I think all of the 'work' that goes into planning for Christmas was a good thing for me. It takes time to pick the perfect gift for people. To plan a day that can be joyous and fill everyone's needs. Although it is harder as the boys grow older to make the holiday eventful and fun and even harder when we are away from the extended family, the distraction of planning was good. I think everyone feels somewhat of a let down after Christmas. The months of planning, the stores being ready for Christmas since before Halloween and after one morning it is over. Such a change even with shoppers....those picking up last minute stocking stuffers on Christmas Eve are very different people returning gifts on the 26th. Reality comes back on the 26th. My reality has hit hard. The moment I stopped moving the reality and fear came back in. I was able while James and Liz were here to keep my Christmas spirit, to let my kids have a nice holiday. James and Liz are gone, Wesley is at work, Joshua is spending the night with a friend, William is playing a video game and Tracy is in bed. I thought that a few moments of quiet would be a good thing, but I was wrong. I feel frozen, terrified, angry, devastated, disappointed and oh so very tired.
So tomorrow we have to re-focus. We have to get another plan. Any plan. We can pull through one more time. We have been told that if this is GVHD it could just burn itself out. And last week we had hope that it could be happening. These past few days however Tracy loses more mobility and strength almost visibly. I have to watch helplessly as Tracy loses his desire to continue the fight, loses his desire to try and get back to where we were last week and feel the potential we felt he had. Surely God still has a plan? One that would include a quality of life or something to balance out all that he endures - that we endure. Surely things can get better. Tracy has battled chronic illness now for 12 years. He has had 6 different chemotherapy's, the stem cell transplant and now he suffers from the effects of the life saving therapies. How much more can I expect him to take? Or are now Tracy and my prayers very different and to relieve Tracy's pain will be just the beginning of mine?
And it's not just us. I hate going to the hospital. There we have to see so many other families also fighting, equally traumatized and in crisis. How can this be? So many other people also going through what can only be described as torture. How can the cure that people are praying for turn out to also be a life-threatening disease? I hate seeing the parents of children who are suffering the way Tracy is. Those parents are the walking wounded and you can see how hurt they are in their eyes. You can see their pain and how much they wish to take on their child's suffering. How can any of this make sense?
I need to figure out how to get up and do this again tomorrow. How to get Tracy to want to try 'one more time'. I need to figure out how to be positive. Maybe get our team to look for different options or look for different angles. I need some energy to be able to maintain some balance between immersion in medical stuff and being a mother who is not distracted. I need to get some energy, a new plan and a reason to be hopeful.
