“If we become increasingly humble about how little we know, we may be more eager to search.”  John Templeton

Oh! This week, this weekend. I think its been the hardest one for me yet.

I am totally fine about Maki having a fun slumber party, remembering to pay my bills, getting the kids to school more-or-less on time, making an unbalanced dinner, applying mascara, finishing photos for clients, whatever makes life feel normal is good. Or if I’m honest: whatever makes me feel in some control (and/or even helpful) is good. I had a photo client cancel a shoot because she was feeling bad for me, and I thought…ok, I can see why you don’t trust me right now, I probably do look crazy; but truthfully,  most of these projects give me a sense of normalcy, which may be worth more than the money earned.

So…it’s been a tough week. I think I said that before.  Vernon has had some good days, which made me fall in love again with him: his amplified self, his humor, his British charm, and his  “I-sound-and-look-like-an-old-man-but-really-I’m-more-modern-than-anyone-you-know” -ness. (That may or may not be a new thing, I can’t remember.)

Here is a sweet, sleeping Vernon. Isn’t he the most gorgeous thing? Lately he has been a bit more sedated so he doesn’t crawl out of his room.  I agreed at first that this was probably a smart thing, for his own protection…especially as I can’t be there for 12 hours a day to make sure he doesn’t try to escape.  But to see him like this up till noon today, it broke my heart.  I know his agitation is annoying to the staff, but he needs to be ready to do physical therapy…when it is approved, that is.  And he was in no state for PT this morning… I was happy to hear it wasn’t arranged till after Dialysis this afternoon.  None of this feels right.

I’m so confused lately.  My gut tells me that something is wrong here. I feel like we have been dropped into Mexico (which is an interesting country in itself, filled with beautiful people…but it has completely different rules and a different language, even than the version many of us took three years of in high school.) The medical world seems to only be understood by people in the field and even then, most of them seem to just shrug when I ask questions…because it keeps changing. It’s a business.

How do I learn the language and who do I find that can coyote us back to the right place?  This is an analogy, by the way. Everyone here speaks English to me. Its just that I know so little of the medical world. Who do I learn the language from?  Suddenly we are in the land of bureaucracy and background checks and signatures. When Vernon was fighting for life, it was amazing…I have no complaints.  I do know that  we have been saved some 4-million dollars (WHAT? is that a number I ever thought I would throw around so casually?) through medical insurance. I can’t be more grateful…but now that he is surviving, now that he is less acute. I feel that we have been dropped by helicopter into a wilderness with smiling people who mean well but have their hands tied behind them.

So you can see that by ten days into this plan, still not assured that Vernon has physical or speech therapy (though I am told over and over again that our insurance is the best one for our situation…) I’m a little frustrated.  My pastor told me early on in this journey that I should trust my gut…that that is where God speaks to me. I feel that my gut was left behind somewhere and I’m trying to find it again. Has God left me? I don’t think so. So why do I feel this way?  Do I have the energy to figure this out. Not really.

But that doesn’t matter. No one else is going to. So…I have to learn Spanish and get moving.

This post is getting a little long.  And I haven’t even said what I thought I would.  Time to turn it around.

At least he looks peaceful (at noon!) I know that is what I want for him in the nighttime, but not at 11 am, when I’ve got two kids to school, made three breakfasts and a lunch, paid some bills, worked out (on a luxury-day), and driven 45 minutes just to see him. This is not on.

I have more I wanted to record from this weekend, but I can feel this getting long already…

Like I said before, it was a tough weekend.  I had two friends visit yesterday. The first, when she asked me, after seeing me get detached and weepy: “Have you been taking your medication? (I’ve been on antidepressants for 13 years, give or take some months,) I shouted at her: “DON’T TELL ME TO TAKE MY MEDICATION!”

Oh dear. Even as I said it, the adult in me shrunk back in embarrassment.  If ever there was a moment for the candid camera to be poised. That sounds exactly what someone who hasn’t been taking medication would say. Oops. Crazy alert!

Even though I  knew better, I continued: “Don’t tell me how important it is to take care of myself! I’m so tired of people telling me to take care of myself! No one even knows what they are talking about. Give it a rest!”

Yes, I’m the Crazy Friend, apparently. Fortunately she didn’t disown me but came back later with a bottle of wine….and also a days of the week ‘vitamin’ pack to tuck into my handbag.

To be continued…