Sitting here in our perpetually Christmas time living room not really feeling the Christmas cheer. Maybe it's the fact that I was woken up a few times last night by coughing, crying to go "potty" or just our alarm notifying us that it is time to give our leukemia daughter with the staph infection the IV antibiotics. Maybe it's the fact that it is almost Valentines Day and the only red things that we have in our house are the red mittens woven into the garland that drapes off the banister. Maybe it's the fact that Abby's legs being the size of small ladies wrists don't function the way they were meant to right now. Maybe it's that helpless pit in my stomach that seems to continually surface and sap away my strength as I watch my family walk this new life out in the same weak and stiff legged way as my daughter... every 10 joyful and perseverant steps followed by a head long face plant in the sand. Just not feeling the cheer you know?
I was watching "We Were Soldiers" the other night with a few other guys and the question came up as to who you related the most with in the movie. It being a movie about an out numbered army unit in Vietnam, I wished to related with one of the brave soldiers holding off the enemy. Or actually just any soldier, the ones that were cornered, or who went back to carry out a wounded friend. Some one in the battle, who has the option of fighting a noble but possibly deadly fight. But I didn't, I resonated with the wives, yup the wives. It may seem weird but let me tell you why. You see, these wives all had their husbands sent off to war. They had to stay at home with the kids, the bills, and the semi-constant knowledge that their husband may not come back. So they would clean, some would hang with friends, would just stare out the window, maybe longing for the days when their husband was outside playing with the kids. But I bet all of them, when they went to bed at night in an empty bed, engulfed by the silence and alone in the dark thought the same thing... What fight is he in right now? Is he going to be severely hurt? Will I lose my husband to this battle? For me though, it's not my husband, obviously... For me, it's my little girl that is fighting this fight.
Oh how I wish I could be in her place and fight this fight for her. I doubt I would do as good of a job though. After the month of treatment I would just want to be left alone and sleep, hiding from the world in bed in hopes that when I woke up it would all be gone. I would just be pissed, quite frankly, of my situation... but not her.
After a month of treatment she is as joy-filled as ever. Her smile quite often lights up the dark solemn spots in my own life. What faith of a child really. I keep thinking about what she is going to learn in this, but maybe it is what I am going to learn in this. I keep getting sad at her predicament when she isn't sad about it. I keep getting mad in ways and wondering why God allows this to happen to little 3 year old girls with so much life ahead of them... But she doesn't, she is as giggly as ever! I feeling like I should tell her that she should be a bit more depressed. Say something like, "For heavens sake Abby, you have a staph infection, you have a tube implanted in your chest so that you can get medicine (oh, that by the way is going to kill off all the good stuff in your body too), you can't walk very well any more and it may get worse before it gets better. You know you really should be mad about this! You have every right to." But does she? Do I? Do I have the right to put my warped view on this child’s life?
You know, the thing is, she doesn't know what is "suppose" to be. She probably just thinks that when you turn 3 years old, along with birthday presents comes an implant, weekly trips to the doctor, and leg weakness. For her that is all she knows. That is the faith that I want. I don't want the loss of my "how it is suppose to be" to control my life. I don't want to be like the ladies in the movie who try to busy themselves so that they can pretend that life is different than it is. I also don't want to live life starring out the window, wishing for a different day to come, for my "suppose to" to be reinstated. The reality is that Abby isn't off in a war by herself, she probably doesn't even feel like she is "fighting" anything. She's right here for us to enjoy weak-legged and all. Once again I am going to take a page from her book, actually a bunch of blank pages, pages of "I don't know what will happen and I'm fine with it being out of my control", those pages will have to replace my "suppose to be this way" pages and I pray that they will.
On that note, I think the Christmas decorations may have to come down today. We can't be stuck in the "December of Diagnosis" forever. As much as I like the lights, we're going to have to move on. I think I'll have my little girl cut out some valentines today, I think I need to learn how to redecorate from a child’s' perspective. Maybe, she can cut out a purple heart, one for her, she deserves it!
Thanks for coming along with us in our journey in this too, in the ups and downs, highs and lows, all of your comments and prayers are very special to us. Thank you.