Life with Autism

  • I am..... - I am… I am the little engine that did. When on my journey in life, my tracks led me to a mountain - a diagnosis of (child’s disability) - I looked at it...

Friday, June 24, 2016

Whose truth?


I started off this morning dreading an MRI on my back.  A few years ago in a period of excruciating pain I finally went to the back doctor to see what in the world was going on.  The x-rays showed a possible stress fracture among other issues with a disc.  He sent me to have an MRI to confirm.  It was indeed he felt, a stress fracture.  In our "Life with Autism & Seizures" I can't imagine how I would have a stress fracture!

(insert snarky laugh)

I mean, all I seem to do is find myself having to lift Brandon from awkward places after a seizure. The tub, my flower bed, under a table, on the dog kennel, on the trampoline, and under his bed.  I'm sure I've left out half a dozen or so places...  Then there's the trying to maneuver a 145 pound brick of jello in trying to change him, sheets, etc for the time he's out cold from the seizures.

I recently found myself needing major knee surgery after an obstacle landing gone wrong during Warrior Dash....  So with this knee rehabilitation, the weeks of not being able to walk right have made my back feel wonky again.  And by wonky I mean that excruciating pain at times.  I went back to the doctor and he again wanted another MRI to confirm the worsening of that disc on the x-ray.  Today was that day.  But then Brandon had a seizure in the morning and I jokingly posted that while seizures do in fact, suck, they suck a tiny micro-fraction less when they occur on a day you had an appointment you didn't want to go to...

Our Neurologist had said that since Brandon is prone to cluster seizures, that if he has one Grand Mal we could choose to give him a shot of seizure medicine in hopes of thwarting any further seizures, at least for the day.

So I did that.

I gave him the shot and he was sleeping peacefully.

At least now he won't have another seizure - today.

Or so I thought.

As I do, I shut his door if I am going downstairs for any reason.  I don't want the dogs going in his room or him waking up and going out.  We are super paranoid of him going down the stairs in that state, so I want to hear the door open so I can go up there.

Well, I guess he got up and went to go out of his room.

All I heard was that heart-stopping banging of the seizure he wasn't supposed to be having again today, and ran to his room.

But I couldn't get in.  He had fallen against the door and was having a seizure.

(thanks universe, for the insult to injury)

Imagine the feeling of hearing what's going on and not being able to get through the door.

Wondering if it will be blood or broken bone.

I suppose that if there is one thing to be thankful for, it is that because of our crazy life, we have to adapt everything.  Todd had made a door between the closets of Brandon's bedroom and my office/spare bedroom/gymatorium.  So that at night when I sleep in my office/spare bedroom/gymatorium I can close our doors, and if Brandon is up he has to come through the closets and I would hear him.  We did that for other reasons too for when the boys were young, but mainly for wandering purposes.

If not for that door, I couldn't have gotten to Brandon before the seizure was over to keep his head from banging against the wall and floor.  To keep him from breaking his toes from banging against the walls.  To be there with him as he was thrashing his way through hell.

I share all this for one purpose.

Every word that I've written is something that vaccine injury changes in your life.  There is not one part of your life that will not be affected by vaccine injury.  Not one.

It affects -

Your health.

How you must live.

All you must adapt to.

All you must endure.

This is not a sympathy post for those already touched.  They know this hell, they live it too.  We pray for and encourage each other through it.  It's how we survive. And if we're lucky - thrive.

It is for all the others.

The skeptics, those who believe in Pediatricians and government health agencies over the painful lessons us parents have had to learn the hard, and totally on our own way.

It is for all those in the media saying Wakefield is a fraud.

For all those who will not show VAXXED.

For all those who think they don't need to watch VAXXED.

It is for all those who think the science has been settled.

That vaccines don't cause autism.

That they have saved us from the ravages of normal childhood fully recoverable illnesses.

For all those who read the truths we share and still think they're lies --

I pray you see this picture.

I pray you see the truth.

Read this story.

Remember this story.

Memorize this picture.

Before you too must learn for yourself whose truth you should have believed.

___

I got to Brandon before the seizure was over.

He was not hurt.

This time.

But I live with the constant never-ending sound of a clock ---
So many of my friends who have vaccine injured children like Brandon have found them dead after a seizure.  So many fears with each and every sound of a seizure.  Our only prayer in getting through them is that our faith might be a fraction bigger than those fears.  That our faith might trump seizure's fate.

I hear that clock every second of every day and during every seizure.

Tick

Tock

Tick

Tock

Wednesday, June 15, 2016

It ain't over yet.




I took this picture on a day recently where Brandon had 3 Grand-Mal seizures in an  8 hour period.  This warrior-son of mine - too tough for them to keep him down for long, yet not tough enough to be up and moving without wobbling.  So we laid there in his bed together and listened to his favorite worship videos.  For the longest time we just laid there holding hands.

 I took these pictures hoping that words would come with them for this blog.  And they did.  Thanks to Toby Mac and his song "Move, Keep Walking."

These lyrics, let them speak to you in whatever battle you are fighting with your child - as they minister to me in our battle against seizures.

Shout these words.

Shout them so loud the vibrations shake even satan.

Shout them so forcefully they land at God's feet in heaven.

Brandon - you are the strongest warrior I know.

Move.

Keep walkin.

It ain't over yet.

The Lord ain't finished yet.

We will win.

#VAXXED



Another heartbreak day

Feels like you're miles away

Don't need no shade

When your sun don't shine, shine



Too many passin' dreams

Roll by like limousines

It's hard to keep believin'
When they pass you by and by

I know your heart been broke again
I know your prayers ain't been answered yet
I know you're feeling like you got nothing left
Well, lift your head, it ain't over yet, ain't over yet so

Move, keep walkin' soldier keep movin' on
Move, Keep walkin' until the mornin' comes
Move, keep walkin' soldier keep movin' on
And lift your head, it ain't over yet, ain't over yet

Echoin' inside your head
Are the words that your sweet momma said,
"shoot for the moon, my dear"
So you took aim out of this atmosphere
Between high stakes and pump fakes
You're feelin' like you can't buy a break
I can hold your hand, but I can't turn your eyes to freedom

I know your heart been broke again
I know your prayers ain't been answered yet
I know you're feeling lke you got nothing left
Well, lift your head, it ain't over yet, ain't over yet so

Move, keep walkin' soldier keep movin' on
Move, Keep walkin' until the mornin' comes
Move, keep walkin' soldier keep movin' on

And lift your head, it ain't over yet, ain't over yet

Hold on, hold on
Lord ain't finished yet
Hold on, hold on
He'll get you through this
Hold on, hold on
These are the promises
I never will forget
I never will forget

I know your heart been broke again
I know your prayers ain't been answered yet
It ain't over yet, ain't over yet, so

Move, keep walkin' soldier keep movin' on
Move, Keep walkin' until the mornin' comes
Move, keep walkin' soldier keep movin' on

And lift your head, it ain't over yet, ain't over yet.

Thursday, June 2, 2016

VAXXED...in pictures.



My Life with Autism blog is my main blog...but I created this one for when words aren't really necessary.  I have chronicled my son's vaccine injury (excuse me, his "autism") through pictures and when I get a moment, I try and share them here.

With all the misunderstanding still about autism, how society is still woefully misinformed about it, it is my hopes that these pictures tell a story that "autism" - which for most of us is vaccine injury -   is anything but cute, anything but something to be celebrated, accepted, ignored, covered up...  For my son, it is leaky gut, it is autoimmune encephalopathy, it is seizure upon seizure upon endless seizures that split open his skin, shatter his teeth, break his bones, and knock holes in our walls.

Yes, we are blessed to have those few and far between moments of blinding light in seeing our son as God created him to be before he was fully and irrevocably VAXXED, but most often it is a life of challenge, hardship, and pain.  It is endless moments of leaky gut, incessant humming, aggression, self-injury, silence, pain, confusion, loneliness, financial ruin, discrimination, stress, trauma, and the list goes on.

Those rare moments of light, of seeing Brandon and not vaccine injury, are just enough to keep that fire going, however faintly it smolders.  Those rare moments of light in seeing our children as full of joy as they can be are to me, God's way of saying that no, He hasn't abandoned us.  He loves us and knows what we are going through.  Those rare moments are just enough to make HOPEISM something worth clinging to.  Encouraging us to never quit in the pursuit of the next such moment of light we might capture and cherish.

But make up for all the other times, they do not.

I'll stop with my feeble attempt at words - and let the silence of my son speak.

I truly hope you listen.

And hear from these pictures, what it means to be vaxxed.

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
  
 
 
 
 
  
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
 
 
 
 
 
 
 






~ ~ ~
With this next picture, I dedicate this blog entry to you CDC.  To you Pharma.  To you media.  To all of you who are responsible for this entire generation of children being #VAXXED.

Well said Brandon.

Well said.

The beauty of sign language well spoken.


I will NEVER QUIT trying to make right, this very, very, very, wrong done to you.

I love you Brandon...

NDCQ

HOOYAH