8/27 A.M. Chuck and P.M. Chuck

A.M. Chuck is all smiles and laughter, communication and cooperation.
P.M. Chuck is dogged, serious, tired, blank-faced and not entirely willing.

People who bring energy, joy and love bring out the A.M. Chuck, even at night. There was a nurse we hadn't seen before who talked in a loud, bossy way while treating Chuck like a 3 year old. She got P.M. Chuck and it was early morning. Chuck cast me a look of pure misery and shook his head. I rolled my eyes. Sometimes he is just plain tired and non-communicative, but he really comes out for people who are genuinely present to him. When the doctors come by, he sits up, smiles, speaks very clearly. Lauren and Allie had him beaming and playing. Stacey got to be part of his major laughing thing he does trying to get his therapy exercises right. His default is BIG FUN.

Here's how it is for Chuck with talking:
Ever since he started speaking over a week ago, he has tried over and over to say this one thing to me. "My leg....zzz...trrrr......" The first time, I asked like 20 questions about his leg. Does it hurt? Your leg what? Is your leg bothering you? Finally I asked, "Are you trying to talk about your leg?" He closed his eyes and shook his head. "No."

Yesterday, five times in a row "My... Leg......is......trrr rrrr." He really worked to have himself understood, slowed down. Tried again. Finally gave up.

Today in speech therapy
C: My... leg...gij
ST: Language?
C: Language.
ST: Your language?
C: My... language... is ....terrible!

So my point is, at his earliest moments of speech a short time ago, he was making an observation and an analysis.

Here's one example of what it's like physically:
He uses his weaker right hand to reach up and push the elevator button. It takes a great effort, perhaps 10-15 seconds for him to get his finger up to the right spot and push.

So there's Chuck in there, asking his body to do things and it's not cooperating exactly the way it used to (yet), attempting to express fully-formed observations but his words don't cooperate (yet). But it's Chuck. Chuck's humor, intelligence, tenacity, hope, love, effort, awareness, and understanding of the situation. Chuck knows who he is and where he is and who is who.

And... THE TRACH IS OUT! Gone. Bye bye. Toodles to the trach.

I had to leave this morning to spend the day tending to paperwork and a meeting and didn't get back until six. He's sleeping so deeply, I keep checking to make sure he's breathing.

I'm posting from a wireless McDonald's down the street from the hospital. Back to schlepping around two briefcases and now three phones: mine, Chuck's and the Sandstrom AT&T phone so I can talk free to Sandstroms. Dinner tonight was tomatoes and a yam from a roadside stand and a Happy Meal. Had a dynamite visit with Olivia. Am I allowed to admit that I'm enjoying myself a lot these days when I'm not freaking out or weeping? You see, I get to hang out with A.M. Chuck, and there's just no happier thing for me on the planet, except for maybe a good book and a tree with low, roomy branches to read it in.