Wednesday, February 4, 2015

NOT THAT POST...we're not there yet.

first things first:  We’re not there yet.

Amie’s still alive, at least physically.  I thought it best to do an update, as that’s where my brain was, and if I have the words, why not let them spill.

My last post was on Saturday, and talked about how Amie was slipping away.   Well, she’s gone, and yet she isn’t.  She’s physically alive, but no longer responding to us much.  Yesterday, she told Shelley she loved her twice, and she gave me a few minor squeezes with her left hand.  I like to call those ‘hand hugs’.  I’m good like that.  

Today, she hasn’t really responded much, and just has the glassy ‘1000 yard stare’, where we aren’t really sure how to meet her needs. As Shelley said today, she’s trapped between this space where she doesn’t want to be agitating Amie with her presence and wants to let her rest…but then again doesn’t know if Amie is lonely and scared, lying in our bedroom by herself.  So we vacillate between hovering and cuddling, with leaving her alone.  Lacking communication, there’s no real way to know, so she does a lot of both.

For me, this has been a really, really rough week.  Much harder for me than any other week, and that’s a strange thing.  It seems like weeks like brain surgery should be much harder….but after each of the surgeries, and after each round of chemo, or blood transfusion, she was just Amie.  She was funny, she cracked jokes, she wanted snuggles, she asked for things.  She was a vibrant kid who shined like a beacon to others.  

But all of that is gone.

She’s just a shell of herself, hanging on.  And that’s just so damned hard for me to deal with on a daily basis, that the kid who was an epically passionate kid has descended into this place where she’s literally on pause.

Part of the reason I am having such a hard time with all of this is that I’m aware that my postitive memories are being sublimated by these new ones, and I’m sickened by the thought that this is what I’ve got as the last slide in my slide show (Kids, slides were these things we used to display pictures before we had digital, and the internet.  Ask your parents.)  I know we’ve documented things incredibly well, but damn it. damn it. damn it, I hate that these are my last images that are going to sit in my mind, and it’s not like I can help that process.

ok.  I’m going to stop that now, as I don’t want to go any further down that lane.

Anya has been amazing through all of this, as many of you have been asking.  She's fallen into reading suddenly, and has been reading at least a book a day for the last 2 weeks.  She's destroying the Magic Tree House series (I think she's done the first 20 books already), as well as the Junie B. Jones series.  She's still doing art projects all over the place too.  

Her classroom is the Narwhal classroom at Charyl Stockwell Academy, and is just such a healing sanctuary for her (Narwhal fo lyfe! Right Ms. Churchill and Ms. Simon?)

Shelley had a great (pinterest?) idea of doing some watercolor painting on snow, and crafting really cool snowscapes.  This is part of what Anya worked on for hours and hours last night.  If I can get more pix from Shel, I'll share them in the next blog.  So, so creative that little girl.

Shelley has finished her mission with the hearts, and as you can imagine when it comes to Shelley and crafts, they are amazing.  

She finished over 2000 of them, and probably has some stress to her arm from repetitive motion in doing all of that. 

I wanted to finish up with a video of Shelley singing Jingle Bells to Amie the other day.  SO. GOOD.  I’m crying the entire time I’m capturing this, by the way.  Amie LOVES Jingle Bells.

Shelley really wanted to cuddle Amie, and feel her close, at least one more time, so we moved her into the girl's bedroom to do that.  For those of you not intimately aware of my house layout, this is the chair I bought for Shelley to nurse Anya in, as she was pregnant with Anya in the summer of it's got a lot of memories.

As a last note, as I feel bad for just puking my emotions all over the internet with this, thanks for the consistently positive stream of messages and kindnesses that have been sent our way over the last weeks and months.  While we don’t respond to every one, we do read all of them.  We really appreciate it, and it’s always amazing knowing how many of you are with us on this grand (unwanted) adventure.