Wednesday, December 25, 2013

Far more Scrooge than Tiny Tim...

I'm having a problem blogging.

Y'all know this.  My regular updates have become sporadic....even sporadic might be overly generous, as it's come down to a once a month kinda thing as of late.

Here's the problem:  There's nothing really positive to say, at all.

In the early times, there was all this information that people wanted to know, and that in itself was positive.  The more we learned, the more we could grasp what we were battling with...the more we could resist the despair of it.

But we're not in that place anymore.  We've got all the information we could ever, ever want about brain cancer.  The initial treatment regimen worked...until it didn't.

So, here's the crux of my problem with blogging:  I don't want to depress anyone.

It's sometimes just easier to not say anything and live with the quiet misery of what it's like to have a kid puke up every single thing for 4 days straight , including all her medicine, while simultaneously shit herself raw at the same time.  For her to ask to be carried every time she moves because she's so physically weak from all the above.

So, when I let the above paragraph out into the world, I can see no real benefit to anyone.  People who care are only going to be sad reading it.  People's lives are not going to be added to in any tangible way knowing more about Amie's specific obstacles.

So I don't post.

Now, that's not to say that everything is negative.  By no means would that be true.  But we are in a profoundly and overwhelmingly bad place right now.  I'm much better at filling my own bucket than Shelley, and she's far more likely to sacrifice her own sanity/peacefulness for the good of others.  She's in a much more difficult place than I am, and could really use people's support...

With all of that being said, here's a few things from the past month:

I blasted all of this on FB, but for those few of you not on Facebook, Amie was selected as a recipient of the Eastern Airlines Silverliners, a charity group that brings children with major illnesses to the airport for a "trip to the North Pole".  She loved the crap out of it, and it was a tremendous thing to be a part of.

Christmas Eve sucked.  Puke, Puke, Diarrhea, Puke.

Amie was too sick to go to Grammie and Papa's place (Shel's parents).  So we sat, cuddled, slept, and held each other for the entire day. 

That in itself was nice, really nice honestly.  But the fact that she was so weak that she didn't have the ability to go see Grammie and Papa was just really hard as a parent.  Really hard.  

After a while, she asked to sit in my chair (camp chair), for a different experience.  For those of you who know us, you know that the kids are not huge TV watchers.  Amie watched at least 12 hours of TV on Christmas eve.

I took this picture as a true representation of my Christmas cheer.  Sorry.

I'll stop here, with a really nice pic of Amie.  
She was fresh out of the bath having just truly soiled everything around her. the end of all my bitching and moaning, know how I keep all my shit together?
Look at that picture.

Taking a deep breath and getting ready to keep going.  Night all.