along the way

If it's possible to have conversations made up of single (approximated) words and long processing pauses...

Then I'm thinking we're getting mighty close!

Trevor will spend a solid 10 minutes pointing to various random objects and either approximate without prompting what he thinks they are.  Or approximate me when I tell him what he's pointing at.

And he knows what he's trying to communicate.  If I guess right...he celebrates with this bizarre but deliciously hysterical cackle laugh.  If I guess wrong...he complains.  Loudly.  And when all else fails he grabs my hand to hand-over-hand me!  

He's getting more and more opinionated by the day! 

Not that I've ever been one to enjoy a temper tantrum really.  But my heart does soar when he gets SO mad each time he doesn't get his way.  And he's just started doing this hilarious thing where he fake sobs and puts his hand over his mouth.  I am SO going to try and catch that on film!  It's adorable and hilarious!  And even more exciting...it's a turn of a developmental page!  And forward developmental movement is SO good for the heart!  The mommy heart.  


It's hard to stay positive when we hit those plateaus Dr. Rockstar and team warned us about.  When the climbing upward stops for awhile it leaves time.  To catch our breath.  Think about the past.  Think about the future.  And wonder what the future holds.  If the plateau lingers too long we start to wonder if this is the last stop on the developmental track.  Wonder if Trevor's cognitive progress will stop at 3.  At 10.  At 20.  Or here...somewhere between 18 and 24 months.

We have been on a plateau for a while.  

It's never really obvious when movement starts happening again.  The movement itself is slow.  Like watching the grass grow.  The paint dry.  But suddenly Trevy is standing at our knee and he's not just pointing at random objects and approximating.  

Rather...he's linking single words that form complete thoughts together...

PopPop - his universal term for either of my parents

::long pause::

Caaaaa - his approximation for car 

::long pause::

Pooooo - his approximation for pool

A sentence minus the filler.  A complete non random very specific thought!  Pieced together with single words and pauses.

A miracle!  

I'm not even sure how to fully articulate the emotions that swish inside.  Likely it's impossible.  Because they are the stuff my life is made of.  Sharing one's own personal journey is always difficult to fully be felt on the other side.  

A year ago...my son was a beautiful seizure saturated soul.  His understanding of the world and his role in it was limited to only what he could see.  He was for all intents and purposes - deaf and mute.  A walking infant.  His enjoyment of his world was limited to those handful of moments throughout his day in which his body was not being ravaged by seizures.  We watched as those moments shrank until they were almost non-existent.  Until his little brain was firing more times than there are seconds in day.  

A year ago...I could not have imagined the Trevy I have today.  

The Trevy who is on the cusp of linking complete thoughts together.

The Trevy who clearly communicates his preference for chocolate milk over juice.  

The Trevy whose eyes sparkle while shouting "zoooo" when overhearing his parents tossing around the idea of going today.  

The Trevy who cackle laughs when he hears mommy understanding what he's trying to say.  

The Trevy who fake sobs with his hand over his mouth when he doesn't get his way.

The Trevy who loves to roar like a like.  Like a little boy.  A typical little boy. 

The Trevy who spots the alligator at the zoo...and without prompting makes a cognitive association which ends with a "rooooooar"!  Like a little boy should!  




Sometimes I hesitate to share how Trevy is going.  For fear of miscommunicating.  In either direction.  

I shared with a friend recently that...

Not every day is miraculous. 

Not every miracle is obvious.   

But there are certainly miracles along the way...  


Anonymous said...

Loving the progress, can't wait till H does similar.

And agree, plateaux (sp?) are not so good for the soul!

kt x

Lisa said...

Love this post.

I'd also like to hear more about the plateaus that Dr. R and team told you about...it makes sense that they would happen (and makes me feel better about J too).

Anonymous said...


Happy here as Happy's Mommy!


Colby said...


I love this post....I can just FEEL your emotions....

Trevy has such opportunity in front of him now that his brain is so clear....And he has so much time ahead...I know it just won't come fast enough for you!!!!


blogzilly said...

It's all about the journey isn't it? It's only taken me a year to realize it. :P

JSmith5780 said...

His progress is amazing. I am so proud of him (and you and J) for getting here!

The plateaus stink, we still deal with them, and even the occasional back slide. Im sorry but those moments of fear and panic never rally dissapate (see my post today).

PLEASE get a video of his fake sobbing. I want to see :)

MJStump said...

Those plateaus are not so fun...that is the time when all those crazy thoughts, and worry filled moments creep in and before you know it you are looking back in time and forgetting to see all the wonderful things that lie ahead.

Love the cackle that Trevy does when you get what he is trying to communicate to you. Kylie does the same thing...it is hilarious! She will even quiz us with signs or words, and then get all excited when we get it right.

Love these moments!

Adesta said...

Woohoo!! Go Trevy!!! He has come so far in such a short time!! I love watching kids begin to put whole thoughts together. The joy on their faces when they realize that they are being understood is priceless.