because I need to remember - Part I

Hi Nurse Detroit...

my email began...

Hope all is well and you're not stuck in the snow like we are here in RI!  Brrrrrrrrrrrr...

So at the risk of you thinking I'm a total loony toon...

When Trevor had his Hemi (October 9th 2009) I asked Dr. Rockstar if I could see the tissue they removed.  After he stopped laughing (he said it was a first) he told me no but I could have a picture.  I never got that picture.  And I know it's late in the game...and may not be possible.  But I would really like to have that picture. 

Let me know...and thanks.  You know...for not thinking I'm crazy. :) 



A handful of minutes later I got her response.  I can't help wishing I could've seen her physical reaction as she read my request.  Some year and a half later.  I wonder if she spewed a sip of coffee.  Staining her fave scrubs.  Or choked on a bit of lunch.  Or rolled her eyes at yet another whacky parent's demand.

I will see if there is anything on file from Trevor's surgery...

Was her reply.


Followed a couple hours later by this... 

I do have a picture...but it is pretty gruesome.  Are you sure you want to see it?


No surprise to those who know me best.  I responded...

I know this is going to sound nuts.  But yes. 


I may actually make copies to distribute every time someone treats us like he had tubes put in his ears. :) 


This was shortly followed by a sequel email containing the pictures as attachments...

His name is not on it because he was part of the study...you cannot have identifiers with this sort of thing.

But, it IS Trevor's tissue....

Hope this is ok with you.  


 Before I even peeked I responded to her.  I felt obligated to assure her. 

Before I even look...I am PROMISING you this is okay.  I just got off the phone with my husband...he agrees.  We KNOW what happened to our son.  We touch his scar.  And it's okay.  Promise.  


And then I opened them.   There are two. 

I stared for what felt like an eternity at the gory mass of him.  Gruesome was a good choice of adjective.  An entanglement of  tissue that was once inside my son's head.  Infested with seizures.  Removed.  And posed for a photograph.

Did he look different once it was out?  

I wonder when they were taken.  Those pictures.  Was he still sleeping on the table.  Looking so fragile.  Pale.  So very small.  Too small for this

 Were Dr. Neuro Surgeon's hands deftly sowing up the line.  Sealing the jagged opening running the length of his head.  Leaving a scar which is now effectively covered by curls.  Almost undetectable.   Unless a breeze parts the strands just so. 

 Were we kissing him for the first time.  Trembling all the way to our lips.  With fear.  Angst.  Relief.  Hope.  While several floors below a nurse removed her gloves to have a more sure grasp.  So as not to ruin the Kodak moment.  

Or maybe we were pacing like caged animals in front of the elevators.  Because they'd taken him up to PICU already.  They weren't supposed to.  We were supposed to see him first.  To breath again.  As if 10 hours of not breathing wasn't crushing enough.  It wasn't fair!  But they didn't wait for us.  Another promise shattered.  On the floor with the million others of our Life that turned out much differently than we'd dreamed.  We were supposed to be in Africa.  With three whole children.  Three healthy children.  Three little brains all intact.  Not a seizure in sight.  Yet there we were.  Bright lights.  Sterile walls.  Pacing.  Frantically waiting for the elevator doors to creak open.   So we could see our half brained son.  And breath again. Was it during that gap of broken promise and reuniting that the flash of a camera popped for a second.  Twice. 

Not that it matters.  I just wondered.  Another question that will likely never have an answer in this life.  And yet I ask anyway.    

And you may be surprised but I was not grossed out at all.  My stomach did not heave.  Lunch stayed put.  My eyes watered a bit.  There is a certain beauty in it.  A mystery.  A miracle.  I certainly felt in awe.  Absolute awe.  It is more miraculous and bizarre than words can ever attempt to describe.  To know that my child.  Not your child.  Or another child.   Or that kid on Mystery Diagnosis. But my child.  Had half his brain removed.  Half his brain.  It's not worth mentioning that they left his motor strip untouched.  I know because I was glued to those pictures for a long time.  And I assure you.  They look like pictures of half a brain.  Pictures that were taken because he was enrolled in a study.  Of the brain.  Open only to those children who have qualified for a Nightmare Miracle.  And he is more than just one of those children.  He is mine.       

So I sat there staring.  






More convinced than ever that he is a miracle.  

A sheer miracle.  

And I want need these pictures to remind myself.  To keep it real.  Because the curls cover the scar so well.  And his beauty covers all the rest.  And it's easy sometimes to forget.  To get so caught up in the miraculous now that the nightmare of yesterday is hazy.  Almost like I dreamed the pacing by the elevator doors.  Like it never happened.  And I'll wake up under a mosquito net sweating from more than just the smothering heat. 

But it did happen.    

This is not a dream.  Even if threads or nightmare have been woven in. 

This child.  My child has walked to the brink of death and back.  

And I need to remember.  To fully appreciate him.  All the colors of him.  A more brilliant rainbow than a heart can fathom.   

And he is a miracle.  

Of course I'll be posting the pictures.  Because, like I told Jonathan last night, I feel an intense need to bring those willing as close to what we have and are living as my ability allows.   

But for today...go ahead.  Finish whatever it is you're munching.  I'm saving the gruesome for another day. 


Anonymous said...

Dr. Rockstar LIED to you! I asked to see Ryan's brain before you asked to see Trevy's;-) But he never offered me pictures. He just said, "you don't want to see it." Of course, my husband was shocked at my request and shut me down pretty quickly. LOL. How nice to have a momento:-D


Anonymous said...

I remember. Bibi

happy's mommy said...

Erin...I forgot you'd asked first! I remember having this conversation before. Actually...if Ryan was in the study too...there may be pictures on file? Of course, you can always use Trevy's...;)


Anonymous said...

I sometimes feel the need to look back at photos of our time in hospital, it is so easy somehow for our brains to blur it out and make it dream-like.
Did it really happen, did we really go through that, etc.

Amazing stuff.

And I, for one, can't wait to see. Wish we'd asked, though my husband would definitely NOT want to see!!

kt :)

(oh & PS if you didn't see on FB, Henry's EEG was....normal! :) )

happy's mommy said...

Oh kt...I'm SOOOO happy to hear that!


Sophie's Story by Elaine said...

Like I said before...I am SOOO jealous that Karen has a picture. And now you. Guess I'll be e-mailing Ruth :)