Why am I still awake?

I often find myself asking this question. I am really, really tired, but sleep does not come. I would like to say that Ash is sleeping on the bed behind me, but that is not really true. Her replacements ended about an hour ago and when the pump alarmed she did too. She has been awake rubbing her little eyes, scratching her head, and it looks to me like she is also wondering, "Why I am still awake."

Dave will arrive in Omaha in about 6 more hours. I have thought a lot about his arrival tonight. I am so thankful he is going to be here with us for a few days, but at the same time knowing he is coming alone is difficult for me. I miss Blake and Al desperately and my heart hurts knowing that without God softening hearts, moving in mighty ways inside Ashley Kate's body, and basically giving us a Christmas miracle that I will not see them until they arrive here in Omaha for Christmas. Asking them to return here for another holiday seem so unfair to me. My heart was holding onto big, big plans for the holidays this year. Letting go of them has been a struggle. Dave and I will be working out the details of trying to hang onto our big Christmas surprise for Blake and Allie. We are going to see what parts of it we can still make happen and what parts of it we will have to let go of because I am not home to help complete it. We have a lot of planning and rearranging to do during this visit. I was really looking forward to celebrating Christmas for the first time with Ash in our home. I know some have encouraged me to "get over it", but its not that easy. God gave me this personality and a big part of me is tradition, family, memory making, and holidays. I lay awake almost every night thinking of ways to make it a more personal Christmas for the kids. Last year we basically gave the children new wallets with money inside of them because flying home with Christmas gifts was going to be too difficult. I really don't want to have to do that again. If we can still pull off their Christmas surprise then they will see it before coming to Omaha and will be able to enjoy it once they return. I think it will bless them and make their adolescent years very, very special. We'll just have to try to make it happen without mom.

I had hoped for Ash's bowel to wake up, kick in, and perform its own little miracle today. It didn't happen. Today's appointment is not going to bring us the news we were hoping for. Her output has been very, very high the entire week and no moves have been made on her feeding pump or TPN pump since Sunday. Each day I receive a phone call from the dietitian asking if I have been able to stop Ash's TPN. Each day I say, "No, not yet." I fully expect them to make us take a few steps backwards today. I am trying to prepare myself for the disappointment that may come. This such a long, long journey. Restoration is hard to come by after rejection. That is what I am learning.

So where is the blessing? I ask myself this question and it doesn't take long to answer it. Everywhere I look is my answer. Sure my heart is sad and lots and lots of tears fall from my eyes, but I laugh a lot too. I smile when I see Ashley Kate all sprawled out in the middle of the big bed forcing me to curl up on the small one. She is absolutely spoiled and I love that I get to do that. She just likes my bed more than her pack and play and the little bed is not big enough to safely lay out all of the tubing and pumps. This lands her little 2 year old body in the very middle of the big bed. Perhaps this is why I am having a hard time sleeping(I might add that the little pickle is now snoring behind me in MY bed). Her life is a blessing. We may be spending the holidays at the hospital for the third year in a row, but she is still with us and that is a blessing. I know many, many families who will be without their sweet children this holiday season and I am know that is far more difficult than what I am experiencing. I think of them so often. Her organs are a blessing. Without them we would be without her and I can't imagine the pain of not being able to even try. Our last year with her has been a blessing. We were given time and when you are faced with losing a child time becomes very, very precious. Making it out of the hospital and into this room is a blessing. It is peaceful and quiet. It is private. It is "ours" and it allows us to open its door to only those we choose. When staying in a hospital you have NO choice as to who or how many come through that door and what times of the day or night. When our door opens we now know that it opens to kind, friendly faces who have chosen to come visit. What a blessed feeling that is. In just a few more hours we will get to open that door to Dave and I am getting really, really excited about that! That is a blessing!

Although it as been a tough couple of weeks God has still been so very good to our little family. He continues to give us strength on the days when we have none. He continues to comfort and heal our hearts when they have been injured or disappointed. He continues to provide friends and their support to us in the very moments that we need them most. He is good. He loves us so very much, and He is working in Ashley's life and mine. He is God and He is near.

Again, I ask myself, "Why am I still awake?" She is sleeping and I think I should probably try to sleep a little myself. Morning labs and meds are gong to show up all too early if I don't lay down for a while. Goodnight guys(or I guess I should say good morning). Take care, Trish