Tuesday, January 20, 2015

“She looks so good!”

Greetings All,

Been wanting to write a blog post for a few days now, and haven’t quite had the critical momentum to put my thoughts in order to make it happen.  

I’ve been thinking all day about a common response people have made about Amie all throughout her journey:

“She looks so good!”

This is usually exclaimed in response to telling someone new that she had brain cancer. It’s usually bookended by, “No Way!” and “I would never have known!”.  We usually take these comments with a grain of salt, because like many other things, they’re incredibly well-intentioned, but ultimately not helpful.

Yes, she has had the incredible luck to look really good for most of the time she’s been in treatment.  She continued to eat enough that she never needed a feeding tube, either through her abdomen or her nose.  Her scars were hid by her hair, or hats, quite easily.  She lost weight, but never so much to cause alarm.  She got pale, but never so pale that it freaked people out.  Overall, she’s looked far more like a healthy kid than a sick kid.  We’ve been lucky, if you can call the external looks “lucky”.  I’m not sure I’d use that term.

Which makes me think, if you will pardon my wandering mind, how hard it must be for kids with depression, in that the things that they are feeling and experiencing are invisible.  People look at them and only see the external, and wonder “What the heck is wrong with that kid?  Shake it off.”  It’s brutal in a way that is extra hard, in that they don’t have the benefit of having an external manifestation of their illness to give credence to the fact that they are sick.  Not going anywhere with this, just postulating.

Well, this week, things have been sliding quite quickly, and dramatically.



Here’s the progression for the last 4 days.

What we’re seeing is several things:
  • Her right eye is misaligned quite badly, and off to the right.
  • Her eyes are both overly dilated.
  • Her right eye is dilated more than her left.
  • Her right eye seems to be bulging a bit.

Internally, we’re also seeing a few things:
  • Her short term memory is dramatically decreasing.
  • She’s becoming more sensitive to smells.
  • She’s no longer interested in playing with Anya most of the time, only in parallel play.
  • We talked to hospice when they came on Monday, and they said that she’s exhibiting signs of what they would call dementia in an older adult, which we agree with.
Here's what that looks like:



So what’s that mean for everyone else?

Things are progressing.  Truly and really progressing towards the end that I’ve been getting ready for, and getting y’all ready for, for the last few months.

People continually email me and say that I have a great knack for dropping some really depressing stuff on people, and then turning it around and making it seem alright.  That I can temper the doom in some of the posts with an underlying seam of hope.  I’m not sure how to do that tonight.  Really.

When I look at Amie in the last few days, the disease is just so much more manifest in her face than it was, and has been.  It makes it far more real, far more intense, and that then makes me more anxious.  I’m really worried about her descending into a spiral of pain, and hope that when it comes, it comes quietly and with peace.

But, as with anything else that we do in life, we are not in control.  No matter how much we want to be, crave to be, or demand that we be…  we aren’t in control.  Life does not spiral out that way.

The only thing we can do is do our best with what we’ve got in this moment.  To look at what we’ve got in front of us, and do the best to make our spouses, our children, our peers, and our kids proud.  

It makes me think back to Monday, with the Martin Luther King Jr. holiday…  My absolute favorite moment on the DC trip is when we go to the Lincoln Memorial, at night, and gaze out, as Mr. Lincoln does, looking east over the reflecting pool.  


MLK gave his “I Have a Dream” speech from the landing beneath that majestic statue. 



Both men saw the reality that was in front of them, and made the absolute best out of the tools and situations that they had in front of them.  But hot damn it’s hard.  It’s so damned hard to do the good thing, the right thing in the face of that.

<Those of you with basic historical knowledge are going to point out that both of them were assassinated for their efforts.  
I am not comparing myself to them, but to their struggle to do right in the moment.>

So, with that historical reflection, I bid you adieu this night.

…and for those of you following the Oscars race:  Go see Whiplash.  Oh, my I loved that movie.  It’s not calm….but man does it resonate with me.