Sunday, June 11, 2006


Robert's condition continues to improve, although we have a long way to go with this. Mostly, I feel frustrated with everything: doctors, physical therapists, drugs, disability equipment, etc. Everything. I think, as I said before just a few days ago, I'm getting weary of constantly having to reinvent the wheel as a parent. Live without any real roadmap. Pour my creativity into trying to interpret what my son is trying to tell us.

I ordered an overbed hospital-style table to mount the eyegaze communicator on, so that we can bring it downstairs and give Robert something else to do. I think that having it on something portable will really help all of us make some better use of it.

Still reading Cormac McCarthy's Blood Meridian. Not much of a story, but a feat of linguistic fireworks. I noted that the book is 23 chapters long plus an epilogue. At chapter 12, the meridian chapter, the characters hit the zenith of their "careers"--and it's all downhill after that.

Maybe in a couple of days I'll have something interesting to say about poetry or life. After a while, providing this extensive, hourly care for Robert: lifts, diaper changes, sponge baths, stretches, entertainment, backrubs, conversation, assisting with feedings and medications--after a while, this care just burns me out--it's not just the energy or the tedium or the long list of things that must be done--it's the emotional energy, the worrying about him, the worrying about the next thing that will go wrong--why he's crying now, what can I do about it--all of that really erodes me.

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