Saturday, April 26, 2008
Not very nice, I know.
How would I like it if on my very worst, of worst days, someone decided to post a picture of me for all the world to see? We are not meaning to be cruel, we promise. Caitlin and I were trying our best to interact with the little princess. Trying to no avail to distract her from her constant state of agitation. However, by the looks of the first photo you can tell we weren't doing a very stellar job. Caitlin had the camera near by in case we were able to catch a glimpse of a smile or two. Instead she captured photo number one. A few moments later big sister was able to calm" Zoe muffin". ( Caitlin's personal little nickname for Zoey!) So I moved quickly for fear the moment would pass and I caught, picture number two. Zoey probably resembles photo number one 90 % of the time, since beginning ACTH. We prefer the Zoey we find the other 10% of the time and I know for sure Zoey feels much better when photo two inhabits her being. Today was a rough day. She was really "off". Even in a different way then these last few weeks of ATCH. I think this course of treatment is beginning to take a toll on her tiny body. The sleep deprivation is beginning to catch up. How could it not? She went from sleeping 15 hours a day in a 24 hour period, to maybe 5 hours if she is lucky. Even those I do not believe to be restful hours either. My heart yearns to bring her back to her natural state. I feel often she has spent so much of this first year of life in such a fight, a battle. She has always emerged victorious and I am sure she will prevail in true Zoey form in this one too. It is the road to get there, that I wish could have been kinder. She is a courageous little one and on days like today I once again stand in awe of what one tiny soul is capable of conquering. So, one day I will apologize to my little love for my lack of loyalty during such a momentous task that is taking all she's got to complete. I am proud beyond words of this child and that too I will share with her each and every day of her life.