On being forged into a warrior mom

If I could summarize our journey from Hell to HOPEISM, it would be in my faith, which I call HOPEISM. It has been my weapon of choice to get me through each battle I have had to fight in my mission to win our war called life with autism and seizures. Vaccine injury to be more specific. It would also be in committing to heart, soul, & mind the words and motto's from Forged, NDCQ, the Lone Survivor, and Levi Lusko in his book, "Through the Eyes of a Lion." I will be forever grateful to the inspiration, encouragement, and mental fortitude found through all of them collectively. Because of that, I am not allowing this tragedy of vaccine injury that has come into our lives to be an obstacle to being used by God. I am instead turning it into an opportunity to be used like never before!

This blog is dedicated to Brandon. His life has been forged by difficulty, obstacles, & all too often because of seizures - pain, blood, broken teeth, & broken bones. Yet through all that he has shown such fortitude. The bravery, strength, & resilience of a true warrior. He taught me that having strength through adversity means that even if you lose every battle, like the Lone Survivor, you never quit fighting until you win the war. That in the words of "NDCQ," you keep "dreaming," keep "daring," & keep "doing." As Team Guppy has yet to be able to escape vaccine injury, we have no choice but to as Levi Lusko writes, "Run toward the Roar." God has indeed given us such incredible power in enduring such impossible pain.

Some days the HOPEISM in that simply takes my breath away.

June 27, 2011

Some Mad Hope

Sometimes our dreams may scatter
Our tears fall to the earth like rain
But Hopeism whispers
"I'm the rainbow"
 That will always shine after the pain.
(Michelle M. Guppy)

This picture captivates me.  It reminds me of a song by Matt Nathanson called "All We Are", and this Guardianship process I am beginning for Brandon.

I tasted, tasted love so sweet

I see my beautiful brown-eyed boy in the Angelic light that is him. Looking out the window on a Saturday Spring day listening to the hummmmmmmm of the neighbors mower. Content.

And all of it was lost on me, bought and sold like property

I see a beautiful brown-eyed boy whose light has been extinguished by the confines of an institution that has no windows to open or look out. Alone.

I live with both boys.
The present one - as free as we can reasonably allow him to be, in whatever way that we can. Like opening windows on a sweltering day so that our son can hum with the engine of the neighbors mower. We've since learned that neighbors don't know how to handle a grown boy walking beside their mower humming, so this is our compromise. No matter what the cost in air conditioning the block.
The future one -  if I don't plan for when I'm gone. As confined as someone dictates.  One where there is no compromise. No choice.  No freedom.

Sugar on my tongue I kept falling over, I kept looking backward, I went broke believing how the simple should be hard

It's hard to fathom how I, the mother of both boys who are but one, must prepare him for the freedom of total independence and self-sufficiency; yet protect him and plan should that not be after I'm gone.  Living life where Hopeism must sometimes meet reality.  Where the "Heck yeah!" of community must vigilantly train to kick the ass of the "Hell no!" of institutionalism.  It's a place I never dreamed I'd be.  A place I would never wish on anyone.  A place that's different for everyone.  A place I've come to for me.

All we are, we are, All we are, we are, and every day is a start of something beautiful

Brandon turns 18 in six short months.  For this short time I must momentarily abandon the single-minded determination that he will, with the gut-wrenching reality that he might not.  For this short time I must define freedom as protection.  Independence as choice. I must ensure no compromise in that.

I wasted, wasted love for you, trading out for something new, it's hard to change the way you lose if you think you've never won

I must sit here and stare at the forms filled out from those who have evaluated him, and not see my journal of where we started and how far we've come, but rather their diagnosis as 'poor', their 'numerical value' of what he can't do. Their 'determination' of what he will never do.  It's one thing to sit here and read those words. It's another thing to actually believe them.  I shutter to think that for wasted moments I can never get back, I believed them. The doctors, the psychologists. Who told me what could never be.  They heard me long ago asking why he banged his head on the wall constantly. But they aren't here now to see him laugh and giggle and smile when his dad wrestles with him on the bed each night.  His pain and solitude transformed into laughter and playfulness. For years they noted the milestones he never made, for years I've written about the hundreds of hearts in his life he's changed. 

'Cause all we are, we are, all we are, we are.  And every day is a start, of something beautiful.  And in the end, the words won't matter, 'Cause in the end, nothing stays the same.
I must now prepare to hear those words spoken in court.
I must now prepare to say those words in court myself.
How does a mother prepare to say the worse about a child who has only given her his best?
How does a mother prepare to take away the freedom of the one person in this world who has made her truly free?

And in the end dreams just scatter and fall like rain, 'cause all we are, we are, all we are, we are
I let myself cry.
Bitter tears that sting.
I've been here before.
The Pediatrician called it "Autism".
The ARD Committee said he needed "Special Education Services".
I'll no doubt be here again.

And every day is a start of something beautiful, something real
And I know from experience that it's only temporary.
I must accept this Guardianship process as just another stepping stone in our "Life with Autism".
Just another hurdle to jump over on our way to where we need to be.
The tears don't sting anymore.
They bring renewal.
The papers delicately sealed in the envelope to mail.
I chuckle.
I'm handling the papers as if it's my son I'm placing in there, not just a piece of paper.
I guess in a way, it is.
I take this decision, this process, just as seriously as I take my son.

All we are, we are, all we are, we are, and every day is a start of something beautiful, beautiful

I smile through the tears that still won't stop, to remind myself...
I'm not taking.
I'm giving.

As I listen to the song I begin to laugh as I realize that the title of the album that song was recorded for, is called "Some Mad Hope".  It should have been called Stark.Raving.Mad.Crazy.Good.Hope.  That's the kind of hope us Warrior Mom's have. The kind that cause us to have a paper shredder handy for when indeed, the reason for this process, these papers, is what's scattered; the shredded pieces falling to the earth like rain.

The tears stop.

And Hopeism shines.

Click here to listen to song "All We Are"


vlockwood said...

You inspire me to be a better teacher. Your family is in my prayers - as I pray for understanding myself.
Thank you.

vlockwood said...

You inspire me to be a better teacher. I pray for your family as I pray for understanding for myself.
Thank you for your exemplary honesty.