Chapter Two, Markers

Chapter Two

The room is dark. We are alone for the first time all day. He's been napping off and on.
He says groggily from the depths of the blankets, "Mom, my feet feel funny."
"Are they asleep?"
"No, they are like the rest of me."
"Half asleep?"
"No. Half awake."
--Sam and me, March 31, 2012 7:31pm


Saturday March 31st, 2012 was our first whole day in the hospital.

I posted this photo and caption on Facebook:

This kid is seriously amazing. I could not feel more blessed to be his mother than I do today. I HATE what we're doing, I HATE what he's going through, but I could not love, cherish, or admire him more.

Chapter One, The beginning

February 23, 2012 8:31pm (Facebook post)

"I can see things in my imagination. Want to watch me?"
"Sure Sam."
"Ok, watch."
*sits totally still for about 10 seconds, staring into space*
"Did you see me imagining, Mom?"


Chapter one

March 30, 2014

Two years ago today my only child, Sam, was diagnosed with a brain tumor. He’d been having issues with his vision, headaches, unexplained vomiting… he was clearly ill and getting worse. We had gone to see Dr. Debbie, Sam’s pediatrician, on a Wednesday and she had ordered an MRI. Early Friday morning, before showers or breakfast, we went to my hospital (where I work as a nurse), so that he could be sedated to have his images taken. A couple of my coworkers had agreed to do his imaging and manage his sedation. This was a big favor to ask, especially of the anesthesiologist, as we didn’t routinely take pediatric cases at the time… but I wanted people I knew and trusted taking care of my boy.

Prologue

I wrote this on March 29, 2012.

I had no idea how incredible (in great and terrible ways) the journey we were beginning would be....


Alrighty then. People have been bugging me to start a blog (or something) about all of the stuff my kid says. I didn't plan on starting it today. Honestly, I didn't plan on starting it at all. Posting funny kid stuff on Facebook has been plenty to keep up with for me, but circumstances are changing and I decided that stay focused and slightly less than crazy, I needed to write something.

So here I am writing about my child, myself, and our life together. His name is Sam. He's four years old. Or, as he says it, "Half way between four and five". I am a single mom, nearly forty, and a nurse. He's always been precocious. No rocket scientist at two years old or Mozart or anything, but certainly precocious. He's a funny, sweet, overwhelmingly energetic information sponge. He REMEMBERS things. It kinda creeps me out sometimes. He NOTICES things. Details, connections, nuances of meaning, and the emotions of others.

He started getting sick about 2 months ago. Cold symptoms. Headache. Vomiting. All intermittent. We went to see the wonderful nurse practitioner at Sam's pediatrician's office. She and I together decided it was a virus with headaches made worse by his (possibly) crappy vision. So, I put an eye exam on the "let's make it happen soon" list. In retrospect, I should have put it on the "let's make it happen now" list. There's a pun on hindsight being 20/20 and eye exams waiting to be made here, but I don't have the wherewithal to make it happen.

The last week has been really hard. The illness, whatever it is, has been visiting daily. Without the cold symptoms this time. Headaches and vomiting. I cannot tell you how hard it is to watch my little guy get all squinty with pain, lie his head down, and say, "I just want to go to bed, Mommy." A four year old who WANTS to go to bed??? Back to the doctor we went. We're scheduled for an MRI of his brain tomorrow morning.