Not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid. (John 14:27)
This has truly been a day filled with peace. The Comforter is near. I don't know why, with my heart so broken that I can still breath or function, but I am. And really, I do know. It is through the power and gift of grace that the Atonement offers us on a daily basis. The Atonement was not just a sacrifice for sin. Our Savior went the extra mile to offer us his grace and love to utilize during times like this. Oh how we need that. I am so frightened to go these next steps down this very hard sad journey, but I know that we are not alone in our travels. The Savior is beside us, caring and trying to provide the peace, power, love, comfort, everything that we need. It is the only way this will not crush my heart to pieces.
I was able to run over to the first few minutes of our Young Women activity. One of the ladies that used to live in our neighborhood came and spoke to the girls and their moms. I was so excited to see her and hear her speak. She is a dynamic lady. I was sad that I wasn't able to stay, but everyone said she was amazing. When I got home our Pediatrician came to the house to check on sweet Tatum and to answer our questions about what comes next. People don't believe all of the things that he and his practitioners and their amazing staff have done for us. They are truly like family to us. For some reason after he came I felt better and more peaceful. He had some answers, but not all, because no one does at this point. He assured us that the body releases natural anesthetics to help with pain when your body goes into liver failure. That was probably our biggest concern. We just don't want Tates to be in pain.
Tatum's night was alright. She required a little suctioning here and there, nothing out of the ordinary. The morning was pretty quiet. The boys went to school today and the girls decided to stay home. It is the last week of school so we have just been letting them go or stay home, whatever they wanted to do since the last week of school is pretty much worthless. I would have let them stay home for the last three weeks if it were up to me. Surprisingly they all usually want to go to school! I had 35 absences in one semester when I was a junior in High School, so maybe I am not the person who should be in charge of helping them make decisions about their schooling:) In my defense, I had just got my license and I lived 20 minutes from the beach. Do you see what I was up against?
We had a pretty steady stream of people dropping by and visiting. Tatum had some pretty good awake time. Whenever her eyes are open I want to be right there with her so that she knows we are there and so I can talk to her and because I don't know if it is the last time that I will be able to see into her soul. It makes me sick to think about never being able to see her eyes open again. Ugghh.
Always available to provide comic relief or have a tantrum to remind us that life is going to go on, miss Hilary Jane Walker. She has no idea the burden that is hers. She is going to be the light that leads us out of our darkness. She has a very difficult task ahead of her, but I am pretty sure she is up to the challenge. Her spirit is gynormous!
Later in the afternoon I had a few hours where I just got to sit and hold Tatum. It is my favorite part of the day. I feel selfish because for her to move at all it is uncomfortable because of the swelling in her belly. I have gotten pretty good at moving her to my lap in a very fluid quick motion and once I get her comfortable she seems fine. I don't know if I can give up holding her. The other thing that is so painful is to change her diaper. She is so uncomfortable if she lays on her back and when I lift her legs to wipe her or put the diaper under her it pushes on her tummy and so she winces or cries. Today I sobbed every time I had to change her. It absolutely breaks my heart that I cannot spare her of certain aspects of this hideous disease. Lance was helping me change her this afternoon and that seemed to help. It is such a sacred responsibility to get to take care of her little broken body. I just hope that she knows that we would do anything to take away these awful parts that she is having to endure. I know that Heavenly Father will not allow her to experience anything that she is not supposed to. I am also sure that she has such a greater understanding of her mission while here in mortality than I do. I don't think she feels cheated that her life is going to be shorter than most. I feel the calmness and reverence and pure peace that exudes from her. She is enduring to the end just like she knew she would and could. Teaching us all along the way. We are so lucky to have her in our family forever.