On Tuesday I coordinated a pick up and drop off schedule that makes international travel seem easy. Despite having a daughter who is laying in a hospital bed fighting for her life every day, life continues to go on around us. It just dose, and some days, well... it just hurts that it does.
I have yet to figure out how to be in two, three, or even better four places at once. When I do I'll let you know:). I had a heart felt conversation with our palliative care counselor as we ran into one another in the hall. I shared with him how God-awful difficult and painful it is for me to leave Lucy so that I can do any one of the millions of other things that I need to do for our family, our three other kiddos. If I am being perfectly honest here, I am not good when I am not near or around Lucy, I'm just not! I think I do a pretty good job of keeping my feelings to myself all in an effort to be able to do all that I have to do, but if you could visibly see all of the pain and the worry that flood my veins and weighs heavy on my heart when I am not with her you would cry with me, for me. The flip side of all of this is that I feel a tremendous amount of guilt for my other kids. Guilt that even when I am physically there with them, if Lucy is not with us then neither am I entirely. Our counselor very lovingly shared with me his thoughts on this dilemma, "when I can't be in two places at once, I find that I have to try very hard to just be present with where I am". My sentiments exactly! At times it can be very emotionally and physically exhausting for me to try and be present in the moments when I am not with Lucy.
Drew and I attended an orientation meeting for families of students entering middle school on Tuesday night...yes, gulp, middle school. As we sat and listened to the principal talk about the transition to middle school and how in two years our kids are going leave middle school a different person from when they enter, I leaned over and whispered in Drew's ear, "This is so surreal! Are we really old enough to be the parents of a middle schooler?". Drew sweetly whispered back to me, "I am, but you're not babe ;)".
Can't they just stay little, that was the thought running through my head as I was driving back to the hospital after leaving the meeting. The tears, they just flowed. Nights like these are reminders of all that our kids have been through and need to go through in order to grow up, naturally my heart and my mind wandered and thoughts of Lucy came flooding in... I think of how very different her growing up process looks. It hurts, oh God it hurts.
Decisions about life and death are everyday conversations in our life. I really don't know how to live any other way anymore.
***A quick update on today, the cholangiogram showed NO leaks, this is good! Her incision site is still healing and no doubt needs more time to heal. I will write more about this tomorrow. I am waiting to discuss some things with the good doc in the morning..