After the Conference

Rare Disorders be damned...

"So all of the neurologists agree..."

I know.  I know.  Don't say it.  You don't need to put it into the air.

"He'll be under for about four hours."

And need a special machine.

"...24-hr ICU stay..." 

Right.  Okay.

"...won't even discuss discharge until day 3."

My perfect, active, happy little boy won't have the stamina to do more than eat, sleep, and snuggle.  He's only four.  He should be worried about how Legos stack, not watching Momma cry over brain surgery.

"We want to be aggressive and remove this one too..."

Will it even make a difference with how many tumors he has?  Will the seizures stop?

"And maybe this one.  The question is whether he'll need one or two procedures."

Just do it.  Just get it over with.  I can't wake up in my preschooler's bed to seizures every morning anymore.  It breaks my heart... every morning... at 6:30am...

"Because this is a rare condition..."

God, I hate when they start like that.

"...we're hoping..."

YOU are hoping?  I'm hoping.  My husband is hoping.  My family is hoping.

"The success rate is about 50%."  

Great.  Should we flip the coin before or after you remove part of his skull?

"We need your permission to..."

Do anything. Because I love that kid more than you ever will.  Give us hope.  Do something that will allow him to grow cognitively.  Fix his brain.  Please, please, fix his broken brain.