To Blog or Not to Blog?

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!

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?!?

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

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.