This picture speaks a thousand words. Look at that face and I'm sure you can imagine the hearts of her mommy and daddy. We are SO thankful to have her in our lives. She has an amazing will to live and as I look into those eyes each and every decision we have ever been forced to make for this little girl are reaffirmed in our hearts. She is worth it. A thousand times worth it.
We do not look forward to what lies ahead for her. Its not what we had hoped or ever really thought about, but we can do nothing but push on toward the goal of allowing this child to grow up. When I look at this face my heart aches over the knowledge of what we will sacrifice in order to grab onto the chance of seeing her come back and live again. She fought hard to get to this place today and taking it from her with the idea of giving it to her longer is so very difficult. I wouldn't wish this on anyone. There are no words to even convey the heaviness of these decisions. We just keep waking up, living life with our little girl, and pushing on toward the goal. Our desire is to give her life. The place she sits in at this time is fragile, short, and so very temporary. Its deceptive. You see her today and its easy to assume shes fine. Truth is she can't go on like this. It won't last. It can slip away in a moment. At any moment. If I could keep her like this, with that smile, and that little twinkle in her eyes then I assure you I would NEVER take her back. NEVER. It breaks my heart to know that I can't. We are going back. In a few weeks we are going back to be told if they will transplant or wont transplant.
The week of December 27th-31st will be one of the most difficult we have ever lived. Either way the team decides to proceed will be hard to swallow. If they are able to list her then our lives will be transformed back into living minute by minute(literally). If they are unable to figure out a way to transplant her then Dave and I will be forced to face the finality of her remaining days. I don't look forward to the re-evaluation. Its scares me. It all scares me.
I'm hopeful that God has some big, amazing, miraculous plan in store for our family. Its all that I can hang onto as we approach the dates. Its what we pray for. Miracles. After all we've seen Him give them to us before. Just scroll up to that picture and think back to where she lay in the months of July and August. She's a miracle. This Thanksgiving holiday was a miracle for our family. A beautiful, miraculous, day. Hope yours was too.