A Moment In Time

There are probably 10000 times a day that I wish I could freeze the moment and take a picture of our precious Elle. My heart melts when she smiles at me, or laughs, or reaches out for me and her little hands grab onto my face , or my absolute favorite is when she is super sleepy and falls asleep in my arms. I wish I could freeze those moments and go back to them over and over and over again. I don't think I relayed how thankful I am that surgery has been postponed to Thursday. Last week we were told to wait for the phone call to bring Elle into the hospital on Sunday for all the pre-op testing. Lee and I were on pins and needles all day long. Every time the phone rang, I jumped and my heart would start racing. I know I have been saying over and over again that I am ready for Elle's surgery - but truthfully - I'm scared out of my mind. I keep holding onto all those precious little moments because on the day of surgery, she's going to be on the operating room table and Lee and I are just going to be waiting for updates from the operating room. It's just so terrifying to think of being so helpless. I trust fully in the Lord's plans for our little girl but that doesn't discount the fact that I have a lump in my throat as I write this. I know the Lord has big plans for our little Elle. The last week I have really been overwhelmed with the amount of people our story has touched. I've shared Elle's story with perfect strangers and in every case the response is always the same - "well you seem to be dealing with everything so well." That's probably because I usually am beaming when I am talking about Elle - even the first 52 days in the hospital that were so tough to get through. My absolute joy when I share Elle's story can only come from my faith. Elle is our ministry. She is how we can share what trust in the Lord is like. What living a life based around our belief in Jesus Christ as the Lord and Savior can be like - even in the darkest times.

The past few days Lee and I have been loving on Elle as much as possible. That kid is constantly covered in kisses. Yesterday we received our gift from Aunt Shay! Another good reason we got bumped for surgery - now we can pack up Elle's sign for the hospital! I love that on the bottom it says "Dear God, please heal my heart. Love, Elle"

We went to physical therapy today and Elle was such a ham. She couldn't do anything today without sticking her tongue out. She is doing so much better at lifting her head - now she is reaching out with both hands to grab onto things - even when she is in the seated position. Usually, her arms are tucked up right next to her body. I think she kind of looks like a Tyrannosaurus Rex with her fat little legs and arms that she won't extend..a very cute t-rex! The last few times at therapy, she has been using her arms more. I received an amazing email from a mom that I truly admire. She said "you have been given an amazing opportunity to appreciate your child's growth and progress in a way that without CHARGE you could never have imagined." It's absolutely true! I am clapping and laughing and singing Elle praises with every little thing she does. I know how hard she is working and her progress is just so amazing!

Elle in her exersaucer on August 26, 2009 - not a happy camper (you can see her little t-rex arms!)

Elle in her exersaucer on September 22, 2009 - reaching for toys and actually enjoying herself!

We go in tomorrow for all the pre-op testing and then surgery will be on Thursday. This evening I am packing up all our stuff. I'm not a light packer - so Elle already has 3 bags packed (and she's going to be in only a diaper for a while after surgery)! I know tomorrow is going to be a long day but we have friends and family in the hospital already so it will be nice to be able to swing by their rooms and say hello. The bonds of having sick children are incredible. We might not all be going through the same thing but we all know the pain that our children are going through - that we're going through - but more importantly - we all know the pure joy and amazing love our children bring to our lives.