July 02, 2016


Sometimes, there is a lag between blog posts because I am consumed.

Some may see me consumed by the obvious physical needs of Bridger - all of the visible needs.

But most of the time, I am consumed by the invisible.

Bridger has his obvious disabilities -   They are the obvious ones you can see by the sight of his wheelchair, by his spindly legs or stout curving spine.  The ones you see by looking at his eyes, or at his g-tube on his stomach or by the extra puff in his pants from an oversized diaper.  They are the ones you hear when he tries to speak or answer a question you ask.  

Bridger has his invisible disabilities, the ones that involve behavior and sensory integration.

And right now, the invisible is swallowing me whole.

It is swallowing our entire family whole. 

I am spending more hours at more doctor appointments and adjusting/changing meds - which only complicates the behavioral battle.

If you look at Lance's arms today, you will see deep scratches down both of his arms caused by Bridger, that yesterday had oozed blood when Lance was trying to get Bridger to move towards his room from the tv. 

If you look at Alan's ear today you will see fresh scabs by the gouges that Bridger took out of Alan's ear today when he tried to get Bridger dressed.

If you look at me walking you will see me hunched over and if I turn to the left without premeditated thought you will hear me gasp and drop several inches towards the ground in pain from throwing out my back so many times the past couple months trying to move Bridger's 85 pound thrashing body to a safe place for him to continue his full body tantrum/meltdown.

If you look at Eva's arm today you will see similar scratches to Lance's when she tried to coerce him to come to the kitchen for dinner.

If you ask Eliza about her head today you will hear her explain how Bridger unexpectedly chucked something at her in anger when she was just trying to play the ipad with him.

If you ask any of us today, we will tell you that we are tired.  We are so very tired of the invisible things.  Not that we want them to be seen - but we feel we need to wear a sign requesting a pass or a pardon from keeping up with the ordinary.  After experiencing the constancy of the challenge of the invisible, it is difficult to keep our social smiles on, to get our other children to their various commitments on time with their can good donations and other assignments.  It is difficult to always answer emails or even care about the trivial details of happenings or even carry on a conversation some times.  It is difficult to answer "fine" to the wasted question of "how are you?" when no one really is ready for their ears to hear the real answer.

The invisible in Life with a Side of Special also becomes the secretive.  Special families hesitate to share all that is awful about behavioral disabilities because they don't want to paint an ugly picture of their beautiful child.  It is hard enough to get people to engage with and desire to approach our child, that I find myself only sharing what is charming and lovely about him to keep what limited positive perception there is about him at the front of what people see.  I have already pushed his wheelchair through a gaggle of children yelling, "ahhh, MONSTER!" as they run away.  I don't want to share with anyone that he actually acts like it sometimes too.

Life with a Side of Special can be sweet, grueling, blessed, impossible, refining, exhausting, elevating. . . 

. . .and it can be, torturous.  

Invisibly torturous.

Not to worry, as soon as he is done attempting to kick out the car window here as we are going to the grocery store, he will be simply darling by the time we walk in.  But just to be safe, I am turning around to drive back home and order pizza for dinner.