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....