I should be sleeping. I have never felt exhaustion like I am feeling right now. But sleep continues to elude me. So I guess I will have a therapy session.
So many people along the way have said countless times about how Lucy's story has changed lives. How God is using lucy to bring people closer to him. I pray that one day I can appreciate it. Maybe one day I will be able to be thankful for that. Not right now though. I just can't seem to put my mind around why a great and powerful God has to use a 5 year old child to change people's lives. I just don't understand why God, being so omnipotent, can't just change people's hearts.
So as I wrestle with this thought for years and years to come I would just ask all of you who have left such kind comments to not let lucy's suffering be in vain. For those of you who have said she's changed your life, shes made you a better mother, she's turned your heart back to God...please don't let her suffering be in vain.
It's easy to get wrapped up in the story while we are all living it. But in 1,2,5 years from now will you remember a little girl named Lucy? I promise you if you had ever really met her you would never be able to forget her.
God created Lucy differently. I now wonder if He made her so full of life because he knew what a short life she would live and He allowed her to enjoy it just a little more acutely than other children.
Lucy has communicated with us very minimally the past few nights. She has, however, rattled off phrases and smiled some. It's almost as if she is remembering every happy thought shes ever had. We've started writing down the things she is saying. She's talked about building sandcastles, riding the boat, hunting for Easter eggs. She's even fussed at Jack a few times. That was hilarious!
I've realized that my child has lived a blessed life because all she has are happy memories. There are no hard times Or bad moments to relive. She even managed to smile her way through 18 months of hellacious cancer treatment and continuous rehab.
I will never, ever get up on my daughter. EVER. As long as she has fight left in her I will be right beside her. My heart aches beyond words because I wish i could fight for her. I wish I could trade places for her. But I can't. All I can really do is hold her and comfort her. When she becomes semi alert during the day she whines and moans until I pick her up and hold her. And then that's what I do until it's time to go to bed. Hours upon hours upon hours of sitting and holding and comforting. I know it brings Lucy comfort but I honestly think it does for me. There is no greater validation in the life than to know that your arms can take away hurt, fear and sadness. I have told Lucy everyday, many times a day, how grateful I am to have been chosen as her mother. It's been one of the greatest gifts in my life.
I don't know if we will ever leave this hospital. Lucy's little heart is beginning to show signs of fatigue. Her little body is so weak. Cancer aside, I'm just not sure her body can fight off whatever it is that has wrecked havoc upon her system. We want to go home to spend some quality days as a family but right now she is too weak to move. So we are hunkered down. Fighting this battle here in the place where we asked to be.
LeBonheur Hospital. The place where I found hope 18 months ago and the place where I am now finding peace. We are surrounded by doctors, nurses, and hundreds of other employees who fell in love with Lucy last year. They have made it their mission to make sure we are comfortable and feel as safe as if we were at home. These friends we have met along the way are guarding our family as if we were holding the queens crown jewels. But, I guess we are in actuality. We are holding the Kings crown jewels.
Many have asked for specific prayer needs. I will list a few but know that blankets of prayer are needed because there are so many specific needs that I can't even begin to wrap my mind around them:
-rest, mercy and no suffering for Lucy
-understanding and no fear for Ella
-a constant remembrance of my love to fill Jack
-Lucy's father. My precious husband. May he continue to grieve and not feel as If he has to be strong for any of us
-Lucy's grandparents and immediate /extended families
-restored faith for all of Lucy's friends and all the little children who have been praying ceaselessly for healing.
-Lucy's doctors, nurses and other care team members
-eventual healing for our family