A conversation I would not have believed possible such a short time ago.
Impossible … isn’t.
June, 2006 …
I push my back into the leather car seat. Harder, then harder still. I’m desperately seeking resistance, solidity, anything that will somehow hold me in, tether me to the earth, transform the overwhelming emotion I’m feeling into something physical, something upon which I can push back. Something, anything that will keep me from drowning in this sea of unanswerable questions.
The doctor’s words made no sense. Autism. She said my baby girl had Autistic Disorder. Also known as Classic Autism. I roll the word around in my mouth – aw-tiz-um.
I am nauseous.
I look at Luau. He’s as lost as I am. I try to reach for him, but my body doesn’t move.
We don’t know yet.
We don’t know that autism isn’t a death sentence. We don’t know that half of what the doctor thinks she knows about it, and spreads as unassailable gospel, is complete and utter bullshit.
We just don’t know.
“She’ll likely live a solitary life,” she said.
“She’ll prefer to be alone,” she said.
My daughter is three. And yet somehow I know. Somehow, by the grace of God, I know that a white lab coat and a Harvard degree don’t add up to knowing my child. They just don’t. And the child that she just described is not mine.
Right then and there, just moments ago, in her tiny office on that awful leather couch, the seeds of defiant advocacy were planted in the soft and fertile ground of a mother’s terror and desperation. I don’t know yet that they are there, but I will soon enough.
Because I know my girl. I know that she doesn’t have the tools to interact with us in a way that we can understand; I know that our instinctive language and our experience of the world are different from hers, but I’ll be damned if either of those means that, at age three, we can write off her desire to engage with us or anyone else.
We came here for help. This isn’t help. This is finding doors ajar and slamming them closed. I won’t. I can’t.
We nearly ran out of that office, gasping for air.
And now here we sit in the parking lot, the gorgeous day mocking this all-encompassing pain. Because we don’t know yet. We don’t know that there will be joy. We don’t know that there will be laughter. We don’t know that as Brooke learns our language, we will learn hers and ultimately, we will create a third beautiful language that is all our family’s own. We don’t know that Brooke will be gloriously Brooke – a differently brilliant, funny, generous, uplifting soul who will delight in nothing more than the company of those whom she loves, and who will love us with an intensity that will renew our faith in God, ourselves and each other.
We don’t know yet.
But I do know something.
Just one thing.
The only thing I manage to say out loud.
“This will make us better people. All of us. You, me, Brooke, Katie. I don’t know how; I just know that it will.”
I don’t know why I was so certain, but at a time when nothing in the world felt knowable, I held to that one thing. That autism, if that’s really what this was, would make us all better.
I had no idea how prophetic those words would turn out to be.
Knowledge is power. Knowledge of one’s self is the greatest power of all. The journey to understanding my daughters’ (yes, both of their) experiences of the world from the inside out has been the most rewarding trip I’ve ever taken. Along the way, my understanding and appreciation of the entire spectrum of humanity in all of its gorgeous, painful, messy glory has evolved into the most wondrous gift imaginable.
I’ve been humbled and I’ve been lifted. I’ve been hopeless and I’ve been exultant. I’ve struggled when my children were in pain and I’ve celebrated the tiniest bits of incremental progress with the fervor of an evangelical preacher in witness to miracles on high.
I’ve learned about myself as I’ve learned about my children. I’ve discovered my limits and I’ve discovered that when it really matters, there are no limits. I’ve seen the value in – and felt the intense highs and lows of – a life lived unfiltered.
I’ve kicked pretense to the curb.
I’ve amassed an incredible group of friends, many of whom I never would have gotten to know had I not learned how to slow down. listen with my heart and learn their stories. My life, and my children’s lives are far richer for their presence.
I’ve become … better.
My children astonish me every day.
I am and will forever be grateful to them.
Because it is by following their lead that I have found my way.
I am a mother.
Diary is my story.
Photo by Connerton Photography, all rights reserved.
In other words, mitts off my pic, please.