Tuesday, May 24, 2011

What I Have Been Doing?

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.

Sunday, May 22, 2011

Time to Start Again....

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.

Sunday, December 20, 2009

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

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!

Friday, December 18, 2009

Greyson Was Born 2 Years Ago Today!

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.


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

Saturday, December 5, 2009

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

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.

Sunday, November 15, 2009

A Friday Night Out!

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.


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.

Tuesday, October 27, 2009

Yesterday Was A Really Bad Day!

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.