Lighter

October 18, 2012
The entries written by me are the ones triggering painful memories. Now I feel the real pain welling up, but also the poignant recollections of his awakening. The stages he went through, returning like an infant. Right before he began to awaken I dreamed I gave birth to him again. We were alone in a darkened room and he crawled onto my belly. It was like an underwater birth, a continuation of my visions of him way below the surface, hovering, floating waiting till it was time.

Thursday, 18 October 2001
7:35 am Quiet night with Dave. Heartrate around 100.
8:54 am Mom spent most of the hour with Brian. Waking up a bit. Nurse Penny agrees he's more responsive than she's seen. Still turning away from suction. Heartrate 100-112, depending on stimuli. Eyes open a bit. looking at me. Slight grimace when swallowing Dr. Fennel with him; will consult afterwards. Says EEG results 'not real good". Linda and Marshall here. MK called this morning. Jamie called last night. ??Fennel said EEG looked worse, but made no sense in light of Brian's increased responses. Nurse and Fennel say Brian appears "lighter". Everyone noticing changes. He lifted right arm all the way back over his head last night. Still "wait and see". PEG tube tomorrow or Saturday probably, trach on Monday. Almost no sedation yesterday : 3 mg MS (morphine) in afternoon, another tiny bit last night.
8:50 pm Marc Likens is with Brian. Marshall and Kellie just left. Mom is here. Brian is heavily (?) sedated but fighting it. Been coughing and the nurse and RT (respiratory therapist) have been trying to clear him. Wears him out. Alana and David visited; Brian's eyes open and heartrate at 81 when they left the room. Thom (Little) and Laurel (Hansen) called. Jessica Ericson visited, but didn't see Brian. Chaplain Norm is working with us (very mellow Methodist). PEG goes in tomorrow morning at 10 am.
(Thom is a dear musician friend of ours. Laurel has known Brian since he was born. I met Norm through PFLAG, then discovered he was the chaplain at the hospital)
12:30 am (10-19-01) 2 1/2 hours with Brian. Eyes half open most of the time. He is starting to blink. No startle reflex tonight - morphine? Very relaxed. 40% O2; 2 assisted breaths per minute. Heartrate in the 90s, 90-96. Opened his eyes wide when group of people were singing "Happy Birthday". Almost seemed to be gazing past me at the posters and pictures on the wall. Dave there for the night, as usual. Marc is staying the night, as well. Rosemary has returned and Linda left. Merrikat and Terry will return Saturday morning. (my sister and brother-in-law)

I remember that moment with the singing very clearly. A patient in a nearby room had a birthday and when Brian heard the singing his eyes got very wide. He definitely heard it and it sparked some awareness. It was a moment of clarity. I can also still see him gazing past me at the wall. I remember stepping aside to let him see, wondering if the pictures were recognizable to him. we had no idea how well he could see. It was clear that he was directing his gaze.  
Lighter. Yes, that's the word. Buoyant. Surfacing.