The Alphabet of Regret: A is for Autism

There are nights when I dream you whole.

When I imagine the myriad twists and gentle curls of your sulci as ocean: fluid and shifting, capable of surging into and over themselves and, in their course, reshaping these chasms of synapse and chemistry into a new world where the familiar taste of salt is only a memory — and where memory and language shift and shimmer and coordinate together as one and this...

this now, this endless now, and the terror of all that lies beyond,

recedes, at last, a blood-dimmed tide pulling silently from the shore.

The metaphor is not lost, not here, not when we greeted you with open arms and open hearts, brought you into our home and our lives aloft on feathers - we'd imagined feathers, downy and soft and infinite, borne of angels and lighter than air, floating free as snowfall and surrounding and embracing and lifting you up, effortlessly, through the subtle passage of years, our hearts wild with hope and wonder - a ceremony of innocence we'd waited trimesters to share together, us three, alone and awake and astonished at the promise of all we might create together.

Hope is a cruel thing.

Even when not given voice, the slippery forms of letters spilling over tongue, it is the spun sugar fleeting grace of baby's breath in winter air — the illusion of substance and depth sliding forevermore just beyond the farstretched reach of soft fingers with tiny nails, seconds away from being grasped and molded with skill and intuition and strange magics into a life that demands celebration. If only we might reach a bit further. If only the breeze might shift.

And it is, that, still, after a fashion. These infinitesimal steps and giant leaps, tender and hesitant and uncertain but brave beyond any bravery I'll ever know. These subtle moments when we sense ripples across the Sea of Tranquility. These thrashing, spasming, awkward hours when we wait and know there is a balance to be struck, and it is a price worth paying no matter how steep the exchange.

Do not imagine me ungrateful. There has been joy, scattered across the glacial motion of years like brittle seeds on cold earth. I count them back, one by one by one, a baker's dozen of birthday cakes and picture books, your face growing longer and leaner and aglow with fresh delight each time the paper comes apart and you find the gorilla's face looking back, round as the moon, hiding his grin as he steals the zookeeper's keys. I know your joy. I know it is real.

But long after you settle into sleep, after your eyes close and the stresses and torments drift away and you are free to follow the minnow-quick currents where they lead, and your mother collapses into a tangle of thick blankets and dreams she never shares, I lie in darkness. And at times, I find my way back.

Before the sun dimmed to gray. The grass faded to gray. The skies, my skin, the sound of your mother's voice. When I could feel the warmth of something great filling my lungs like a sudden burst of seafoam and saltspray, the world shifting cerulean and then amniotic, baffled from the concussive impact of light and sound and the knowledge that pathways may lose their way, grow tangled and die on hidden thorns.

To that night when your eyes opened and you howled at the world and the windows shook with your announcement, your statement of purpose: I am here, I am here, I am here. And we heard you, and we knew you, and we three - together - faced a horizon breathtaking in its scope, limitless in its perspective, wrenching in its beauty. 

In those moments, it feels like enough.

And then I awaken, to the gray moments before the dawn. A Caliban, monstrous and broken by worship of a failed god. Clutching at the remnants of all that was lost, or that I might once have dreamed real.

and then in dreaming,
The clouds methought would open, and show riches
Ready to drop upon me, that when I waked
I cried to dream again.

-The Tempest, Act 3, Scene 2

Comments

[jonniker]

I am so behind on the Internet, and I'm embarrassed about it.

But I'd wait a thousand times longer, a thousand times over, just to read this again.

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[Amber]

Talk about gut punches.

[Cocotte]

As a parent of a child on the spectrum, I totally relate to this. It's weird to give birth to a child, who in all appearances seems perfect, only to have your hopes/dreams crushed 3 or 4 years down the road......it's a grieving process to give up the child you thought you had. We are 18 years into it, and I will tell you, it is sometimes easier and sometimes harder.

[bea]

Oh my, just happened onto this post. My only child is autistic. Thanks for expressing so eloquently how it feels to love your child unconditionally and still mourn for what might have been.

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