Tonight in her quiet moaning voice Clara asked for Kate to come lay by her on the couch. I don't know if it's possible for a picture to overwhelm me with gratitude while at the same time breaking my heart, but that's what it does for me. She wanted her sister close. Of course it caused me to wonder if she knows what tomorrow brings.
Clara has been blind for a couple weeks. The only normal thing she has left is food.
She hasn't been sleeping much lately so we have become short order cooks and baggie fillers at all hours of the day. But the thing is, she doesn't eat any of it. At least not much of it.
It's tiring and exhausting and frustrating. We know it's nothing compared to what she is going through.
All we can do is imagine. And cry. Lots of crying.
We've prepared ourselves to say goodbye more times than I can remember anymore.
Her heart always bounces back. And her breathing regulates. On Friday afternoon her heart rate was 48. By 9pm on Friday night it was back up to 120. Her will is so strong!
One of these days she is not going to bounce back. Her spirit will no longer be in her broken body.
Along with the overwhelming grief I anticipate a great sense of relief will also wave through us.
We belong to that group of parents now who have helplessly watched their child suffer physical agony and we won't be the last. I spend my days thinking and planning what I will do for those parents who will one day experience what we are.
I just hope some good may come of Clara's trial and our experience. I have been forever changed and truly believe it has been for my good. Clara has been an amazing teacher.