Thursday, January 30, 2014


I saw a link on facebook about SocialBook.  It is a company that takes your facebook statuses, pictures, comments, etc and makes it into a book for you.  I had heard of it before and had wanted to do it for 2013, as this was a year I would like to have bound together forevermore.
I clicked the link and it made up a preview of what  the first bit of my book would look like.  The very first page showed my very first status message that I posted on January 1, 2013.
I read it and my heart dropped.
It is typed below word for word, capital letter for capital letter, punctuation exact.

"My 2013 New Year's goal???  Get my ENTIRE family to January 1, 2014 with as MANY good memories and laughs as possible and as FEW scars and tears and pain as possible.  For some families this may seem like a given, but for our family and so many others I know this is a monumental, sometimes heartbreakingly, insurmountable goal.  There are families hoping for hrs, minutes, days and weeks.  Love to all the fellow warrior families out there, you guys know who you are.  Peace and strength to all of us."

Wow.  The things I wish I had known that moment.  That very moment my heart was breaking for the families barely hanging on.  For the families saying goodbye.  For the families watching a year tick by without their babies.  I had no clue at that moment.  No idea what this status meant to us.  No idea what was to come.  No clue that 5 months later I would be kissing my baby's cold head before his coffin was closed for the final time.

We become so involved with the other families in the community.  We love them.  We cheer for them.  We are willing to fight for them.  We grieve with them.  Our heart breaks for them.  We know all along that it could have been us, but we also know it wasn't.  We blindly go forward. We think it will never be us.  We never expect to see the profile pictures changing to candles with OUR child's name on them.  Never.  Never.  Never.

That being said it crosses our mind.  It crosses our mind late at night as we hear the sat monitor beeping, deep in the belly of the hospital as we see the look on the doctors face, in the PICU in the middle of the night as more and more meds get brought in, when we hear "crappy lung sounds".  It flashes thru our minds.

Then we see their progress.  Their improvement.  We see the FIGHT in our HERO's eyes!  We see the shine, the glimmer in their eyes.  We see the smile that could melt every drop of ice in the world.  They are invincible!  They are hero's.  Flesh and blood, real life, no doubt about it HERO's!  and DAMNIT our HERO will never die.  It won't happen.

We tap down the fear, we tap down the pain, we tap down the terror.  But we can't get rid of it.  It sits there.

What was on my mind that day, on January 1, 2013 when I typed that status update on facebook?  I can't tell you for sure, but I can tell you it was pain, and fear, and pleading.  Oh the pleading!  Begging for it to NEVER be MY HERO!

Yet 5 months later it was MY HERO!  God how I miss him.  It was insurmountable.  We lost the battle and sadly so did many other families.
Fuck Mito.
2013 was a dark year for so many of us, the lights that went out that year have left a darkness on earth, a void.  The light that our HERO's shown around the world, is deeply deeply missed.

Tuesday, January 28, 2014

Running out of Options

Benjamin has been struggling.  A lot.  He is finally in a school environment where he is expected to behave appropriately and complete his work.  This has been a big struggle.  When you combine that with some other things going on with him, it's been volatile.

I am on a first name basis with the principal, as Benjamin has been struggling so much.  We have already had to have repeated IEP and team meetings and plans are constantly changing.
Everything came to a head yesterday.

Benjamin slapped a girl 3 times across the face.  The teacher tried to get benjamin out of the classroom and into a safe place.  Ben resisted and because verbally aggressive.  The vice principal came down to attempt to remove Ben from the classroom.  Ben again refused.  He put up hand on ben's arm and tried to lead him out.  Ben absolutely flipped out and tried to run away.  He got Ben down a side hallway that didn't have classrooms and at this point Ben was in full blown meltdown mode.  Ben kicked his shoes off, threw himself around on the cement floor, bouncing off the cement walls.  He was screaming, yelling, name calling, kicking, hitting, everything.  The principal was called as nothing was working to keep benjamin safe.  Benjamin saw an exit and took off running in socks thru the school hallways.  They split up chasing him.  He was finally located back in his classroom hiding at his desk.
This is not the 1st time that this has occurred.  It's getting worse and worse.

These are not the only behaviors that are occurring either.  He now refuses to do any writing.  All of his work is scribed for him by his para.  He hasn't picked up a pencil in weeks.  Writing has always been a struggle for him, but it's never been to this point.  The goal is to get all of his work switched over to the Ipad but this isn't something the school has ever had to deal with, so they aren't sure how to go about doing that with the full curriculum.  So currently Benjamin runs in circles yelling out answers while his para scribes it all for him.

He's no longer able to handle any rotations or transitions at school.  He is now pulled out of his classroom and he and his para do separate work in the IR room alone.  He can't handle indoor recess, assemblies, or any of those events either as he is no longer dealing with the smaller spaces and lots of people and noise.
He's not making it thru recess, or lunch, or music or pe.  He will require complete 1 on 1 support for those activities as well.

The weighted vest is no longer effective.  They have had him in a short sleeve compression top, but the OT feels he needs more.  They will be transitioning him to a long sleeve compression top and full length compression pants.  They are having to make changes on his sensory schedule and the sensory room to better meet his needs.

It is clear that Benjamin needs a safe space to go to.  He needs to also be trained to go there on his own as he can't handle any touch or redirection.  There is an office right across the hall from his classroom.  They are going to be creating a table and turning it into a tent with origami paper and other calming activities for him.  The goal is when he panics that he runs there instead of away.

He is also being given a fleece blanket at all times that he can keep wrapped around him while he is trying to sit.  His chair will again be changed over to a special trampoline type chair.  They are going to be trying out pineapple gum to see if the constant chewing may give him some sensory input that he so desperately needs.

There are a lot of concerns about the path we are going down with Benjamin, but at this point nobody is sure how to stop the ball from rolling.  Safety is currently a huge concern, for him and for the people around him.

His teacher is so frustrated and was darned near in tears talking about the classroom concerns.  The entire team said they have never experienced a child that can go from 0-70 in 3 seconds with no warning and no idea what even caused it.  He has ZERO currency, as in nothing motivates him, and nothing punishes him.

He doesn't communicate.  It's all about what he wants and that is the only thing he will speak of.  He doesn't understand.  He feels no shame, he has no regrets, he doesn't care what others see or think.  He is verbally abusive and has become very physically abusive at school.  He is destructive.  He puts himself in harms way.  His obsessions and anxieties are running rampant.

The team hasn't given up but we are definitely running out of options.  We are flying down a slippery slope at 90 miles an hr and nobody knows how to turn it around or put the brakes on it.
Currently Benjamin is on at home suspension and the goal is to have him resume school tomorrow.  The accommodation list on his IEP has grown to 23 pages long, and they are hoping to get a large bit of the new changes in place before his return tomorrow.

I'm exhausted.  I'm at the end of my rope.  The school is too.

Currently he is curled up in a ball on his chair, in a meltdown because he has 7 math problems to do.  The options for me are limited.  I pick up the pencil and scribe for him, or the work doesn't get done.

I wish I could reach thru all of this and get to the inner benjamin, but I can't.  The autism, and OCD, and anxiety, and sensory issues have become all consuming, they have taken over and we can't seem to figure out how to reach thru to Ben.  My heart breaks watching him struggle, and I don't know how to help him.

Wednesday, January 22, 2014

Breathing for Two

37 wks and 4 days was how long I was pregnant with my beautiful tiny man.  I breathed for him for 37 wks and 4 days.  He was safe, protected, held close.  I held him as my own, only mine, for 263 days.

My baby was by my side and in my arms for only 177 weeks 6 days.  I tried to breathe for him.  I tried to give him the fullest life he could possibly have.  We made everything bigger and better, we celebrated more, we snapped more pictures, we made every moment as huge as we could.  We provided the medical support to keep him breathing.  I literally lived for him, thru him.  I was him.  I spent 1, 245 days keeping my baby alive.  That seems so short when you break it down into days.

Here I sit, with empty arms for 38 wks, 3 days; the longest 270 days of my life.  My hands are idle.  My mind has so much information that isn't needed.  My senses remember.  Muscle memory is there.  Sometimes I hear feeding pumps beeping, and HR monitors ticking, and O2 machines swooshing; where there is none.  I find an old syringe laying around and next thing I know I have pulled the plunger back to just the perfect med dose of 3.3mls.  I can picture the squeezing rhythm I was taught on the ambu bag.  I see the dial on the stove and remember the dial on the O2 tank.  I think often of his doctors and nurses and how much I miss their voices, their laughs, the clicking of those dang cowboy boots as he walked the halls of the hospital.  I hear the sounds of the bed rails of the hospital bed, squeaking loudly no matter how quiet we tried to be.  I see the sign when I look at a kids book before the word.

I'm no longer breathing for me baby, some days I feel like I'm barely breathing at all.  Then I found read something.  Something that touched the very depths of my soul.

"Then I know with every breath you take You'll be taking one for me"
WOW.  Like WOW.  I'm always one to have words, but this is something felt deep inside of me, that words can't touch.
I'm breathing for my baby.

I knew something had to happen.  So here I am.  I've put in 35 miles this month.  I hit my longest run/walk ever at 10 miles in one workout.  Today I broke my fastest mile by 1m5s.
What is this all for?  I'm breathing for Eli, I'm running for Eli, I'm doing this for Eli.

My beautiful boys coffin was lowered into the ground on May 4, 2013.
I will be running my first 1/2 marathon on May 4, 2014.
I'm doing this.  We are doing this.  I'm breathing for Eli, although most days I think Eli is breathing for me.

After my big run the other day, one of my best friends said something that was heartbreaking and beautiful and amazing to me.
"May the pounding of your feet crush the broken pieces into something new"

Again WOW.  Speechless.

Lastly this week I saw a pin on pinterest.  "The cure for pain is in the pain."  WOW again!  Don't know how many times I can say WOW.

This all leaves me knowing I'm doing the right thing.
I'm breathing for my baby.
I'm crushing the broken pieces into something new.
I'm journeying thru the pain, not ignoring it.

Does this make it easier?  No.  Does it fix it?  No.  Do I still hurt more than words could ever describe? yes.

Foot to pavement.  Over and over and over.  The wind pounding on me at points.  The cold.  The heat. The rain.  The snow.  My lungs burning.  My muscles tired and sore.  My mind screaming stop.
My heart and soul screaming GO GO GO!!!
Running blocks the pain, running brings on the pain.

In closing..
"I keep so much pain inside myself.  I grasp my anger and loneliness and hold it in my chest.  It has changed me into something I never meant to be.  It has transformed me into a person I do not recognize; But I don't know how to let it go."

I will find my way.  My baby's wings will carry me thru when my feet can no longer move.

Always and Forever Tiny Man!