Snowflakes.

I understand.  Seems like every time you turn around I'm complaining or upset or the ever-present and somewhat dramatic "grieving".  Okay, so fair warning, this is a dramatic, over-the-top, I have a knot in my stomach post.  Shall we?  

It seems Lucas is drifting farther (further?) away.  I can't figure out why.  The reasons I come up with stretch beyond my limits of thought at times.  Could it be this?  Could it be that?  Should I do this?  Should I do that? 

"He's in there somewhere; he's not lost" Chris reassures me. Is it the life-sucking autism that keeps pulling him away from us, taking his smiles and his rare but hilarious cackle, and tucking them in his tattered pockets and stealing them away for his own amusement?  I imagine that whatever it is - a gene microdeletion on chromosome 7, autism -  to be one of those black ghost-like things with no face.  Is that Death?  Is that the "face of Death" I'm thinking of?  I guess it is.  I wish I could imagine it differently but right now, I can't. It feels like Louie is growing; but smaller and smaller rather than taller and stronger.  A small, tiny boy.  I can barely see him, his stick legs and sweet upturned nose.  

I want him back.  Last night, Chris and I chose, printed, laminated, cut and Velcro'ed hundreds of PECS (Picture Exchange Communication System) and made a travel communication book. Choices of activities, toys, foods, a schedule.  A way for him to tell us what's inside.  A way to help him not slip completely into the abyss, the folds of that smokey black robe.  

Louie has used digital pictures in the past and it worked well. His teacher says he can recognize symbols now and we should be able to introduce PECS. Using PECS is easier because we can cut out the step of taking the digital picture and downloading them to the computer.  Some things are hard to photograph too.  PECS offers every situation, action, emotion and more all on one CD you stick in your computer and start printing.  

Maybe this all could be because I never see Louie anymore.  He's in school from 7:30 until 1:00, 5 days a week, naps when he gets home and then is up for 2 1/2 hours before he goes to bed for the night.  2 1/2 hours of which is spent doing the dinner, bath, bedtime thing.  And, furthermore, he cries pretty much the entire time. Especially if Ace says anything.  Anything. It's not enjoyable time.  

It could also be me watching the two of them parallel.  Side by side.  Brother to brother.  It's an awful comparison between a 13 month old and a 3 year old.  One typical.  One not.  A brother silently sinking away and a brother begging him to stay afloat.  

Ace has such a jolly spirit. His laugh is unlike any sound I've ever heard, a giggle coming from places like above the clouds or falling to earth on the hexagonal symmetry of a snowflake.  I love his two front teeth.  And his smooth baby belly.  And he is doing all of this incredible human development.  I can't get over it.  I know, I know, I talk about this all the time.  The awe in watching a genetically perfect being who is doing all of this feeling, seeing, pointing, this-is-a-crazy-crazy-I want-to-see-it-all-world thing!  Pregnancy, childbirth, all those "is this for real?" miracles I thankfully have experienced.

Ace doesn't give up and will do anything to get Louie to notice him.  Even if that means hair pulling or pushing Louie's walker.  He follows him everywhere.  Does everything he does.  Ace has a hero; a hero who gives him nothing and asks for nothing.  Not even a straight look in the eye.  Of course, as a mother, it hurts to see that.  We are thankful Ace can take the punches.  I think I need to take some lessons from a 13 month old.  

I have a feeling that Louie will always be Ace's hero.  Not for what Louie gave but for what Ace was able to receive.  That is my wish, my hope and prayer.  A prayer I lift high and throw from the rooftops and mountain peaks. A prayer bounded up tightly, safely, bouncing off canyon walls; sailing away on the soft sway of the sea just so it will come back around even more breath-taking, beyond what I could have even imagined to pray for.  And be answered.

So, here's what I'm grieving this time.  I'm grieving that I cannot look at Louie's baby pictures, especially the ones in the hospital, the one where I'm holding him for the first time in the NICU, proud and innocent.  Yes, that was still Louie.  But it wasn't Louie with WS or autism. The black robe guy is nowhere in those pictures.  That baby wasn't the Louie who would drown within himself.  

But it is the Louie that's about to be pulled out of a deep hole by his family.  We will take a rope, the strongest rope. We will train our muscles and our minds; increase our endurance.  We will all make him grasp on, and slowly, we know it will be slowly, he will emerge.  Right?  He will emerge?  

So, could it be that a snowflake is the perfect analogy for these brothers?  I just read that "the ice that forms snowflakes is a clear scattering of light that is illuminated by the crystal facets and hollows and imperfections which make snowflakes appear white in color.  There is a widely held belief that there are never two snowflakes exactly alike...In a more pragmatic sense, it's more likely that two snowflakes are virtually identical if their environments were similar enough, either because they grew very near one another, or simply by chance." - loosely quoted from Wikipedia.  I don't believe in chance.  I believe these two snowflakes, these two brothers will grow very near to one another and that the casting of their dark shadows will glisten with a halo of white.