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?
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.
Hope.
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"

You're Still the One...

Dear Todd,

Believe it or not, I've been thinking about our Anniversary all week.  It seems neither you or I have had the luxury lately of thinking of such things amidst "Life with Autism" - let alone "Life" itself.  I even ventured to Hallmark during a time Matt didn't have my tan minivan, but even then there were no "Happy Anniversary" cards worthy of "Warrior-Married-Parents-of-a-Child-with-Autism".

But not to worry, your girlfriend Shania Twain came to my rescue.  Her song came on, and after crying through it, I knew that it would be my Anniversary card to you.  It says everything so well.  I sit here chuckling how clueless we were that day on June 25, 1988.  All we knew was that we loved each other.  We had the naivity of new Christians in thinking how when they took the plunge to follow Christ -- all would be well.  How that painful path to the cross by a bruised, beaten, and bloody Savior was only to be walked by that Savior and no one else.   How pain, disappointment, betrayal, and hardship was only for him to experience and us to merely read about!  How naive!  How wrong!

We knew we loved each other, but we didn't know love.  We knew we had plans together, but we didn't know God's plans. You can't know love until you have lived through it, as much as you can't know what lies ahead until you're there.  I think the actual "Wedding Day" is more a "Celebration of Cluelessness" -- in thinking you have your life ahead all figured out.  It's only with each passing Anniversary that you actually earn the right to celebrate "Love" and "Being Married".  I remember those first few years of "Cluelessness". The lines in her song "I bet they'll never make it" were things that I'm sure crossed many people's minds. Admittedly, including my own because for whatever reasons, that's all I've ever known in my life.  But then there was always you, the rock of our marriage then as well as now, answering with "but just look at us holding on, we're still together, still going strong". 

That has never been more true than after "Life with Autism".  It blows my mind how each year since that diagnosis, we have defied the odds of divorce.  It's high enough in just a "normal" marriage.  Throw in a hardship, it's even higher.  Throw in a lifelong disability, and we should be getting some sort of "Nobel Prize for Marriage" for sticking it out through all we have!  And we have stuck it out through a lot, haven't we?  To actually sit here and think of all that we have been through, - like we always say, "We can't make this stuff up!"  All the love, laughter, craziness, joy, sorrow, blessings, thankfulness...  Wow....  I think our most hilarious moments, at least for me, were when well meaning friends would invite us to marriage seminars or recommend books on marriage.  I chuckle thinking about that... There's a seminar to prepare you for the devastation of a diagnosis of autism, no treatments, and no help? I mean really, there's a seminar that demonstrates a husband coming home from work, sliding in a pile of leaky-gut poop, then sitting down to a frozen dinner, denied insurance claims, and mounting medical bills, right after that?  There's a "how to" book for tag-team parenting?  For surviving the "no vacation"?  There's someone standing behind a podium that has never experienced the degree of ongoing trials that a family like ours has, but who thinks they can really put together a power point presentation to teach you how to stay when everything in your flesh is screaming - enough!? Those topped only by the Christian seminar that shows you how to have a Godly marriage even though that couple can't even find a "Godly Church" that will accept and welcome their child with a disability. (Yes, laughter with a side of sarcasm is my marriage tip of the day!)

Hardly.

Certain things and certain situations you learn by sheer faith. By hanging on to hope when you have nothing left to hang on to. By living through them. And laughing despite them. By staying when you want to leave. By loving when you want to hate. By praying to God when you're tempted to side with satan.

I think we would both agree, that the best marriage advice is found in the lines of that song, "you're still the one I run to, still the one that I belong to, you're still the one I want for life, you're still the one that I love, the only one I dream of, you're still the one I kiss good night...."

That, and still being in Love with the Lord...
The only other ONE we both run to.
The only other ONE we belong to.
The only ONE we want for life.
The ONE we love.

Thank you Lord for teaching us about love.
Thank you Brandon for teaching us about life.
Thank you Matthew for teaching us about laughter.

And thank you Todd for "....ain't nothin' better, we beat the odds together, we're still together, still going strong, looks like we made it, look how far we've come my baby."

And how far we have yet to go...

Happy Anniversary Todd!  

(click highlighted link below to play video)

You're Still the One

Love Michelle