the data is grim...but...

I'm a sucky nut-sheller.  Apologies.  If it helps, I often wish I were one of the clever peopleThe clever people have the ability to wrap all their thoughts up in two or three paragraphs.  Sometimes even sentences.  Succinct while not losing the wit.  And never go back for a post posting edit.  Or two.  Or three.  Million.      

Yeah.  I'm not one a them.

I suppose I'll have the thicker book someday.  


But, really, it's hard to pare down 8 months worth of conversation.  Plus all the yesterdays  and tomorrows stirred up with it.  Can you believe it's been 8 months since our last neuro appointment?  That's twice as long as it should have been.  Things move at a snail's pace in Bean Town.  We've been waiting since September for Dr. Neuro to get credentialed. 

Dr. Neuro has always been Trevy smitten.  Especially with his eyes.  She loves his expressive eyes.  And has maintained intelligence lies in them.  Somehow I mostly found myself at the doubting end.  It's not that I doubted his intellect.  I never doubted that.  I'm not blind.  I could see it locked in there too.  Sometimes even sparkling to the surface.  When they weren't glazed over by seizures.  Until eventually one could almost be convinced his ability to learn new things was entirely snuffed out by the electrical storm in his head.  But then I think  maybe I didn't give him enough benefit of the Seizure Monster Whooping doubt.  I always gave the Seizure Monster more power than  maybe I should have.  God...sometimes I wish so hard that I could rewind time and do things differently.  I wish I wouldn't have believed the data.  And would have clung to Hope.  I would have demanded more therapy.  Forced his right brain to create new pathways earlier.  I have no idea if it would have worked.  Dr. Boston once grimly educated us that it would not.  That as long as there was broken brain in there it would always try to do the job.  And would never succeed.  But I wish I had tried.  I wish I had challenged that idea.  I wish I had found the balance between Reality...Acceptance...and Hope.  Instead of giving ear to the sisters.  Fear and Sadness.  I was raised to protect my heart.  Prepare for the worst.  So instead...I found myself relieved when therapies were canceled for this reason or that.  Then I didn't have to watch him struggle through clusters all the while believing in my core that it wasn't even really benefiting him anyway.  Especially when 90% of his day was swallowed by seizures. So why bother. 

I am haunted often by the thought...

How many times have I been Trevy's handicap?


But that's history now.  Water under the bridge.  Yesterday.

Today things are much different.  Would to God that I'll not limit his potential ever again.  Would to God I'll choose Hope. 

Today I don't have to wonder if he's able to learn new things.  Today we're witnessing the miracle of Trevy all the time.  Every step he takes that he shouldn't be able to.  A miracle.  Every word he says that he shouldn't be able to.  A miracle.  Every time he responds to my words.  Follows one... sometimes even two. ..step directions.  Miracle...miracle...miracle!  

For a good fifteen minutes our conversation swirled around all the miraculous happening in our house.  And ended with a sigh.  Our eyes sparkling with joy.  The kind of joy that flows from watching a child who shouldn't...do.  Against all odds.  It's a special kind of joy.  One that not everybody has to opportunity to feel.  But the moms and dads who follow Trevy's journey and have watched their babies DO when they SHOULDN'T.  No matter how small the accomplishment may seem from the outside.  The therapists who've worked with those children.  The doctors who've advocated for them.  And all the people who love these little miracles.  These people have felt this special kind of joy.  It's so tangible I swear it has a flavor.  And we basked in it for a few silent seconds.  Tasting it with our hearts.  Savoring it.

Sometimes I even let myself imagine he'll go to college... 

My mouth blurted.  Somehow making it through my protect your heart filter.     

She smiled.  But not with her eyes.  And slowly a heaviness began to creep in.  I could feel my face muscles involuntarily slackening back into their more natural place.  Heavy.  Sad.  Broken.  There is always joy.  And lately, even Peace mingled in.  How can you not have some semblance of joy when you live with a Trevy?  It's just most times burning quietly.  More smoldering than full on flame.  Deep down where things are felt only by me and no one else.  Because despite all the miraculous...there is a significant brokenness.   Trevy is a true paradox.  A tragic miracle.  He is beautiful.  And amazing.  And miraculous.   But he is not what I wished for when I sang to the whirling twirling little bean in my womb.  He is not what I dreamed about when I smiled at Jonathan and asked if we should try for number 3.  This is not the life I imagined.  For me.  For him.     

I know he's a miracle...

I breathed.  She nodded.  Barely.  Trevy sat silent in a chair.  Looking up only when he heard his name.  Or a word here and there that he might have recognized.  Or maybe just because he wanted to see our faces to find comfort.  He may have said two words during the whole of our visit.  I think Dr. Neuro was unconvinced at the generous vocabulary I gave him.  His iPad was perched precariously on his lap. Probably he was doing puzzles.  Daddy poised to catch it should he make a wrong move.

But I want more.

I continued with my next breath.  She assured me of course I did.  I'm his mom.  It's entirely natural.  Healthy.  And the conversation turned to heavier topics.  Our segue into shop talk.   

How's his development?

Well, Dr. Developmental Pedi says he's functioning between 20-22 months.  

And socially?  Does he engage his peers? 

No.  Although he does interact with his siblings and unknown adults sometimes.  

He has quite a limp now?  Do you feel like his mobility is deteriorating? 

Well, actually, yes.  But his school PT insists he's almost moving at age appropriate.  In fact, at our last IEP there was some discussion about not even giving him PT over the summer.

Hogwash...she said with her eyes before going on...   

He clearly needs a PT eval.  His limp is quite noticeable.  And see how he cannot balance on his right leg (she was prompting him to put on his shoes while standing)?  He cannot lift his left foot or even just balance on his right leg because he does not have the muscle tone.  He needs an eval.  

I agree.  I have just spent my energy advocating for the therapies I felt would most benefit his cognition.  I'd rather him talk than walk, I guess.     

How many seizures are you seeing now?

Depends on the week.  Sometimes multiple daily.  Sometimes a handful a week.  

Do they look like the clip you sent?

Sometimes.  We're seeing a variety of seizure types. 

And the meds he's on?

Trileptal...Dilantin...Topomax.  At doses strong enough to knock a horse on her arse. 

When did we last get his labs?

Um.  I couldn't remember and shrugged.  From there we made a plan to schedule a Dr. Ortho evaluation.  An overnight EEG.  Specialized MRI.  Draw labs.  Possibly adjust meds.  Email Dr. Rockstar to keep him in the loop and get his two Trevy cents. And then it was our turn to ask the questions.   

 I shared my ARX theory.  How it's all connected.  Rare genetic anomaly with links to brain malformations.  Which we thought was benign after Toby tested positive with the same mutation.  But that was before brain tissue was removed and studied.  Brain tissue that revealed a brain malformation.  In a child with a rare genetic anomaly linked to Infantile Spasms and brain malformations.  I don't hold a degree in logic.  Math was never my thing.  But even I can see the probability of that being coincidence is slim. 

She agreed with me whole heartily.  And, in fact, was intending to chat about Trevy with a doctor friend hailing from the Brain Malformation Clinic a street over.  Who knew such a beast existed?  I certainly did not. 

I asked her if she could try to hook us up with other families with similar profiles.  Seeing there's a brain malformation clinic and what not close by.  She promised to try.  But emphasized the likelihood of finding a case matching Trevor's is a long shot.  He's one of a kind.  Like many IS babies.  It's not that there aren't other kids out there with whom to compare notes.  It's that either the science wasn't or isn't there yet.  Hello?  CURE!?  Epilepsy Foundation!?  Every other organization allegedly contributing funding for R&D!?   Except you, Questcor.  Keep your filthy money away from my kid.  But to the rest of you. Hello?  Do you see us down here? 

I shared my ADHD suspicion.  She laughed and said, "of course!"  "The two go hand in hand".  We agreed that we were not in a place yet to introduce a medication.  But there are choices into the future.  Should we need them.  Absolutely.  We'll need them!   

And then we were out of questions.  But for one.  The one I always promise I'm never going to ask.  Yet never fail to slip in.  Jonathan and I have this thing we do.  We seek each others eyes out when we're looking for strength.  Or support.  Or whatever it be which we draw from each other.  Our friends tease us about it.  Our eye thing.  I cognitively thought "we're doing the eye thing".  And we were.  He is my rock.  I am his sappy heart.  We're a team.  Team Trevy.  Team Foltzie.  I sucked in a breath and went for it.

And long term prognosis?  

It was her turn to suck in air.  And I swear to God her shoulders drooped just a bit.  Ever so slightly.  But in that subliminal message my heart sank nine floors down.  Right out the spinning doors.  Backwards 3 years.  She has always been filled with hope and optimism when it comes to Trevy.  I'll never forget the first time we met.  3 years and nine floors down ago.  Trevy's seven month old mop of baby hair still goopy from the Infantile Spasms confirming EEG.  We were being whisked to a  room in the neurology clinic.  Infamous for it's lack of space.  Jonathan and I were doing the eye thing.  Trying desperately to hold it together.  But feeling submerged in fear.  Our heart lungs burning for lack of oxygen.  Fear is oppressive like that.  The neurologist leading us to our hole in the wall room bumped into her on our way.  Described in detail our situation.  I can still see her nodding.  She's a tiny thing.  But so confident.  Dripping confidence.  She looked at Trevy.  Raved about his intelligent eyes.  And cute-aliciousness.  He's always been adorable.  She was adamant that we move aggressively.  ACTH needed to be injected ASAP.  My mind's eye was replaying it over and over.  The way she turned to us and said, "And we'll hope for the best".  She doesn't hand out promises.  Because you can't do that to parents holding a child afflicted with a catastrophic disorder.  But she was filled with Hope for Trevor.  Every time she entered our ACTH initiation hospital room she would emphasize "Hope for the best".  For the next two years she would continue to push Hope on us.  When his BEAM Study was scary.  She preached Hope.  When he relapsed.  Hope...she said.  Hope.  HopeHope.  She's a fan of Hope.

So when she took a deep breath.  And her shoulders drooped ever so slightly.  I could feel my heart cracking just a little more.  I didn't realize I had any whole pieces left.   

The data is grim...

She never says that.  Never.  Until today.

The data is grim...

The data is grim...

The data is grim...

It's like the words were things and not just intangibles.  Hateful little demons creeping.  Racing.  They were swirling around me.  Around Jonathan.  Impeding our strength-gaze at each other.  Attacking the healed portions of our hearts.  Death to Hope!  They cried.  Permeating every crevice of the room.  Choking all the tasty special kinda joy right out.  Until our mouths felt bitter.  Our tongues thick.  And our gaze crumbled.  Because there was no strength to be drawn from each other in that moment.       

Dr. Neuro is not a dream crusher.  So she added...


And glanced meaningfully at Trevy.  Reminding us with her eyes that in his own way he is amazing.  Miraculous.  Looking so cute.  So smart.  With the iPad perched on his lap.  He flashed a crooked smile at the three of us.  Taking his time.  Making eye contact with each person.  She noted how good he is with electronics.  And encouraged us to pursue that with his ongoing education.  She even added that some very smart people never even go to college.  Her delayed take on my earlier unfiltered slip.  I shook my head at her sad attempt to be uplifting.  She's so sweet.  It was clear she was just trying to cheer me.  Cheer Jonathan.  Herself.  Trevy didn't need cheering.  He's so happy right now.  And that means something too.  That is a tasty kind of joy too.  

But in many ways, this appointment changed the scope of things.  The day "hope for the best" was layered underneath "the data is grim".  Instead of the other way around.  Like old times.  The way that used to annoy me because I've never been very good at Hope.  And yet now... 

The crazy thing is.  I'm filled with more Hope than ever for Trevy.  Something switched.  In my heart.  Subconsciously.  Because Lord knows I did not suddenly decide to be hopeful.  Drama prone fatalism doesn't die easily.  Something else is to blame for the Hope switch being flicked.  Maybe it's a Spiritual shift.  God gets blamed for all the crap in life.  Maybe He deserves some credit for unexplainable Hope?  Maybe Trevy is to blame.  Maybe his beautiful eyes have finally convinced me to stop handicapping him.  And to let him blossom into whoever he is Supposed to be?  That's the thought that wrapped my heart in warmth yesterday.  When his little hand grabbed mine during the worship portion of church.  I squeezed back in response.  No pudge anymore.  Bony.  A little boy's hand now.  Yet still so little in mine.  He sang at the top of his lungs.  A joyful noise.  In the tongue of angels.  Because it certainly wasn't English.  I'm sure it's part of the growing process.  Growing into his mommy.  The mommy he needs.  Which is hopefully also shaping the mommy the other two need.  The fear and sadness of yesterday fueled my passionate pursuit of his radical rescue measure.  A part of my heart will always be thankful for them.  But maybe we've finally gone as far as those two sisters could take us.  We don't need them anymore.   Let me clarify though.  The Hope I have been feeling lately isn't the "Trevy's going to be healed" kind.  No.  Science, research and my belief that God is not a genie in a bottle tell me that isn't likely.  It's more a Hope that everything is going to be okay.  Even though it isn't.  Hope that Trevy is becoming who he was Created to be.  And so am I.  Hope that this.  Catastrophic epilepsy.  Life plans crushed to smithereens.  Left hemispheres removed.  Brain malformations.  Genetic anomalies.  Beautiful eyes.  Heart shatterings.  Grim data to be digested.   Miracles waiting with Jesus.  Miracles blended with brokenness now. Little boys reaching little hands up.  Tucking in.  Safe.  Warm.  Happy.  Singing at the tops of little lungs.   


This...is no cosmic accident.   And maybe it's time to Hope...

    "There is a time for everything, and a season for every activity under heaven:  a time to be born and a time to die, a time to plant and a time to uproot, a time to kill and a time to heal, a time to tear down and a time to build, a time to weep and a time to laugh, a time to mourn and a time to dance,  a time to scatter stones and a time to gather them, a time to embrace and a time to refrain,  a time to search and a time to give up, a time to keep and a time to throw away, a time to tear and a time to mend, a time to be silent and a time to speak, a time to love and a time to hate, a time for war and a time for peace. What does the worker gain from his toil?  I have seen the burden God has laid on men.  He has made everything beautiful in its time. He has also set eternity in the hearts of men; yet they cannot fathom what God has done from beginning to end."

Ecclesiastes 3:1-11