Amazing, Isn't It?

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!

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.....

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

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......

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!

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.....

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.....

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!!

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......

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

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!

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.....

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!

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....

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.....

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!

2 Months

I never spent much time thinking about how blessed we were. I never allowed myself to stop and think about how much different our life could be. I was always focused on work, money, paying the bills, finding extra shifts for overtime and making time to play and enjoy time with the kids. We were blissful, we were happy. But there was always more. More time for.... everything....

I never stopped to think. What if there wasn't more time? What if time was short? I should have been more aware, more appreciative.

I haven't spent much time allowing myself to think in terms of regrets. I have always known that they are there, lurking behind me, darting behind the shadows, trying to sneak and worm into my mind, my thoughts, my doubts. I built my wall of bricks, memories, tears, smiles, pictures and making the most of time with the other 3 boys, to keep the ghosts of regrets away. Today, I have been overwhelmed by those ghosts, those regrets.

Regrets......

Why didn't I give Grey more kisses, why didn't I hold him more, why didn't I do more research into recessive disorders, since Seth has PKU? Why did God take him? How can I do this for the rest of my life? How can I go on living without Grey?

Melancholy, they call it. Depression. Pain. Sorrow. I have been trying to avoid these thoughts. I have been running, dodging, trying to avoid the pain, the sorrow. These feelings are like blood hounds. They never stop. They are never give up.

2 Months.

I have been unable to breathe all day. I slept, only because I took 2 Vicodin for my tooth, I woke up feeling dizzy and nauseated. The straight jacket of my sadness is very constrictive and tight today. I can't stop seeing Grey everywhere. My chest is tight.

Grey, Grey,

Mommy and your big bothers and I miss you very much. Riley was so cute today with the butterfly habitat, don't you think? He was so excited. He's already named half the caterpillars. Mommy, Seth, Riley and I played Guitar Hero tonight before bed. We had so much fun. I know you were laughing at Mommy and I. It has already been 2 months Grey. It seems like a lifetime ago. I know you are happy, and able to play now, but I miss holding you.

We love you Grey,

Ah! Da!

2/12/09 Breathe, Just Breathe......

I just got home from working all night. I'm tired, I'm in pain, I walk in the front door and it hits me in the chest. SMACK!!! Squeezing, tightening, I tried to inhale, and the python just tightens it's grip. The old worn shirt isn't comfortable today, it feels like a straight jacket. I can feel a panic attack tickling the little hairs on the back of my neck.

HELL! I was just fine two seconds before I slipped my key into the lock.

The boys are sleeping, not wanting to roll out of bed into the cold morning. Nicole forgot to turn the heat on before calling it a night. The groggy, surly bears that are Luke and Riley in the morning threaten my control on my temper. Seth, God love him, is sunshine and joy wrapped up in a spastic, hyper bottle just waiting to POP! He is so..... Seth! Most mornings I love his energy and.... Life! NOT this morning. I can feel my temper coiling like a vicious Rattlesnake just under the surface of the pool that is my specter of calm. I desperately try to grip the head of the snake as it snaps and jerks toward anyone foolish enough to approach me. I run the risk of being the next victim.

Nicole comes out of the bathroom looking for a hug, the snake jerks toward her, the tickling panic attack is cascading down my spine. All I can do is shake my head and mutter, "I'm in pain, my tooth is killing me." The truth is, if I surrender to her embrace, I will melt into a puddle of emotion. "Breathe Bill", I tell myself, "Just Breathe".

2 Months.

2 Months ago the bubble that was my world burst. My charmed, perfect life fell apart.

2 Months. 2 months since the brightest eyes this world had ever seen closed forever. Since I forgot how to breathe. Just Breathe. When did such a simple thing become so difficult, so hard?

2:08 pm on Friday December 12, 2008......

Breathe, Bill, just Breathe.....

Stupid..... Stupid......I Blew It!

Stupid!

Boy, can that word describe me sometimes. I can't count the times that I have succumbed to the hypnotic allure of the behavior and actions that are described by that word. Two months ago this very day, I laid the first brick on a wall that I have been trying to fool myself into believing isn't there.

Stupid.....

I allowed myself to believe that I could walk right through that wall, just by believing that it wasn't there. And guess what? I almost made it. But as luck would have it, SMACK, I ran right into not only my wall, but Nicole's too! I allowed myself to become pushy, too cocky, too sure that I had broken thru not only my self made wall, but the one I had discovered cutting me off from getting to my wife's heart. I pushed too hard. Stupid......

Stupid.....

I let my guard down for an instant, and thought that after a night full of tears and opening up our pain for the other to feel, that I had an open invitation to put up my feet and make myself to home. And when Nicole didn't respond the way that I wanted, well, slam!! Down came the wall! How dare she push me away!

Don't I deserve affection!? Can't she give me what I need!? How dare she need something different than what I need at that moment?

I am scared. Nicole has never put a wall up between us like this before. My walls are always made with a Nicole access hatch for her to come and go as she pleases. I made the mistake after our talk and day of playful teasing of thinking that I was invited to come and go as I please too. Not so!

So here we are. It has been 2 months. It seems like 2 lifetimes ago.

Stupid....

Grey,

Daddy is sorry. I will write more later, I promise.

Love you,

Ah! Da!

Bam!!

Today I went to a new Dentist, an Endontist. My tooth won't be fixed until the 23 rd of February. MAN! I don't mean to be a baby, but have no idea how I am going to make it another 2 weeks! This SUCKS! He refilled my Vicodin, but it was barely keeping me comfortable & if I take two, I sleep! Driving & Vicodin not good. Bill must to awake to drive! What to do?

After my appointment, I went over to Nicole's school and took lunch. It was so nice. We just sat and talked about stupid things, how good it felt to share our feeling, and..... drum roll..... Tattoos! Ever since Grey died in my arms, I have wanted to get a tattoo. Any of you who know me, know that there was something about being on my chest and listening to my heart. No matter how much Grey was crying, or how mad he was, all I had to do was put Grey over my heart and hold him close, and he would settle down and give me kisses or go to sleep. I loved it. I loved being that for him, sharing that with him. And because of that bond, I have wanted to get a tattoo on my chest celebrating Grey and to remind me of the times that he snuggled on my chest listening to my heart.....

At first I wasn't sure what I wanted, I just had this need to get one and, (this sounds weird), endure the pain. What's THAT?

THEN BAM!!!!!!!!

Nicole's brother Paul had a road sign made for Nicole after she told him about Greyson being named for the Dave Matthews Band song "GreyStreet". In the instant that I saw it I knew what my tattoo was going to be. A street sign, with Grey's birthday 12/18/07 and his initials. I told Nicole about my idea, and as she always does, she made it better! She reminded me of a line in the song,:

"on the corner of Grey Street and the End of the World, the colors fade to Grey."

She was so excited that her eyes sparkled, and she nearly beamed as she recommended that I get a sign post with not 1 but 2 street signs! 1 the "Grey Street" with "121807" and Grey's initials and the other intersecting it with "End of the World" and "121208" for the day that he died on it. I LOVE IT! The idea is perfect! So I have been wanting to get it done since. I have been emailing a tattoo artist and today after lunch with Nicole, I went to meet him like he had requested to discuss the design.

It went awesome! He really had great ideas and we made an appointment for Friday the 13 th. Eewwweee!! Spooky! I can't wait till Friday! I think that Nicole is jealous! And I just love making Nicole jealous!

Grey, Grey,

I can't wait Grey, I think my tattoo is going to be awesome! Daddy wants to get it on the place you were snuggled in my arms when you took your last breath, Little Man! I almost think that the pain I will have too endure in creating your memorial will help me continue to heal.... I need that pain, crave that pain. To, if only temporarily, deaden the pain inside the hole in my heart.

Love,

Ah! Da!

Together.....

Sweet Nicole. She hasn't been sleeping well. Neither one of us are. She dosed off on the couch after dinner while I was helping Riley with his homework. I should have let her sleep! Riley and I moved her into our bedroom and helped her get into her PJ's. Then I got busy helping the boys settle into bed and take the trash out, etc..,etc...

While I was outside with the dogs, trash and a unmotivated teenager, Nicole and Riley snuggled in bed. I really hoped to find her asleep. But nope! She was watching the weather report while Riley slept. While I sat down on the couch with Seth to get him to sleep, She continued to watch TV.

About 45 mins later, Seth was sleeping and I was on the computer. In walked Nicole. Still awake! I instantly saw in her eyes that her thoughts were on Grey just as mine were.

Back just after we found out about Grey's prognosis, Nicole and I spent several nights just holding each other and sobbing together. Each of us taking turns feeling the others heart break and shatter with each shuddering breath. I really am thankful for those times before Greyson was in the throes of his battle to come. Those nights gave me my strength for what was coming, the knowledge that Nicole and I were together and in complete agreement over how to care for and handle Greyson's coming death, life affirming. But it has been 2 months since Nicole and I had shared our pain completely.

Nicole laid down on the couch facing the one on which Seth and I where seated. Then, with tears in her eyes and a jagged breath, She looked at me with pain-filled eyes, and said, " I miss our Grey."

My chest tightened and I couldn't breathe for a moment. For the first time in a couple of weeks, tears stung my eyes.... Our feeling and concerns just flowed after I managed to whisper, "I know, me too baby."

Together...........

We soothed each others fears of forgetting our Little Man. We shared our pain, ... I slowly felt the tightness in my chest subside, I think Nicole felt better, closer to me. I learned that Nicole and I are feeling the same fears, pain and sadness. The distance that I imagined, just that, imagined... Our souls are so made for each other.....

Together..........

Grey, Grey,

Mommy and I love you and are going to take care of each other. I promise. I know that you are proud of your Mommy and so am I. She is incredible and so strong. But we miss you so much.

Love,

Ah! Da!

It SUCKS!!!

It has been a very long day. It started at 7 am, helping Nicole and the boys get off to school. I tried to lay down for awhile and rest, but sleep wouldn't come. Too much on my mind, I guess. Here I am still awake, working the night shift.

Times like this are the hardest. I try to do things to occupy my mind, but I'm tired and I'm losing the fight. My mind has it's own ideas, Grey, Grey. Everywhere, no where, my heart is like a twenty-ton weight. My chest tightens and I can't breathe. I can feel the icy edge of a panic attack tickling the surface of my skin, goose bumps. How can it be possible? 2 months is fast approaching. I don't know how I will keep doing this. The pain and sadness is like a well-known, well worn shirt now.... It's almost a trusted friend.... With the pain I feel closer to my sweet boy, my Grey. I almost take comfort in the sadness, it and pictures are my only ties to him that are easily accessible to me. I am so tired of trying to stay positive about our loss of Grey. Sometimes I think, "If one more person tells me Grey was here for a greater purpose, I'll go mad!!!" I know that they are right, but I just want my boy, to watch him grow, learn, and become everything that I dreamed for him when he was born.

These times are so hard! I feel like such a baby!

Grey,

Daddy is so proud of you, and I miss you so much. I panic sometimes that I am forgetting what it felt like to hold you tight. Then your big brother Riley jumps up on my lap and hugs me tight! I remember that I will always have that feeling in my heart, and then it hurts more. I know that you are happy and healthy with our father, playing like you never had the chance to here. But I MISS YOU!

Love,

Ah! Da!

These times are so hard......God please help us....

Arrgghh!!

My head hurts. I am sure that my blood pressure was way outta control today. I have a new respect for the whole political process, and see the beauty of this great country that we live in.

Today I found myself in a meeting with members of the Texas legislature's staff and representatives from the State Newborn screening and genetics program of the Texas State Lab, discussing the steps necessary to bring Texas up to the ACMG (American College of Medical Genetics) recommended standards for newborn screening. If we can do this, then when the NIH (National Institute of Health) makes its recommendations at the end of February, to add 5 diseases (including Krabbes) Texas will be in a position to enact those recommendations. House Bill 790, passed in the 2005 legislative secession, states that Texas wants to adhere to the ACMG recommendations. BUT! It was never enacted completely.

ARRGGGHHH!!!!

As I sat in the conference room listening to the State labs concerns and complaints about lack of funding, I felt this deep seated anger welling up in the back of my heart.

Is this really the way that we as the citizens of Texas, want to allow bureaucracy to decide something as important as our children safety and detection of heredity diseases?

As I sat there with my head swimming and my heart drowning in a seething rage, I had to hold on tight to myself to keep from shouting at the people to wake up! I tried to PATIENTLY remind them that this about BABIES! Not money! We as a State find money to stock our lakes with fish for God's Sake!

Still, I have to remind myself that we have to go thru this step too! For the fact that Grey has only been gone 1 month and 4 weeks, and we are already working to get legislation started is amazing! And still, it is not happening quickly enough!

Well, off to work I go. I need to cogitate on everything that happened today. Alot to process.

Alot to process.

We're starting Grey!

Ah Da! Loves you.

Oh! Man

I have been working all weekend.

The times that I stay busy are so refreshing. With my mind filled, I don't think of Grey. But he is always there. He is my first thought when I awake, the last as I drift off to sleep. I try to find things to do that are constructive, email to people and shows about Grey's story, brain storm about our attempts for legislation with my sister Adrienne, read Nicole's blog, look at pictures. I even try to lose myself in strategy games.

Nothing works for long.

Don't get me wrong, I still have 3 wonderful, healthy boys, and I thank God for them every day. But they are hurting too. I worry about them, look at all the trouble I'm having dealing with this. The desire of a parent, no the being of a parent is to protect our children.

At this I am a failure.

I couldn't stop Grey's disease. I couldn't protect my boys from losing their little brother. I can't protect them from the pain of his absence.

I have learned one brutal truth... We mere humans have no control over anything! And as a control freak, I am FREAKING OUT!!!!!

I have always prided myself on providing for my family, protecting them, raising my boys, and showing them the love and joy of life. I have been filleted! I had to face the reality of the fact that Grey's illness had the potential to ruin us financially. PROTECT THEM? HA! Raising my boys?

Grey is dead.

The only one that I still hold hopes of accomplishing is showing my boys love and the joy of life. And mostly Grey has shown me how to do that. He was always happy and glad to awaken. He loved his family and he loved life.

I promise Grey, I was paying attention. I'm just have trouble working thru the pain and sadness. I will NEVER quit, Little Man! Never!

I miss you Grey.

I miss your smell, your hair, your smile, your kisses!

I love you.

Ah Da.

Normal? What's normal?....

Normal.....

I used to know the meaning of that word..

Normal for me was, work. The reason for work, my boys.

I love spending time with my kids. I can never get enough. I think I did a good job of spreading my attention between the boys. Before Grey, I was the champ of making time to play video games with all three of the boys. Especially on Tuesday's, my only night at home. Oh! Not to mention that Tuesday's where date night. I'm positive that it was a Tuesday that Grey was conceived! Heh, Heh! Nicole's blushing now.

When Grey arrived, well, that all changed. Newborns need so much one -to- one time. To the Boys credit, they got it. They were disappointed, but complaints were few. Date nights, well, they were exchanged for DUTY nights. My night to let Nicole sleep undisturbed.

I loved the routine. After all, I had been the one who wasn't ready to have all of the kids in school. I loved being Mister Mom too much! I had done more than my share of hassling Nicole into having another baby. Not that I didn't complain about no date night! I did my share of that too. Probably more than my share. Nicole was amazing! She did it all, with a husband working all the nights during the week and 32 hrs on the weekends. As we settled into the routine with a newborn, I started having more time for the other boys and Nicole and I found some time too!

It was blissful! I was giddy I was so happy! 4 Boys! I was the MAN! And the older boys were loving it too. We had more time to do the fun Dad & boys stuff. Grey would just laugh at us! He loved to sit on my lap while I played video games with his bothers, very rarely would he get fussy.

As it became obvious that Grey was very sick. I would desperately hang onto the routine. Spending time playing games with him on my lap, naps with him on the couch, tussling with his brothers, except I started holding him in my arms while I tussled. He would just crack up! Laugh and laugh! He loved it! The rougher the better!

Normal.....

I'm lost... I have to struggle to find the energy to do anything... nothing holds the same attraction anymore. I just don't have the energy to tussle anymore. The X-Box broke and was gone getting repaired for two weeks. It has been back for over a week and it took Seth getting angry at me to realize I hadn't touched it yet. Friday night before work was the first time we had played in weeks. I worry that I'm neglecting the boys. I walk around in this haze, before I realize it, I have to go to work, and another day is at a end. I have to remind myself to smile at the boys. I don't think they buy it.

Normal.....

How will anything be normal ever again?

I'm scared to look at Nicole sometimes. The distance between us sometimes, .... I think that my mere presence is painful to her ..... My selfishness has hurt her so much already.

Normal.....

Will I ever be able to take a deep breath again without the risk of losing it?

Grey, I love you my son! I miss you so much. But I would go though it all again in a second.

Love,

Ah! Da!

Nope.....

I just woke up. It is 3 pm and I have all the lines on my face from the sheets, I didn't move a muscle. He didn't come...

No dreams.....

Is he okay?

Why don't I dream about Grey?

Ouch!

It happened on Tuesday night. Nicole and I were lost in the blissful haze of sharing our Grey with Jacque Waggoner and Chris over dinner near their hotel. KRUNCH!!!....Stabbing Pain!!.....It finally broke! Dr. Smith, my dentist had warned me to get a root canal and a crown. But we were pregnant with Greyson and then he was here and then he was sick;..... then he was gone..... And I hadn't done anything.

The whole back half of my back molar had split off to below the gum line! Leaving a jagged, very sharp edge rubbing up against the soft underside of my tongue. I hastily excused myself from the table and went to the bathroom to dig out the fragment from my gum! OHH man! Those of you who know what a baby I am about the dentist, understand.

Any rate, I set myself to ignoring it after that. Nicole and I finished our wonderful evening with Jacque and Chris. Talking about Grey and the difference that we want to make because of our losing him helped me forget.

I managed to ignore it all of Wednesday and Wednesday night at work. And while we were at the Capital, no problem. But on the way back to New Braunfels, we stopped to eat and I couldn't chew! It felt like I was slicing my tongue in half. Again, those who know, understand how bad it was, because I called for an emergency appointment at Dr. Smith's! It had abscessed and having it dulled so that it wouldn't tear up my tongue was awful! Dr. Cole told me the bad news, Root Canal very soon, or pull the tooth!

Dr. Cole gave me drugs!

What is wrong with me? I find myself giddy with anticipation at going to sleep this morning after working last night, will the pain & the pain-killers bring him?....

Will I get to hold my Baby?

My arms and chest.... The aching.....

Grey? I'm so tired. Do I dare sleep? What if he still doesn't come to me?

Grey?

Ready..., GET SET!.....

WHEW!

I won't lie to any of you, it was almost over. The roadblocks were weakening the support that we had managed to find. But then,...

In blew this Divine intervention that I can only attribute to one of Grey's Gifts. Jacque Waggoner. Hunter Kelly's grandmother. And I kid you not, she is a force of nature. What are the odds that this week, the pivotal week, she would have to come to Austin, Texas for training on a new fundraiser software for Hunter's Hope? To perfect, to right, to what was needed.

I must admit, I too had started to succumb to the negativity of the opposition to legislation. State Rep. Paula Pierson had authorized her Chief of Staff Maureen Perro to research the support for our cause for expanded newborn screening. And she too had been told, "oh, there is no monies for that right now; we can't do anything until an advisory board is created; no professional organizations are willing to support until the National Institute of Health advisory board recommends Krabbes for addition to newborn screening; etc, etc."

Nicole, Adrienne and I had pretty much resigned ourselves to the fact that all we might be able to accomplish this State Secession was creation of a State Advisory Board and possibly requirement for doctors and hospitals to educate new parents about supplemental screening and reasons for it. Then suddenly Jacque called me on Saturday to return my calls and tell me how sorry she was about Greyson's death.

I was working as I always do on Saturday, and I had to abruptly end the conversation because my client needed me. But I wanted to continue talking to her,.. She just got... it! The pain, the helplessness, the want to make it better,... everything!

As I hurried to get off the phone, she mentioned that she would be in Austin, but in my haste, I miss understood when she would be coming.

I didn't think about it again over my weekend and then Monday she called me and she was in Austin! She wanted to meet Nicole and I! Then I got a call that she scheduled a meeting with Maureen Perro and wanted us there! We love her!!

The meeting with Rep Pierson's Staff was amazing. Jacque tactfully deflected the budget concerns and caused a 180 degree turn-a-round. Now there is passion, and purpose again.

Thank You Jacque! You will always be in our hearts and a part of our family, we are blessed and honored to know you.

The moment is upon us Grey, and again you have taught us how! The troops are assembling and the fight is almost joined. I Love you Little Man! Ah Da! Will make them all know and love you.!

Absence......

The house is so quiet.

Why haven't I dreamed?

The Sunday after Grey died, I woke up around 3 am because I swore he was crying. I was at the door to his room before I realized... Oh my God!

That was the only time. Why? Was it real? Was he trying to tell me he misses me too?

I must be honest, I really don't understand. Why did he have to pay the price to wake me up to the precious nature of life? I don't get it!

I envy Nicole. She has the ability to really connect to the reality of Grey's absence. I feel as if I am stuck on the outside looking in. I miss him, but why doesn't if hurt more? Will I ever feel like myself again? I haven't been able to connect with my sadness and pain for a couple of weeks. When did I build the wall? Who knew that I was a bricklayer? I don't want to sound weird, but sometimes I want to feel the pain! This numb thing is beginning to piss me OFF! I don't want to be this emotionless Vulcan walking around. It's not helping Nicole and I relate. I find myself getting angry about the fact that she in touch with her pain and sadness.

Am I glad, no, no, relieved that Grey is gone?

Sometimes, when I get to hold one of my nieces or my nephew, or precious little Cash, my arms and chest burn. It is this weird aching sensation. And I have to force myself to let them go. What is THAT?

The house is so empty.

I miss you Grey.

Ah Da! Loves you. I know that you must be there. Be patient with me Grey, I will get through that wall.

About Me!

Some of you may know me, but for the purposes of this blog, I will pretend that I just dropped in from another dimension. I was born in San Antonio, Texas on December 3rd, 1968.; A very good year. So yes, I AM 40 years old! Now shut up and listen! I have always been a bit of a loner and a nerd, so I like horseback riding, gaming and anything that has to do with computers. I lived in Alaska from the time I was 18 months old until I was 12 years old. I graduated from Smithson Valley H.S. in 1987, Joined the army in 1990 and got out in 1998. I married my soulmate and the sun to my moon on Feb. 16, 1997 and am the father to 4 rambunctious boys. Oh! I forgot. I work as a Pediatric and Private Duty Homecare Nurse. So? Any questions? Good!

My wife, Nicole, is the best! I credit her for what I have made of myself. Really! Sure before we married, I was a nurse, but I didn't have any direction. I was very negative, I was done with dating, very anti-social and didn't have any want to change. If you had asked me, I would have told you that I was happy. After all, I had always dreamed of owning and training a horse, and got validation from my work as a nurse. (Helping people is a powerful drug.) When Nicole literally, flagged me down, I thought I had it made. Boy, did she wake me UP! Spending time with her was like electricity. She opened a whole new world up to me. She has the ability to see people and life with such beauty. For me the world was just different shades of grey. No joy. No sun. No one to trust or count on except me. She gave me so much, she gave me,,, FAMILY.

And now I am not just Bill, I am heydad! Nicole has given me these 4 amazing spirits in the form of our 4 boys that wear me out and energize me at the same time every day. I remember, I was complaining to Nicole one day that I never got any emails, and she told me to get off my butt and get my own email address. Well, I couldn't decide on a name that fit. Just then Seth, son #2, bounced into the room yelling, "Heydad!" Nicole and I looked at each other and it stuck. Now, not only is that my email, but my online gamer tag also. Did I mention that I am a gamer? Just checking.

So, now I am really living the life that I was destined to live. I am a DAD! I have 4 beautiful sons. Luke is the oldest, he is 13. He's just like me when I was 13, except good with girls. I HATE that (jealous)! Seth is next, and he is 9. He has the biggest and most tender heart. He is also more athletic than I will ever be. He gets it from Nicole. Riley is the 3rd and he is 6. He is Nicole in boy form. He has the most amazing sense of humor and loves all music. Then there is Greyson, "Grey". Grey would have been 1 on 12/18/08. He earned his wings on Friday 12/12/08 at 2:08pm in my arms. Please visit his website @ http://www.greysgift.com/ he was my bud. I can honestly say that there was never a time that he wasn't in my arms when I was home. I miss him very much.

So that is me as of today. And now we have a beginning to start at. I have been feeling since Grey's death, that I need to do more, share my thoughts more. So I want to try to do that with this blog site. Hopefully I won't bore everyone to sleep. I have been hesitant to start a blog, because, what if no one reads it? That would suck!