August 3

Back in April, we took Sam to see a new pediatric neurologist who specializes in movement disorders who had recently joined the faculty at our Children's Hospital.  We'd seen him in a documentary (about one of Sammie B's buds) and there was something he said about how complex eye movements and vision are in kids with movement disorders that just made sense.  That described Sam's eye movements and visual tracking in a way that no other doctor had ever seemed to understand.

We knew we had to take Sam to see him.  Short story is did think it is important for us to do some more testing, though he's conservative in what he wants to do, and like us, doesn't want to test just for testing's sake . . . but only to run tests that if they showed any "answers", could tell us something that could HELP Sam.  So, we scheduled the first ordered test - a repeat MRI (her one and only MRI was at 16 months and was normal) for May 29, and I dreaded it.  I literally lost my appetite thinking about it, and in the days leading up to it, I lost over 6 pounds.  

Then, the date came, my mom came into town for moral support, we had our support system in place, and then Sam got a fever, and we had to cancel and reschedule the MRI altogether.  August 3 was the next available date.  All summer "August 3" has rang in my head as a day I was dreading.   Dreading.  Because I hate that my girl has to go through this, be poked, prodded, put under anesthesia, etc. so that doctors can look at her brain.  Because I'm afraid of the results.  Because while everyone assumes we want an "answer," the truth is, sometimes people get answers they don't want, and well, that's more terrifying than not having an answer.

And now, here we are.  The eve of August 3.  The day I've dreaded for months, and I'll take my sweet, magical Sammie B for an MRI while my mother is across the country burying her little sister.  Because this week, my Aunt Sandy died at the age of 59.  While my girl undergoes a test to see if her brain is "typically" developing, my mom will be at the funeral of her second younger sibling to die too soon.  I can't really even wrap my head around the fact that of my mom's family of five kids, there are only three left.  I've cried all week, debated about trying to reschedule the MRI so I could go to Alabama for the funeral (but the next appointment would again be months away), knew that I just couldn't, knew that my aunt would understand, knew that she'd want me to be RIGHT here, right with Sammie B, called my cousins sobbing to apologize, hoping they'd understand too . . . hoping they'd tell me that they know she'd understand (and they did) . . . so I won't be there, I'll be here.  With my girl, but part of my heart will be in Alabama.   

Who knew that this dreaded date would be so, well, sad?!  So, tonight, I'm filled with a whole lot of "it's not fairs!"   But, I'm going to push them aside, crawl into bed with my Sammie B (who gets to sleep with us tonight as a special treat) and we'll get this thing behind us.  And, I'll do my best to not worry about the results of this test.  

I'll do my best to just focus on her.  What she's doing.  She's here.  She's amazing.  She's doing and saying new and amazing things every single day, and no test, no "answer," can take that from us. 

Because no test can tell us what this child can or can't do, will or won't do, or who she will become. Because there's no test in this world that could tell us that this girl is anything other than pure magic.