|Rob and Devon on the shores of Loch Ness|
"Hey, Candy Girl. You better move closer."
"Took you half-an-hour to get here."
"Yeah. Move closer."
It's 4:30 a.m. and Rob's overnight caregiver needs help. I have traveled from our upstairs bedroom where I had been sleeping to our family room to find Rob restless in the hospital bed. Since he has returned home I have not had a full night's sleep mostly because I first took care of him by myself and later because the night aides need my help to move him and now to change him. Each phase towards death results in new needs for all of us and the same persistent want.
Tonight I am Candy Girl. Yesterday, Rob asked his mother where the Queen went.
"She's taking the Prince to school."
"Oh that's good. She'll be back."
Even though Rob can only say my name at times when he is most vulnerable and feeling pain, he knows me.
There's an abundance of sadness here so thick and constant that I have little else to do but understand that I am mired in it and accept this. This acceptance is humbling. Yet alongside that pressing sadness, there is also something oddly beautiful. My husband in his movement towards another world is composing a new world in front of me. Now and then he invites me and others to enter that world. Now and then he demands entrance. And it's an amazing world--one in which Rob seems to be busy tinkering with things as he turns handles, adjusts levers, opens windows, opens doors, transforms the off-white blanket that covers him into a video screen so he can watch the game. Even as he edges towards death my husband is still rooting for the Giants.
Earlier this week a chaplain came to visit and she told me, "Don't let this disease cheat you of this time with him."
There's such wisdom in those words.