Wednesday, January 28, 2015

Must. Stop. Typing.

Greetings All!

Ahhh, what to say, what to say.

The day after my last blog post Amie and Shel went for a checkup at Mott, to see Dr. Robertson, Dr. Pittuch (the hospice), and Marsha (the nurse practitioner).  They sat down and talked with Shelley for a long time, and they ultimately said  (I’m paraphrasing here) that she still looks really good, all considering.  They said she could go on like this for weeks, if not months.

I was not there when they said this.

My brain nearly exploded when Shelley related this to me.  How in the hell could this be considered good?  We’re still above water?  Really?

But what they were really saying is that the end is going to look so absolutely terrible, so awful, that you have a long way to go until you find out what bad really is.

Now, that’s of course not what they were saying, as that would be incredibly unkind and not helpful.  Except that is exactly what they were saying in spirit.  I know that.  It’s just a gut-punch to hear it.

We slid several steps more towards that eventuality this week, as Amie has been vomiting much, much more this week.  She puked 6x on Tuesday, and literally couldn’t keep anything down.  She’s losing her ability to keep herself upright, and can’t sit at the table to do crafts much anymore.  We tried several work arounds this week, but the simple reality is that the act of keeping her torso and head upright and straight is such a huge energy suck that it is just not worth it for her.  She’s also sleeping more, moving less, and far more inconsolable.





On a terrific, and much more sunny side, Anya went to Special Days camp last week. Parents:  you know those moments where all your worries subside? When you really realize just what a good kid you have on your hand, forgetting all the things you want them to improve upon?

Bringing Anya to the bus for Special Days camp is just that moment.  



As we are driving up to the bus, she says to me that in past years, everyone has come out to put her on the bus.  Amie, Shelley, me…we all come to send her off and wish her well.  She said that having us all there to send her off was great, and not having it happen made her kind of sad….but that Mommy was where she needed to be, taking care of Amie.  To be able to step outside of yourself and your needs, and make a comment like that…  priceless.  It’s definitely one of those golden moments where you know that you’ve done alright.

On top of that, in her two previous trips, she’s always sat at the very front, and loved that.  As we walked on, these 4 younger girls were sitting in the first 4 seats across from each other.  She stopped, looked at them, looked at me, and then said quietly, “This is where I’ve always sat.”  I smiled, looked at her, and said that she was older now, and they were younger, and maybe they needed the seats more than her. She just smiled and sat in the next row.  The patience and acceptance of that is great.  



Of course, I take very little credit for any of that, I give it all to Shelley.  I’m the “rile the kids up” guy…the “poop and fart joke” guy, the “wrestle until someone gets hurt” guy.  I insert chaotic fun into things.  Shelley inserts the stuff of legend.  :)



Camp for Anya is this place of fun and escape, and something that is 100% hers.  She is protected, cherished, and never ever has to talk about cancer, or how she needs to calm down for her sister’s sake.  Ever.  It is such a great escape for her, 2x a year.  Love those people.  Right, Jen?


Shelley's parents came over today to spend time with Amie and Anya to make cookies with the girls.


Amie did her absolute best, but it was just way beyond what she had the energy for.  
As an aside, do y'all notice the new hat for Valentines Day?  :)


I want to write more, but I want to post this tonight. 

Must. Stop. Typing.

Night All.