Another Thing for the Pile

Tiny was diagnosed two years ago, almost to the day, with this rare genetic disorder called TSC.  We found out after what now seems like two blissful years that he has brain tumors.  And seizures.  And delays associated with those.  And for the following year, I was in hell.  I had to medicate myself, see a psychiatrist.  I had no escape from the hole that biology dug for me until he was entered into the developmental preschool, and only then did things start getting better.

With surgery on the horizon, we are currently undergoing a ton of pre-ops, one of which was with a psychologist...  whom I asked to evaluate him for both ADHD and ASD.  It was a can of worms that I felt needed to be opened in order to help him.  But at the same time, adding another diagnosis is something like how an unexpected punch to the gut feels.  It knocks the air out of you, tears spring to your eyes, you can't find your voice, and pain sings through you from the tips of your extremities and pools in your stomach, roiling around until you feel the need to throw up everything from the last 24 hours.

He's autistic now, too.  I have to remind myself that he always was.  It was there before the label was placed.  Before the chart was signed and the questions answered.  I suspected it.  I knew.  And still, the grief of understanding what this means for him in the future keeps sneaking up on me, catching me when I'm still and things are quiet for a moment.  The tears run down my face.  I'm not sad, not really.  I'm not angry.  I'm in limbo.  Mommy limbo.

I want to do what I can to help my child, but I feel so buried under ...everything.  I can't be the first person to have to dig out from under this.  I won't be the last.  I want to say I'm stronger and braver than this, but it's just a front.  I do what I do because I have to.  For him, for me.  For my family. 

I just hope I'm doing the right things in the right order to make it better for us all.

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.