let go. I BIT HIM! HA! I finally got some pay pack! Problem is he is the best dentist I've ever been to and the last one I wanted to bite.

He called later last night after I had finally come out of my haze to check on me. I told him how sorry I was about biting him and He laughed. He remarked how funny and amazing the human mind is, He had told me to bite down, but like 4 minutes before I bit him. It took that long for his instructions to make it through the sedative. WOW! Was I out of it!

On another note, it finally HAPPENED!!

I have been waiting so long... Now I'm sorry that its over.... Kind of the way that you look forward to a hot date or a really good steak. Your sorry that you didn't appreciate it more, savor the moment more completely.

I finally went to bed at about 4 Am. I was drooping while I was sitting at the computer. I was still having occasional chills from my experience a few minutes before, still trying to convince myself that it really happened.

Nicole asked me after she woke up if I had been dreaming about Grey. She told me that I woke her up at around 5 Am crying. She couldn't wake me.

This is what I remember. It seemed so real.

I found myself at the door to Grey's room. It was still dark outside, but somehow it was bright under the door. I heard rustling in Grey's room. I was angry, because our cat Blaze has a habit of climbing into Grey's bed. I pushed open the door and Grey was bouncing up and down at the side of his bed reaching for me, that radiant smile and bright eye's glowing. He was moving his mouth and making kisses, but there was no sound.

I reached to pick him up.....

Then he was gone. The room was dark. I was alone.

"I Love You Grey Grey." I whispered.

I don't remember anything else until Nicole woke me up to get ready.

Sleepless Again.....

2009-02-23T01:28:00.000-08:00

Well. Here I am again. I got home after work at about 12:45 am. First I unloaded my car and took a shower, then I went about finishing my nursing notes from today's shift and getting all of the ones for this pay period together and packaged for Fedex. I was watching a old movie while I was farting around, not really accomplishing a whole lot. After all, I am VERY nervous and scared about my Root Canal tomorrow!

I had finally finished my work and went to fax my time sheets into the office before sealing the Fedex envelope AND THEN!!!!

All the hairs on the back of my neck stood up on end and chills shot up and down my spine!

Ah! Da!

I've been working too much.

I'm tired and my subconsciousness is making stuff up!

Greyson was learning how to talk just before he started to become symptomatic. He was saying "Da Da" and shaking his head "No No", he would even say "Mama" when Nicole wasn't around to hear.

Speaking was one of the first things that Grey lost after the initial onset of symptoms. He still shook his head "No No" but he only very rarely spoke and then only one word. "Da Da". And it only came out "Ah! Da!".

Each and every time that he said this is seared into my memory. The most memorial was the night before our last appointment with his Neurologist. I was getting ready for work that night and telling Nicole and the boys goodnight as I walked out the door. Grey was very upset and fighting going to sleep in Nicole's arms. He wanted me. He always wanted me.

As I bent down to kiss him goodnight, he blurted out Ah! Da! I think the force with which he said it surprised him as much as it did me, because his face came alive with this huge smile. I called into work and cancelled right then. He drifted off to sleep on my chest a hour or so later.

Did I really hear him?

I know it was his voice. I know it.....

I'm nuts!

Was Grey trying to tell me that he's okay and misses me too?

I wonder.......

Grey Grey,

Ah! Da! loves you too!!!

Thanks! I'm Okay, I Promise.....

2009-02-22T16:52:00.001-08:00

I was on my way to my parents house after getting off of work at 12 midnight last night. Nicole called me, just to check on me. We chit - chatted for couple of minutes, then she told me that some of you that follow my blog are getting quite worried about the Billman.

She said that my blogs of late have been a bit on the, Hmmmm, dark side? I think that was the word she used. Yep! I sure of it. She mentioned that some our friends had mentioned that they are concerned about how sad I sound in many of my blogs and I was in need of someone to talk to. "WELL!", I snapped, "Then I just won't blog anymore!"

Poor Nicole.

She is the sun in our relationship. Just in case some of you haven't yet come to that realization. She is the one that always sees the good. The joy. The bright sunlight!

So.

Today in the slow moments at work, I reread some of my blogs. And everyone is right. If I were reading that and I was someone who cared about me, I would be FREAKING!

Therefore, I think that I need to take a few minutes to reassure everyone including me, that I'm doing okay. Not great, but okay.

I will admit to feeling very much like the statue of Atlas, straining to bear up under the strain of my grief about Grey's death. I have been affected much more deeply than I imagined. That is the reason that I even started to blog in the first place. I hadn't started blogging. I didn't think that sharing my feelings was a good idea. Nicole started her blog Grey's Gift the week before we lost Grey, and it really seemed to be helping her to deal with all of the waves of emotions. I also, was benefiting from her blog. It helped me to understand what she was thinking and feeling. That was ultimately what made me decide to start a blog too.

I work a lot of nights and weekends in my job. This means that not only am I away from Nicole and the boys a lot when they have down time, but that I also have a lot of time on my hands at night when my clients are sleeping. Time that is quite, lonely, and difficult.

These times are when I can't occupy my mind well. These are the times that Grey's memory and the grief of his death overwhelm me. If you look at the times that I am able to blog you will see that I have turned to this venue to console myself and work my way through my feelings. Many of my blogs are at the 1,2,3,4 o'clock in the morning or first thing after I have gotten home after a long shift and can't sleep. During the down times on my long 16 and 17 hour shifts on the weekends, when I miss Nicole, the boys, and most of all Grey.

So please My Dearest Friends and Family, don't worry too much about me.

I'm okay, I promise......

I'm Scared!!

2009-02-21T19:49:00.000-08:00

I find that I am at my easiest and calmest when I am alone. No one around. Alone with my fears and doubts, permitted to wade into the murky, brackish water of my grief. I hold my breath as the ripples of my anger, anguish, fear, sorrow and heartache lap against my body. Tightness gripping my heart and squeezing ever tighter as more and more images of our time with our Grey shuffle in and out of focus.

I feel like the statue of Atlas, weighed down by the magnitude of my grief and pain. the more that I strain to remain upright, the more heavy and overwhelming my grief becomes. I can feel myself succumbing to the power of it over my heart and soul, I can feel a blackness, a void of numbness chasing me and gaining.....

RUN! My mind is screaming! Don't let IT WIN!

I'm scared.

I'm not dreaming at all anymore. It may just be the Pain pills that the dentist gave me for my tooth.... What if it isn't?

I have always been the Moon in our relationship; Nicole and I. Always about the bad, always about what can go wrong.

I'm Scared!

Despair......

2009-02-21T00:47:00.001-08:00

It has been days since I wrote.

Things have been moving fast & furious. Meetings with people, Hunter's Hope making a PSA, arranging to have it aired, changes to their website in support of our movements toward a vote to expand Texas Newborn Screening........ It has been a very productive and exciting week.

I don't get it....

I don't understand.....

I have been clumping around with an emotional chip on my shoulder, just daring all to even look at me and disturb its precarious equilibrium. Any look of concern, any look of sympathy, or understanding threatening it's balancing act. Poor Nicole.....

When I think of some of my behavior this past week, my heart trembles in shame.

When did I become so ruled by my emotions?
When did I become annoyed by Nicole needing me to be calm and supporting?
When did I start being unable to be patient with my boys when they are sick and whining?

I'm scared....

I should be rejoicing that we are have so much success with all that we have chosen to accomplish, but I'm not.....

Despair.... I feel lost and broken....

What will I feel next? Will I ever be the husband that Nicole deserves and needs? Will my kids be alright?

Despair......

I have a new hat to go with my old worn, comfortable T- shirt.....

Despair......

A Clean Slate

2009-02-18T17:38:00.000-08:00

It is very sad the things that we as humans let slide. We humans are just incapable of keeping all things up and running. We have to focus on a very narrow view at times. I don't know what makes us unable to keep a broad view of the world, but we don't and that is why we miss things and have scramble to fix what we screwed up. I have been guilty of this a lot lately. I wish it wasn't true, but it is.

I should concentrate on being a greater emotional support for my wife.

I should be more patient with the boys.

I should be able to move past my grief and pain over Grey's death.

One of the unfortunate side effects from Grey's illness was that I took my eye off the ball with Seth and his PKU diet. Seth has done a masterful job as a 9 year-old of stepping up and keeping to his diet. But we all slipped up. He started having trouble before Greyson was born with his Medical Food. It was upsetting his stomach and causing him to vomit uncontrollably. I was in the process of getting him into a new clinic and getting a second opinion on what was causing this when Nicole was put onto bed rest for premature labor symptoms. With is added stress, Seth's new clinic appointment got postponed. Then Grey was born and we were consumed with taking care of a newborn, then Grey was sick and we were scrambling to get him diagnosed. Then Grey died.

Through all of this, Seth was a CHAMP! He continued to stick to his diet and not succumb to the temptations of forbidden foods. When we started refocusing on Seth's need for new Medical Food. Despite the challenges, Seth's Phe level was only 3 mg above the acceptable range!! Hoorah Seth!!

Today we started a new chapter. We have new samples of Medical Food to try and the possibility of a new Enzyme in capsule form to help.

I am striving to start a Clean Slate.

I will strive to become the supportive husband that Nicole needs.

Grey Grey,

I Love You my sweet boy. Help me to be strong for your Mommy. Help me to stop being sad and in pain all the time. Remind me of the joy and happiness that you brought to our lives. Help me to stop being so selfish and to see beyond myself. I am ashamed to admit that I am letting everyone down.

Help me to be strong Little Man. I feel so weak.

I Love You!

Ah! Da!

The Start of the 12 th Year!

2009-02-17T16:22:00.000-08:00

Yesterday was the best day I've had since Grey died. I really didn't know if we would be able to move past our sadness and give into the joy of the occasion. It didn't help that I had pulled the typical thoughtless husband routine and not gotten anything to give Nicole.

Nicole had planned the whole day. We went to eat pizza at Gatti's Pizza and then the movies to see "Pink Panther 2". Stupid movie, but spending time with the boys was awesome. I think that was the difference that made the day. It reminded us of what is most important, our family.

Nicole,

I never thought that I could love you more than that day when I first kissed you and knew that my heart was yours. Many other couples would find dealing with the loss of a child to have shaken the very foundation of their relationship. I haven't had even one thought of doubt or concern about our relationship. Knowing that I have you to be there to hold my hand and wipe my tears, makes it possible to face everyday. It gives me comfort to know that you get it. You understand completely as no one else ever could. I Love You.

Please never doubt that I have your back. I will be there for you when you just don't feel that you can bear to take one more breath, to hold your hand and wipe your tears. We are in this together for all time. I remember that Pastor Mark looked at us and said "you know that statics aren't on your side. Most marriages don't survive a year after the death of a child."

I actually chuckled! And I told him, since when has our relationship ever allowed for the statistics? When have we ever listened to any of the Nay Sayers? NEVER!

You will have to accept that I will stick by you forever!

I Love You! You will always be the Sun to my Moon.

Your Loving Husband,

Bill

Settling back into Routine.....

2009-02-15T19:36:00.000-08:00

I told myself that I needed a break from blogging today. I told myself that all of this "getting" in touch with my feelings has been making me sound like a big "Whinny Baby". So I set out to not blog today. I almost made it the whole day too! But here I am, bored with the computer game that I was playing and having one of those, "nothing to do" moments at work. My client is watching the NBA Allstar game, and doesn't like me hovering over him when he's watching TV. So I played a game and then went to read Nicole's blog and Misti's also.

You know, the more that I think about how much our lives have changed since we lost Grey, the more that I realize that it isn't changing that much after all. Tomorrow is our (Nicole & I) 12 th wedding anniversary. Do you think that I have made sure that I have something special planned? HA! HA! I suck bad! I haven't done a thing! Nicole really is going to deserve sainthood for putting up with me. It's not that I love her any less, quite the opposite, I love her more now than the day I married her.

Not only did I work a full 40 hours this weekend, but I work our anniversary night too! So her special day will be spent with 3 boys, (No one to watch the kids!) And she won't be treated like the Queen that she is. I really do not deserve her at all! I almost never remember to go that tiny little bit extra that would make the world perfect for Nicole. I do love you Nicole!

And since we have no choice in the fact that we have to endure the death of our boy..... I am relieved that I am going though this with you Nicole! Your strength is awe inspiring to me and makes me to want to do a better job being there for you. I will be better, more positive, and more understanding for you when you are overcome by Grey's death. I will be less selfish and more supportive my Darling Nicole. I Love You!!

Grey Grey,

Mommy and I promise that we are never going to forget you. Please continue making things better for Mommy and your brothers and help them to be happy for those brief moments that the forget that you are gone. Those moments are so few and fleeting.

Play Hard Little Man,

Love

Ah! Da!

I Did It!

2009-02-14T13:46:00.000-08:00

Yesterday was a blur.

It started pretty rough. I didn't feel well when I got up. My broken tooth had gotten worse our good friend who works for our dentist got a message to me that he wanted me to come into the office. But I had been promising Riley that I would go to his class valentine party. So I went to HEB and got cupcakes & went to the party. It was great! Riley does so well at school! I am so proud of him.

After the party I went into the dentist and I wished I hadn't when they informed my that they had to numb me up and open the abscess in my broken tooth. That type of thing is exactly why I hate the dentist. It was Awful!! They had to remove all of the roots and nerves from the tooth because of the inflammation and infection. Even with the numbing, it HURT! I nearly amputated the dentists fingers! I was instructed to take the rest of the day easy. But I had other plans!

Ever since Grey died, I have wanted a memorial tattoo on my chest, where he loved to lay his head and listen to my heart. I have blogged about it before. I have been researching and planning my tattoo design for about a month. I had finally settled on the artist and he assured me that he understood my thoughts and what I wished. So there was no way that I was going miss the appointment that I had yesterday. And I am so glad I didn't.

The design that Christopher came up with was awesome! So much bigger than I had envisioned when he and I talked price. I won't lie! It was brutal! It took almost 3 hrs and the area that I had chosen was much more sensitive than I realized.

The last few days and the pain and sorrow that we as a family experienced kept flipping into and out of focus as I laid enduring the waves of varying intensity and duration of pain. The Monday morning when we noticed a change in Grey; the last time we were able to get him to eat. The Erie, heartbreaking (neuro-cry) that started late on Monday. the feelings of utter helplessness and despair that I felt when I couldn't sooth Grey's fussiness. The anguish and pain in Nicole's eyes, the pain in Seth's voice when he asked why Grey was going to die.....

Grey's beautiful smile and deep, dark pools, that were his eyes. His laugh, kisses and joy of being with us....

I will see all of these things and many, many more when I look at this tattoo.

Grey Grey,

My heart will always have a hole that I will never be able to fill, a part in which you will always live, play and smile. I will always be a little sad and broken hearted when I look at our tattoo, but I will also smile and feel the warmth of your love and spirit!

I love you Little Man, play hard

Love forever, Your Dad.

Ah! Da!

Grey's Memorial Comes to Life....

2009-02-13T23:42:00.000-08:00

I'm speechless.

If I had to say anything, Amazing, Breathtaking, Perfect..... are the only words that come to mind. My tattoo is everything that I wanted and more than I thought possible.

My thanks and admiration goes to the man responsible for making this tattoo a reality... Christopher Simmons. His amazing talent brought my poorly described wish into form. I can never thank him enough. His contact info for anyone that might be thinking about getting something done is:

Christopher Simmons

At Mystic Marks Tattoo Co. in San Marcos, TX

Shop Phone: 512-392-8141 Cell: 254-541-7303

www.myspace.com/tat2n_hellraiser

Christopher also did a wonderful tattoo for Nicole too. She got a beautifully colorful Grey'sGift with a shooting star. Perfect!!

Clean Slate.....

2009-02-13T05:32:00.000-08:00

Well, today at 1 pm.

I just had to give into the old before and after cliche. What I want to know is when did I become so pasty, white and pudgy? There was a time that I was buff! Nicole saw my chest after I shaved it, and laughed!

I have to admit that I look ridiculous! Next time you see it the memorial for Grey will be in place!

Wish me luck!

PS: My tooth still hurts! And I still don't feel good. Whaaa! Me!