Monday, September 23, 2013


Charlie's been home exactly a week now. I have to confess to having some rather extreme anxiety about is return, while at the same time being exceptionally happy about it.

Yes... finally sleeping in the same bed together... YAY!

But... what if something happens, and there aren't any nurses right there? We live an hour & a half from the hospital...

Yes... he can be outside, at his own home... YAY!

But... what if he falls??

That kind of shit.

He pushes himself hard, some days. Which is good... sometimes. Other times, not-so-much. Like the other day, when we went out to our place for an afternoon visit --we're still staying at his mom's home down the road for the next 3 to 5 months-- I went to put the dogs in the yard, turn around, and he's coming down the stairs on the deck. Backwards. Without his walker (it was standing at the top of the stairs). Leading with the wrong leg (As the saying goes "Good goes to heaven, bad goes to hell" meaning, when going up the stairs, you lead with your good leg, going down the stairs, you lead with your bad leg)...while he DID make it down safely (despite a chastising from me) the doctors tell you to do these things for a reason... they didn't just make it all up.

Speaking of pushing one's self, today he starts back to therapy. Three days a week in Nashvegas. Up this morning at 5am, helping him put his pants on, tie his shoes. Normally, he can do these things himself, but he's stiffer in the morning (heads out of the gutters, people), a bit more uncoordinated, and has a difficult time moving/doing the things that require more intricate movements. Like putting on pants.

Helping him with that was a bittersweet moment. I felt both the full extent of my love for this wonderful man, and anger at the universe for...well, for all of it. For using this event to remind me of how deep our love goes.

There are beautiful moments when that "couple's telepathy" thing comes into play, when I can guess what he's trying to say. When our friends are over, and there's a lot of conversation happening, and I see the look on his face as he starts to get overwhelmed, and I have to quietly say/remind them "too much right now" and he calms down, the look on his face relaxes back into a smile.

I have to remind myself of "too much" as well, mind you. Yesterday, he asked for his pen and paper (we use drawing a lot to get things across, since he doesn't recall the alphabet yet)... we've been doing word prompts, where I point to an object, and have him repeat its name with me... so, anyways, he "asked" for is pen and paper, and as I passed him the pen, I tried to have him say "pen."  He said "no" a couple of times, and I pushed him.... and then I saw that saying the word "pen" had driven from his mind what it was that *he* had wanted to get across. That it was now gone, the space occupied by the word "pen."

And for a moment, I hated myself.

Then I remembered that none of us was given a guide book for this, that we're all figuring it out together, and hating myself was stupid.

1 comment:

  1. aww..
    keep writing, Judah. This will be a book later, or a monument to your combined success.