Random Thoughts

The words I write just spill out of me. They come from deep inside with no real rhyme or reason. Many times I sit down and they physically fall out onto the screen. As the hurt, the fear, the panic, the details emerge I somehow feel lighter. Its such an odd thing. Writing this journey down does not change it. It doesn't help Ash to get better. It doesn't do anything except keep me from literally vomiting all that I am taking in here on the floor of our room. Rather it is spit out onto this keyboard. I didn't want to keep track of this journey in the beginning. I dismissed Dave's idea of "blogging" and thought if he wanted to then I was fine with it. It was never intended to be told by me. Now I have learned that I have to keep track. I have to write it. I dont have a choice. If I don't share it then it is going to destroy me. So this is my feeble attempt to keep my head sane, my family informed, and my daughter's story told.

I'm sure you've noticed the spelling errors, the grammar mistakes, the lack of proof reading on the pages of this "book". I just don't care about those things. I don't. Nothing here is planned or edited. It just is what it is. Its not that I can't spell correctly or write a sentence that doesn't happen to be the longest run-on in the history of our language. I'm actually very good at english grammar. Its just that in the moments that I'm "spilling out" here I'm typing so fast that I hit the wrong keys and forget to end a thought before sharing the next. I don't know why I'm sharing this, but like the title said...random thoughts.

I'm sitting here in my room hiding from the nightmare going on in the one directly next to us. The little girl whom I shared was dying a few nights ago has just been removed from her bed. The last two days countless numbers of family members filed past our door and into hers to say their last good byes. I've sat and watched it all unfold since the moment I heard the screams of her parents outside my door. Its heartbreaking to watch this. I hate living here in the PICU. I've always hated it and I think its mainly because I know that this is where children die. All the time. Before my Ashley I never even knew there was a PICU and I certainly had never sat idly by while mommy's and daddy's watched their babies take their last breaths. There is a sound that comes from inside a mother's self when her child is gone that I will never, ever forget. It has been ingrained into my soul. It hurts as it pierces your ears and it travels to a part of your heart that is reserved for it alone. I'll never forget this sound.

I don't want this. I don't. Our team knows that. They have since the time I sat next door to the first child's death that I was present for here in the halls of this hospital. Not for my daughter. I want her to live. I desperately want to be the parents of the one who survived and never came back. Thats what I want. But...I'm not the Power who gets to choose. I find myself sitting here wondering how my Ashley's story will unfold. If we get to the place where nothing can be done to save her then I KNOW that her daddy will take her out of this place and we will bring her to her home. This part I do know. My stomach is literally in knots sharing that with you. What kind of life are we living that we sit and decide such things? Its not real. She will be surrounded by friends and family not by strangers and staff.

I planned the most amazing 5th birthday for our tiny pickle. It was incredible. The joy that we had as we prepared what was to be her best yet is something that hurts me now. The naive place I was living in as I sat in her play room with her at my feet painting those banners while my mom and sister sewed sides and awnings for the midway booths at Ashley's carnival seems like a life time ago. It wasn't. It was just 3 weeks ago. Now as we approach her 5th birthday Allie and are designing a back up plan. Her carnival will become the biggest welcome home party you have ever seen. It will be an amazing celebration of joy. But what do we do about her birthday? I'm working on it. I've developed an idea. We have secured a conference room here at the hospital. We have a theme. A design. We are ordering what we can and making arrangements for delivery. My family will all be coming to Nebraska instead of Texas. Our friends are welcome too. Its not that far to travel:) The time and date remain the same. Saturday, August 7th, at 6pm. I have no idea how Ash will be feeling at that time. I'm hopeful for improvements. Its 3 weeks away. I do know that it is designed around what she loves and if she can go down and enter that room then it will be a magical escape into a land that few ever see. There will be an underwater adventure waiting for my 5 year old and of course there will be flamingos. Large, pink, floating flamingos! (Thank you Haertlein family for the wonderful surprise! She opened her eyes, saw him sitting at the end of her bed this afternoon and pointed to him asking me to say "flamiiiiiiingo".)

Wow, I told you this was random so many things floating around in my head. Lots more things waiting to spill out, but my Allie just walked in with dinner and I'm going to spend my evening hanging out with her.