Beauty, wonder and awe swirl around us, along with the increasing horrors and cruelty.
You are quiet in your eyes. They are open, but they are still.
Sleep comes often. Taking you away from us. From the now. Where do you go?
Reading you aloud the words of the day. What do you hear?
What connects doesn’t endure.
This is a good thing. This is a bad thing.
You are alive. But you are not.
I want you alive. But I don’t.
Long days of sitting. Watching the light turn to dark.
TV glowing across the room.
Time has no real punctuation anymore.
Riding a perpetual wave between the loss and the gain.
Your hair has never turned gray.
Mine is turning every day with the exhausting unplayed out unknowns.
A shift may come soon. Or not.
Fear or relief. Grief roams the landscape.
Stability is just a concept we’re trying for now. Tomorrow could be the phone call.
All will change. For worse. For better. For mourning.
For now we sit. Not accomplishing much.
A lonely heaviness lingers in my chest.
Awestruck at the sunrise. Here’s hoping.
For what?
I just got an email from a friend who has just this week been diagnosed, and has no one who's as kind, patient, and loving as you are. Your mom is lucky. You're helping so many of us by writing about your experience.
Thank you so much for writing and sharing. I read this bedside by my sleeping mom. You captured so much in this piece!