I've done my best to not be, but it is so, so difficult. Tonight I'm struggling. My heart aches and my stomach hurts. I've spent some time reading the official pathology report from Ash's scopes last week and things are not good. Full disclosure? I don't think they gave me a complete picture of what those slides actually showed. My heat sank as I read line after line. Its bad. Its really, really bad. Her bowel is far from being healthy, and it is definitely not normal. As I read the words on the paper the gravity of this whole situation finally sank in. I honestly do not know if her bowel will recover. I don't think they do either. I think its going to take an honest to goodness miracle to get our little one back to the condition she was just a few weeks ago. She has a long, long way to go and an awful lot to accomplish. I am afraid we will be her for a very long time. It breaks my heart. Every single aspect of it. My heart is broken. It's one of those days when I wish I could climb in my bed and hide under the covers and never, ever have to get out. I just don't know how she is going to be able to heal a bowel that is so extremely broken.
When I think back just a mere 2 weeks and 6 days ago it blows my mind. Our baby was so happy. She had no signs. No warnings. No symptoms. How in the world can our world fall apart as she slept? I just don't understand. What happened?
I talk to the kids on the phone and fight back the tears each and every day. I miss them so much. I just want to wake up from this nightmare and find Ashley Kate fast asleep in her nursery, with Allie a few feet away sleeping peacefully with her little eye mask on keeping the light from waking her as I tend to her sister. I want to tip toe into my son's room. That child who I know is leaving our home in just five short years and kiss his head as he sleeps. I go in each night and breathe in the moment thanking God for him. Ash and I are missing precious, important, valuable days with her brother and sister and I don't want to miss another.
I need a miracle. Again. I need God to show up and turn things around. Again. I need for Him to intervene and heal my daughter and allow us to take her back home. I just don't know if He is going to.
The thought of Christmas in this place is killing me. I read that pathology report and my hopes for making to that plane on the morning of Christmas Eve with our princess in tow were basically dashed. I just don't see how its going to happen.
I miss home. I miss my friend. The one I hold hands with each night as I drift off to sleep. I miss my son. The one who encouraged me to just be strong and determined tonight. I miss my Allie. She just "needs someone to help take care of her. She wasn't ready for us to leave again." Oh, how it breaks my heart to tell her goodnight by telephone each and every night.
Our tiny girl lay in this hospital crib tonight and inside of her body the rejection and the virus are trying to destroy the gift that God gave to her a short two years ago. I watch her face as the turmoil inside of her causes tears to run down her cheeks. As she sleeps she crys. Her tummy hurts. I imagine even more than her mommy's heart does.
Hoping for a brighter tomorrow. Praying for healing as she sleeps, and shedding tears until I fall asleep.