Just some thoughts...

Last night JR took Grace to the ER, at the recommendation of her doctor. She has had an unbreakable fever and considering that she just had a porta-catheter placed in her chest, the risk of infection is worrisome. She started antibiotics and was, thankfully, able to return home. But, this made us reflect-something we've been doing our fair share of lately. When will the worry ever subside? When will some sense of normalcy exist? When will we ever feel as though we can let our guard down? I think we're resigned to the fact that the only thing that will be reliable about this next 2 and a half years is that they will be unreliable. It is hard. It is hard to realize that we have absolutely no control over the situation, but what is even harder is to see how she suffers. Please don't misconstrue our intent. We have nothing but gratitude for all that has been done on our behalf, and most certainly we feel thankful that Grace is in remission. But, I don't think we ever knew what remission would look like. At least, at this point in her treatment. We can't begin to describe what it is to see our typically enthusiastic, spunky and wise little girl laying in bed for hours on end without the will, drive, or desire to do anything but sit. We didn't know the words "please mom and dad, please make it not hurt" could feel so entirely devastating. Or, how painful it is to comb through her hair tonight and pull out a fistful of hair. Or, to stare at the horrible rash all over her head and skin. Looking at her bruised and exhausted body makes us feel so helpless, even though we know that the circumstances could be so much worse-they still feel bad enough. We are trying to remain positive and to create a joyful atmosphere for the kids to feel less worry or pain. We know that in the end, we will grow stronger-that this is just the refiner's fire. So, please forgive our emotional overflow. Just a little ranting and raving to ease the excess in our heads...