Tuesday, March 23, 2010
I am sorry that I have been lacking on pictures. I feel like posting pictures would just make you more sad. He looks so weak and I almost feel bad for taking random pictures of him in his vulnerable, fragile state. Today we had to be transported again to radiation at LDS hospital. It is really hard to see him the way he is but I am now getting used to all of the stares as we wheel him down the hall. I try to imagine what other people are thinking, or what I would have said only a handful of months ago if I was watching a child like him. There are so many emotions that go through your mind when you think of your child being "that child". Today though, seemed a little easier as we were wheeling our way to the transport van with all glances on us. Is this what the "new normal" feels like? The anger is beginning to subside, for now at least, and I feel like I am in survival mode. WHAT DO I NEED TO DO TO TAKE CARE OF SPENCER? My body moves as fast as it can to get to where it needs to be. I am tired but so aware of him and even aware of the other kids while they are away from me. I am hoping that RSV and Flu season ends shortly so that they can be here more. I love it when our family is all together. Spencer misses them so much too. I am hoping that being around Belle and Gavs will help him heal. I think he will feel better being around them, making him whole. Family heals. I am so lucky to have such a wonderful one. Spence also had to have an ultrasound on his belly today because it is still causing him a lot of pain. They thought that stopping the tube feedings would help, but to no avail. They were worried about inflammation or infection. The ultrasound confirmed that gas and diarrhea are the culprit. Poor guy his little healing gut is full of trapped gas. The doctors of course were happy to hear that there are no other complications, and because his other labs look pretty normal we will most likely be able to go home tomorrow. Oh, sweet home! One of the doctors I talked to agreed with me that being home might actually make him feel better. Oh to be home! To be with my babies even if it is only for a few days until we come back for in patient chemo next week! Tomorrow I will learn how to keep him fed through his I.V. and all of that fun stuff. I think our home health nurses will come over as well and get us all set up with that. I wanted to tell you a quick story about Spence. When this all began I related the story of Job to him. If you are not familiar with the story of Job read it in the Bible! It's a great story. I told Spencer that Job was so righteous that Satan asked God if he could test him because he was sooo good, and he was granted permission. No matter what trials were given to Job he still loved the Lord and still kept his commandments. He lost his family, his home, his livelihood, and was struck with disease and he still remained faithful. In the end the Lord blessed him twice over and he lived a long life in happiness. Well I was telling Spence that God must really believe that he is so faithful that He has given him this special trial that he will overcome and then he started to cry. "Mom, I don't want to get as sick as that guy from the Bible". My first and only thought was how amazing this little boy is to not think that he already is as sick as Job, if not more sick. He and his faith blow me away and I am thankful that he is such a special little spirit and that I get to be his mom.
Posted by Gooches at 2:43 PM