What freedom must feel like...

This blog in our "Life with Autism, Seizures, and a side of PANDAS" is meant for those times when the pictures speak more than any words I could write...

This picture, one of those times.

On our way to and from his day program, when he's in a good mood, he loves to lean his head out the window to feel the wind on his face.

It is those rare times that I look at him from the rear view mirror and wonder if he feels as free from his "Life with Autism, Seizures, and a side of PANDAS" as he looks...

If for those few brief moments he feels what freedom must feel like...

The emotion of that often chokes me...

In my continued prayers and HOPEISM that in this life he could be free at last from all the things that make this picture, a rare one.

The Other Side of the Fence

I hope these pictures haunt everyone.

They haunt me.

It's been a rare weekend where it wasn't totally overwhelming in caring for my son in his "Life with Autism, Seizures, and a side of PANDAS." 

In fact, all we had to care for was the autism.  Seizures and PANDAS took the weekend off I guess.

Thank you, Lord.

Brandon's daddy was next door helping "Neighbor Tom" trim back a bush that was hit hard by the "Houston Winter" we actually had this past winter.  Anything with a motor attracts the attention of Brandon -- and dad had a chainsaw which was the ultimate motor stim for him.

Brandon was perched in perfect balance on the landscape bricks and stretched himself tall enough to peer over the fence to watch - listen - and hum to the beat of the chainsaw.

Brandon was very much enjoying the present - but all I saw was the future.

I saw my son ever trapped in the confines of his autism - and I wondered if he ever thought about what could have been, what's out there over the fence, as I do...

I see myself as I get older with still few viable options for when I can no longer care for him.

What will be over the fence for us when that day comes?

I have looked.

Oh, how I have searched.

But everything I can see is out of our reach.

Even as I stand on tippy-toes of HOPEISM, the fence for the appropriate places still way too high to ever hope to get there.

Everything within reach, not worth climbing the fence for.

I also saw April right over that fence.

The month where all of us should feel that there will actually be something for our children over the fence --------

That something appropriate will be within reach.

But then much like Brandon's displeasure at me interrupting his moment of humming with a pesky camera ---

The look of reality....

How I will look all next month because of how April, National 'Celebrate Autism' Month - will be nothing but an intrusive camera sharing photo-shopped pictures of those who can already participate in life on the other side of the fence to momentarily disrupt our reality with a lit up blue fantasy. 

The Phantom of Pharma

It's been a while since I've shared a life with autism in pictures - picture.

But while I was going through some pictures I had taken this past weekend while we were all outside for the first time in forever - I came across this one.  The shading was just right and instantly the "Phantom of the Opera" image popped in my mind.  The mask he wore - the dark and light - the Jekyll and Hyde - the good versus evil...

It all applies...

I may never have seen the Phantom of the Opera -- but I know all too well the reality of the Phantom of Pharma.

And most tragically, what it has done to my son.

On the one side - such laughter and light.  How the light hides any perfections and makes his face so smooth, so serene.  So...perfect.  To look at him and be able to see the 'what was' before it was taken by the vaccinations that were neither necessary nor healthy -- is bittersweet.  What a priceless gift it is to see those few fleeting moments when our son is truly happy. To laugh with him and wonder what it is that makes him suddenly smile.  To long to hear him share the thought he had that made him laugh.  To be thankful for the rarest of moments when he seems to say to me, "This is your chance, I'm going to look right in the camera for you...you better be quick with the focus...it'll be a while before you get another chance"...   The opportunities when I am able to capture such precious moments, I am torn.  Thankful for the glimpse into his true self - yet reminded again by the deeply piercing and painful thorn in my side that reminds me that this moment truly is -- but a glimpse.

On the other side - the darkness - the pain.  The unfairness of what didn't have to be.  How the shadows seem to highlight the imperfections lurking beneath the surface.  The damage by what was mandated rearing its splotched ugliness on a daily basis. The hardship, the confusion, the silence, the seizures, the suffering.  The endless dark maze of trying to find that thing, that treatment, that something that will bring the light of HOPEISM to cast off the mask of vaccine injury and shatter the darkness forever.

I know this picture well.

HOPEISM on one side of my son, a bone-chilling haunting on the other side.

Pharma knows this picture well too.

They created it.

They market the light of what they want you to think their vaccines, their pills will bring.  They lure mother's with the shimmering promise and sparkle of health.  Then once that fairy tale doesn't end well, they disappear.

Leaving all who love the vaccine injured in their wake of destruction.

They pay off all around them to hide the darkness that they know and lie about.

Their prayers for you to go away as fervent as your prayers to bring your child back.

But what Pharma didn't count on, was that our phantom will no longer hide under an opera house.

Our truth will not lurk in the shadows.

It will overshadow their lies.

With a blinding light.


#HOPEISM

A Day to Remember...

I use my yearly "week by week" planner as more of a "life journal" than a planner... 

I mean, it's hard to "plan" anything when no matter what I write down that I need to do, appointments, etc -- "Life with Autism, Seizures, and a side of PANDAS" will laugh hysterically at that...   So many times I've had appointments written down in ink, only to wake up the next morning to Brandon having a seizure which essentially erases that day's "plans".

So I suppose this is more my diary than any semblance of a planner.

Each year when I get a new yearly "week by week" planner, I transfer all the significant events I wanted to remember from the past year, to that corresponding date in the new year...so that when that day comes, I can look back at that event and be reminded of all it meant to me...in the good, bad, or ugly.  The good events an encouragement, a reminder of  how God provided.  The bad and ugly events, well, something to simply look back on but not stare. As perhaps a reminder that God got me through...  How it was very bad awful, but I got through it.  How I survived when at the time I felt there was no way I could. 

And as you can see from the picture above, January 24th was a day to write in my planner/journal as a day to remember.  A significant event to be written down to not forget...

I wrote about the two events hastily scribbled on my planner in more detail on my other blogs.  You can read about the Brandon deck event by clicking this link and the event where I could have died by clicking here.

This post isn't about those stories because again, you can read them by clicking those links...

This post is about the picture.  The events that happened.  The day to remember.

It's as if God said to me that day, "Michelle, you know as well as I do, that before this year ends, shit will most likely hit the fan a time or two in your life with Brandon...things will sometimes be good, sometimes bad, sometimes ugly.  When those very bad ugly days come, remember this day.  Remember when I saved Brandon from what could have been a very deadly fall.  Remember when I spared you from a car wreck that could have taken your life... When you are in that pit of isolation and confusion and you feel you are all alone and I'm not there, remember that I was, in a very profound way.  When you wish I would do this or that, remember how I see the big picture.  How I did what you needed when you didn't even know it was needed..."

God and I have these kinds of conversations.  He knows me.  He knows my life.  It's as if he had to show me on this day in this New Year - how he is present, and how he will still be present come December. 
It's like, "Let's just get this straight right now...I'm here...I will always be here when you are going through times when you feel I'm not here..."
And there have been many, many, many times when I was going through something in this "Life with Autism, Seizures, and a side of PANDAS" that I did not think God was there.  Where I could not feel his presence or hear his voice.

This day...

This day was a reminder in this New Year that he is here.

And always will be.
We all have such "Life with Autism in Pictures" moments throughout the year where we feel we will never survive...we can't go on...

Allow this to be my reminder to you that those times will merely be "a day to remember" at the end of the year.  A day to look back on as that reminder how you indeed survived.

#NDCQ