And the hits keep coming...

Before the age of 18 The Oldest learned a lot of words that the average teenager doesn’t learn: Nevus, melanoma, bed rest, skin grafts, staples, stitches, donor site, graft rejection, mepilex, compression garment, Shriner’s, anesthesia, Bacitracin…..

That was more than enough.  Those days leading to the malignant/benign verdict were long.  So long that seconds were weeks. 

And here we are again. Feeling every second hand on every clock , in every country, in every state, in every home on Earth.

Every call makes me flinch.

There’s anxiety in my chest and I don’t really know what to do besides stand here.  I feel like I have to do something.

Research makes me crazy.  Looking at him makes me crazy.  Not because he’s doing anything wrong but because there is this beautiful person, this incredible young man and something is under the surface of his skin and I don’t know what it is but it’s bad.  Not “cancer” bad but “potentially debilitating” bad.  And I feel like we used up our dodged bullet pass.  Do we get more than one in a lifetime? 

The blind spot appeared a few months ago in his left eye.  Blood work was all negative.  We thought the MRI was clean.  Turns out, we just have a stupid doctor.  Optic neuritis is kind of a big deal.  “A little inflammation” is kind of a big deal.  It’s an indication of Clinically Isolated Syndrome, Neuromyelitis Optica, or Multiple Sclerosis. 

Those words take my breath away. 

Shock tinnitus set in.  The doctor noticed The Oldest’s feet start to shake and my face paling.  He smiled a lot.  He’s a kindly, older gentleman.  He’s probably someone’s grandfather.  He tried to be comforting, reassuring, and soft.  It was like giving us a sweet little teddy bear that was filled with brimstone. 

Now we get to learn a lot of words that near 20 year olds shouldn’t have to learn: Spinal Tap, medication regimen, relapses, flare ups...

He should be learning about college parties, poor life choices excused by immaturity, the usual rites of passage that “normal” twenty somethings get to experience. 

And he just keeps going.  He puts the one foot in front of the other with a brave face and it makes me so fucking mad that I could scream. 

I want to take beautiful things and smash them to pieces.  I want to feel something shatter and split apart that isn’t inside of him or inside of me.  I want something to pay.  I want this stolen time to be replaced.  I want him to have a different, long, pain free, wheel chair free life. 

I’m so angry that I can’t even cry.  The back of my throat hurts and my eyes water and the tips of my fingers ache.  But the tears won't budge.  Because the dam will break and I will drown.

I want to grimace when someone else tells me their story.  I don’t want to empathize.  I want to comfort, not connect. 

I want this to be some terrible mistake. 

I want this to be a nightmare that we will wake up from. 

I want this to be just a warning shot, a brush, a miss, deflected….

But all the want in the world will not make it so.

Today, we have some lab work to complete and a spinal tap to schedule. 

Today, we go through the regular motions of life and try to ignore the monster living inside of him who’s name we don’t know.