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.

4 comments:

Dawson said...

what a precious soul she is. We will continue our prayers for her especially while on ACTH. You guys are doing an AMAZING job. Thanks for sharing her with all of us!!!

Ian Marrey said...

That 'peace sign' adorning Zoey's dress seems so at odds with the anger up top - jeez, I've seen a face like that too often in the past few weeks, quite often when I'm looking in the mirror.

It feels strange running this parallel journey with you - knowing that someone somewhere is having the same stuff going through their heads and hearts. As always, we're thinking of you all.

Ian

Reagan Leigh said...

That's a face we have seen often with Reagan...unfortunately that's before, during, and after the ACTH! At least you can look forward to her sweet disposition and regular sleep patterns returning once she's off the dreaded ACTH. Take care and know...we feel your pain!!!

Lindsay said...

Wow, I haven't cried as hard as I did during and after reading Soeren Palumbo's speech. Thank you so much for making it available, I'm going to send it to all of my friends and family. Hope to see you guys Tues or Fri.