Saturday, August 29, 2009

Grief is Like a Storm

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

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


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

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

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

Friday, August 28, 2009

Unconditional Love....

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

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

Death was a natural part of life.

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

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

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

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

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

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

But we.


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

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

Wednesday, August 26, 2009

Reality Just Stinks!

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

Good Job Luke! You make me so proud.

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


A lifetime of firsts unfulfilled.

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

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

I get it now!

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

"I miss Grey."

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

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

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

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

Saturday, August 22, 2009

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

My Head is Swimming!

I haven't blogged in weeks.

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

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

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

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

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

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

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

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


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


Ah! Da!

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

Saturday, August 8, 2009

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

Goodnight Grey, Grey. I love you!

Friday, August 7, 2009

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