Friday, September 18, 2009

9/18 Conversations, feeding tube, life ahead

A: Sometimes I get afraid and overwhelmed and I know fear is not a useful place to be
C: Not it's not.
A: You never seemed afraid of anything. Still don't.
C: No I'm not afraid.
A: Anything you can tell me to help with fear? I know fear is an illusion.
C: Well, it is an illusion and fear is false.
A: Yes it is. Fear is false. What is truth?
C: Truth is golll...gollll
A: Truth is?
C: Good. God.
A: Truth is God.
C: Yes.
A: How long have you known this?
C: Forever...
C: When you deal with this, it's not good.
A: When I have fear?
C: Yes, it's not good.
A: I know. It's not useful at all.,
C: No it's not.
A: Well I don't feel afraid now that we're talking it over.
C: Good.
A: I'm really not alone in all this, am I?
C: No you are not.
A: You're helping me.
C: Yes I am.

Speech Therapist: What do you do as Director of the Community Foundation
C: See if different people are willing to get involved in helping with various projects.
ST: What kinds of projects
C:Rrrrr, Mmm, Drrrrr, Mmmm
A: They built the new high school, the YMCA and lots of other great things to benefit the community.
ST: Wow. What other kinds of things do you do?
C: Raise money.
ST: How do you do that?
C: .....
ST: Do you do fundraisers?
C: Yes, some of that. Yes, fundraisers.
A: Make.... Ffff
C: Make phone calls. See if people are willing to partner with us dd..rrrr... in developing...

[I'm not doing justice to the exact conversation. There was a great deal of clarity and also several sentences lost to the apraxia/aphasia (inability to access right word or lip movement to form it.) We're finally getting the speech therapists to access areas of Chuck's true interest and engagement in addition to the other more rote exercises.]

And...drum roll... the feeding tube was removed tonight! Last vestige of foreign object, hardware or machine. (Just hope there's no infection. It was beginning to cause him pain, so they're testing it.) We're still on puree, but we'll be graduating soon.

Becky left today after being here for the week. We laughed so much, the three of us, and found fun in absolutely everything. I kept threatening to zip her up in the net bed with Chuck so she couldn't escape. Had a good cry after she left.

Stacey arrives late tonight and the job ahead is to get the house ready again for Chuck's triumphal return. When Chuck was first in ICU, we moved everything out of the master bedroom completely and I took Mandela's room down the hall so that family could make use of the house and so that we could get Chuck's jumble of clothing in better order. At the time, I didn't know if Chuck and I would ever enter that room as man and wife living under the same roof. (Many of you may not know that Chuck and I have never lived together. In all these years, we've never spent more than a few days a week together. We were just about to begin our life in the same house when the assault happened. I'm still completely in boxes in the garage.)

So, we've know a lot of happiness and serenity, just spending all this time together day to day, even with a TBI, even in hospitals, even with all the uncertainty and trauma. A week or so ago I said, "I think we're going to have a happy life." Chuck responded, "We're going to have fun, and lots to do, and many friends!"

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