Friday, September 12, 2014

Two Years. Two Years, today.

Hey All,

I had grand delusions about writing an epic post for the two-year anniversary of our diagnosis.

Today is that anniversary, and honestly, we're both so tired that writing a ton seems like an epic task.

That day is, of course, etched into my mind in so many ways.  Here are a few from me:

  • I remember that I had forgotten that Shelley had even taken Amie to the pediatrician's appointment that day.  I was so wrapped up in the start of the school year at the newly named McBride Middle School, and wanted to get the year off on a great start, as my first moments in MS at South in 6th grade were so, so hard for me.  When Shelley called me, saying that she was on her way to Mott ER in Ann Arbor, it was a shock.  My world had not yet shifted.
  • While in the ER at Mott, I pre-ordered my iPhone 5.  I was very excited to upgrade.  I pre-ordered my new iPhone today.  Strange.
  • Amie was entranced with the examination light in the ER room.  It's a massive circular light that I associate with operating rooms, and allows the light to be focused and diffused, depending on the needs of the moment.
  • I remember an endless amount of ascending specialists visiting us, so completely kind and overwhelming.  They were curious, asked a 1000 questions, yet all the same ones.  I remember Shelley being a trooper answering the same ones over and over with precision, patience, and kindness.  We didn't sleep much.
  • Amie was not very old at the time (22 months), and didn't have many words.  But she was so patient with us, and a little scared about whatever was going on, as she knew that it wasn't really normal.  But she had us both, and ultimately that's all she needed.
  • Here's what Shelley and Amie looked like, being brave that day:


Two years later, taken earlier this afternoon by Shel, we are now here:


Amie is pale, thinner, with almost no hair.  Her appetite is shot to hell, she has very little energy some days.  Her blood is crap because of the chemo, she needs frequent transfusions, refuses to have her picture taken 99% of the time unless we flat out bribe her, and she is frequently unkind due to her exhaustion.

However.

She's consistently one of the most kind and thoughtful kids I've ever met.  She loves playing with her sister more than anything else in the world.  She giggles so freely and honestly, that it destroys you with joy.  She embraces every stinking moment of the day with her utmost.

Two days in, when we had our brain surgery, I wasn't sure how we could do it.

Two years in, I don't remember what it was like not to do it.

Two days in, we wondered if she was going to live through the night...and how we weren't sure what we were going to have left of our daughter when she woke up.

Two years later, we see what an amazing fighter she is, how strong we have both grown to be, and wonder constantly what the future will bring to us.

She's passionately alive.  She's wonderfully alive.  She's overwhelmingly alive.

For now, that's all we can ask for, and that's what we're going to celebrate.

Night all.