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'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.
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"