Tuesday January 3, 2012

The days are dragging on, and while the end is near, near is a relative term...

Shannon continues to slip away from us, but it is slow and very difficult to watch. We have now added a pain medication patch to ensure that she has an even dosing of pain meds throughout the day to try and keep her comfortable. She was much less responsive today, eyes slightly open, mouth agape. I'm not sure how much she comprehends at this point. Sorry to be so graphic, but we've been honest here before, so why stop now ...

Dan and I talked today about how hard this is. That may seem silly to say - of course it's hard to watch your child die - but I mean, the actual "doing" - doing the things that need doing so that the end goes as smoothly as possible. Providing hospice, making funeral arrangements, etc...

Dan and I laughed today, too. Laughed at the territory that we have covered in our 19 years together, 17 of them married. Man, nothing prepares you for this, but we are doing all right. One of the tasks we did today was to go through old pictures for use in a memorial service. There are some wonderful memories tied to those pictures of our kids at their various stages.

We sometimes think that Shannon's illness turned her into the person we all have admired through these last 8 months since her diagnosis. But, truth is, she was that person a long time ago. We got a nice note today from Jamie Berry, whom both of our girls had for a first grade teacher. Mrs. Berry wrote us these words today about Shannon:

"She walked into my classroom and lit up the room with her positive energy and fantastic sense of humor. Your precious baby had such an aura even as a first grader. She is truly a gift ..."

That's what I want to remember. Not the image I see before me lying in a hospital bed, but the girl that Mrs. Berry described, the girl I saw in those photographs today. Like the day she came home from that first grade classroom, smiling from ear to ear, carrying a tiny plastic treasure box because she had lost a tooth at school. I'm going to try and remember that day ahead of this one ...