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.


  1. Wow what a trial to have to go through! You don't know me but I am in your stake and was informed of through flyers at my daughters school and from people in my ward. My heart goes out to your family and cute little Spencer. I am following your blog and hope you don't mind. What a great mom you are I have just sobbed over some of your posts thinking of what you are going through. We are all praying for him and he is in my thoughts every day. Thanks for sharing him and his trials with us. I know we will never fully understand but know you are in our thoughts! Please contact me if you are in need of anything. I also have a blog it is www.seekingthewisemans.blogspot.com

  2. Thank you for sharing your journey with us. In doing so you allow for so many others to help carry your burden while you and and your family spiritual enrich our lives. I tear up everytime I read your words and already feel so connected with you and your family. Now what can I do for you next week? Meal, a Dr Pepper a hug whatever it is I am here. I can be to the hospital in no time flat I am up there most of the time anyway. Please don't hesitate to call 801-232-9144

  3. I live for your blog. I love to read it and be updated. Praying and thinking about your family everyday!!! I'm noticing my blessings more and more. Thank you for sharing this so we can read and be thankful for families and the simple trials some of us have. I pray hard for Spencer and have talked to my kids about him. We all hope he gets better soon. I remember when we worked together and you were prego with little spence! I can't believe time goes by so fast!