Haunted

I know it's time to write again when I shut my eyes and I play back Austin's last 4 hours of life. I am feeling haunted. We went to visit Austin late last night. We shone our car headlights on his grave. It was chilly out. It was dark. All I wanted to do was dig him up. Fuck a shovel, my rage and pain could drive my hands through the dirt 6 feet. He's all by himself down there, he's cold, it's dark. No Crystal his body is there but his soul is not. But he's right there. I just want to hold him and tell him how sorry I am. You did nothing wrong Crystal. He is at peace, he is healed. I am feeling haunted. Haunted by leaving him in that hospital bed after he passed and walking out with my empty car seat. I am haunted by positioning his lifeless body in that big bed. I am haunted by folding his blue cold hands in prayer and propping pillows around him to keep him in place. I am haunted by walking out without him. I pushed his empty stroller down the hallways. I pressed my forehead to the handle I had no strength to lift my head. I couldn't bear seeing peoples facing as they came to realization what we were going through.  I am haunted by Chloe laying in Austins crib when I got home and her kicking his toy which made his song play. I am haunted. I am haunted by seeing Austin in his casket and his pillow slid down a little exposing his 21 staples holding his head together. I am haunted by seeing some embalming fluid leaking on his white sheet in his casket. I am haunted by how cold he was as I kissed him in his casket. I am haunted by the fluid coming out of his nose after we held him for 4 hours after he had passed.  My energy is gone. My smile is gone. My peace is gone. I have no idea who I am. I am no longer excited about reinventing myself. Everyone, including myself, loves a come back story. But I am just lost. I am the opposite of numb. I feel everything, and it is amplified. Things that used to bring a sign of peace like someone named Austin, or a superman logo, just regurgitate the pain. Waves of nausea. Why does everyone else with Sturge Weber live? Why? Why was our case so bad? We donated Austins brain and neuro cells to the Sturge weber foundation. I pray they find more about why we had it so bad.
      By nature I am not a trusting person. Some people trust until there is a reason not to. I do not trust until you show me you are trustworthy. How can I trust you God? How can I have faith? Sometimes I reach for signs and give you credit, but it is not you. It is just my wishful thinking. I was not a person that needed to "slow down and enjoy the small things" my dad taught me from a young age that life is short and to drink it all in..........I didn't need that lesson God. What are you doing? I have been through enough in my life before this. How dare you. My heart could start a thousand fires. I do pray that my feelings change. But this is where you and I are at right now. So deal with it.

  

In the still.... everything echos

We received a bereavement package in the mail recently. It is overwhelming. It has been sitting on the table for several days. My eyes catch a word here and a sentence there as I rush by in my day to day housework. I'm not ready to look at it. I don't want to put it away, I don't want it to be out of sight out of mind. So there it sits. I need to digest it slowly. A front page of a pamphlet here, a foreword of a book there.
Austin has been gone for 52 days now. I wonder when or if I will ever lose sight of that number. Will that be like forgetting him? What will happen when I don't think of him 94 times in a day? What happens when it's only 52 or 17? Things are really beginning to hurt now. I am finding it harder to step away when I feel that lump in my throat. I almost broke down in tears at my gym/bootcamp. Like the physical exertion is taking away the energy from being emotionally tough. The everlasting question "why" has returned. Now we just sit in that. Chloe and I had a beautiful time in California with JoLynn and Nicole. It was very important we went to visit them and clear our head. Now upon my return, I feel forced to deal with the weight of everything. Chloe is becoming more emotional when we go visit Austin. SHe says she "misses her daddy and her austie." Dad, of course, is at work. She asks more intelligent questions. More like statements. " I want him to come back into my house." Breaks our hearts. She so simply and purely articulates our pain. I think its time to bring in some help. We will attend a support group. Maybe they can help us from there. I still see you, God. I am still in tune with your signs. We received a beautiful gift (one of the many) on my toughest day. I know that wasn't a coincidence. These gifts are so beautiful and so on point. We are so blessed but still so broken.
   

A letter to God

A letter to God

As you know, our relationship is still in its early stages. With most relationships the majority of people are on their best behavior, they are polite, they show their best side. Not you and I. We began our relationship in the middle of a shit storm. I had just given birth to a very sick baby with an incurable disease that would take his life. How could this happen? I found you God, Oh, I found you. Not in the beautiful angel singing, dropping to your knees and testifying kind of way, but in a rage. I needed to direct my pain and rage at you. I had nowhere else to dispense it. After all, you did this. You took my dreams and you ripped them apart. I watched my husbands beautiful, youthful heart break right in front of my bloodshot eyes. You hurt my child. You tried to give me signs, always. Some days, I pretended not to see them just to spite you. So your signs became more dramatic. Such as the one below...this was the view from the ICU. Visible sign says "Heaven"

You must know me, I need it in my face. I wasn't able to chalk up these signs to coincidences any longer. You made it too clear. You made it clear you were here, and you weren't going anywhere, no matter the volume of venom I spewed at you. A short time passed and in between the panic, seizures and glaucoma surgeries, Austin had his first smile. This was his first smile.

He developed a personality. He knew who we were, he did cute baby things, he loved us and we felt it.......

. and my sharp edges of rage blurred. Would I have been so excited about all these things if he wasn't sick? Probably not. When you have the basics taken from you. (water, shelter, a healthy child) It is so much sweeter when you get it back. Every single thing Austin did was amazing. The doctors continued to paint a gloomy yet "realistic" picture, Austin continued to shine through. Here God, is where I began to see your work.

Someday I will share with everyone else all the signs you  have given me, and continue to give me. Most will not believe, but I don't care. A spiritually journey is an understatement. How can our relationship (376 days of Austin's life + the 42 days since he has passed) feel so much in fast-forward? I feel like we have been through so much in such as short time........But..... we are still together.......I am not sure we are BFFs yet, but Austin wants me to learn to let go and trust you. So thats what I will continue to try to do.