She supposed to be 5

There is no way to even describe Ashley Kate's current life except to say that it is so very unfair. My sweet little girl should be turning 5 in 3 short weeks. She should be listening to each of us sing her happy birthday each day as we prepare her for the big day. She should be surrounded by our dearest friends and all of her family on that day. She should be enjoying the beautiful carnival we built just for her. She should be at home, asleep in her big girl bed each night as we anticipate the arrival of the amazing day she was born. Instead...

She's not aloud to just be almost 5. Not allowed to know only happiness and play. Not allowed to be at her house watching us place the finishing touches on her carnival booths. Not allowed to be just a little girl.

No, my sweet Ashley will be experiencing her birthday inside a hospital room Surrounded by IV pumps, and meds, and oxygen tanks. She will not experience the magic we had planned to put a smile on her face.

For one hour and one hour only my sweet girl slept. From absolute exhaustion she found a place in the night where her breathing slowed, her screaming ceased, and her mind drifted away from this place. That hour was short. It has ended and my girl is hurting again. This morning Ashley was 4 1/2 lbs. heavier than she was a little over 24 hours ago. She hurts. Her body aches from the weight of the fluid. Her left chest, rib cage, and groin area are bruised and bleeding and hurting from her line placement. The dressing will have to be changed today and it will require a group of us to hold my little girl down as it is done. Her belly hurts. She can't take deep enough breaths to actually oxygenate herself because of the pain. We doubled her dose of morphine, she gets it every 3 hours. We are still 30 minutes away from her next dose. Its disgusting to me that I am counting the minutes until I can push narcotics into the veins of my daughter who is supposed to be a happy, silly almost 5 year old. She has 1 hour left of her thymo infusion and then the poison that I hope is serving a purpose other than stealing her quality of life will be done for today. Not to be started again until tonight.

We have to get this weight off of her. I can hardly pick her body up off the bed to adjust her position. She can't even sit up under the weight of all the fluid. Its horrible. I want to see her laugh and smile and play and be silly again. Something has to happen today to help her feel better. I don't know what but something has to help her.

I don't have the energy to get to the shower this morning. I have decided to stay in my pjs under a blanket and hide from this day. What do I care? Im just too tired to care. Rounds can come in pjs just as easy as they can if I were showered and dressed. It won't change the outcome of what they have to say.

I have spent the evening watching video clips of our girl play, walk, ride her bike and her horse. I watched her play with Allie, snuggle with Blake and belly laugh with her daddy. I wish I could figure out how to get them on here. I want you to see her live. I want to share with you why we are fighting so hard for our girl. She was so happy. So alive. So thriving. She was. I know they don't believe me around here, but my girl was tiny, and beautiful, and silly and living. She was not the miserable, distorted, unhappy patient that they see this morning. THIS IS NOT HER LIFE! Her life is filled with happiness and joy. I can't figure out how to upload the video clips and move them over here. I'll keep working on it today. You have to watch her ride her bike. You have to see how normal she is. How precious it is. The tears fell from our eyes each time we saw her take off. You can't imagine what a wonderful feeling it was just to watch her be an almost 5 year old girl pedaling down the street.

We are tired today and hoping for some peace and some rest to come her way. Please God, let today be a good day. Allow my sweet Ashley to feel like herself in some small way. Please.