Soul Surfing

Remind me, please, on the hardest days, when my heart is twisted in knots, when I see my youngest child, Sean burst through the door, his body wrecked with chaos and irrational anxiety, fingers bent into monster claws and tears bubble up like fountain spouts in syrup-y green eyes, that this too shall pass and that what I’m feeling is not shame, anger or frustration but connection. 

When his heart breaks mine breaks, too – shatters into a thousand tiny sharp edges, too dangerous to be picked up quickly and pieced back together. Sometimes I have no choice but to curl up in the pile of dust and broken heart and let go of “fixing” it.  I have to hold on and move through it with him on hands and skinned knees, through the jungle of what we have come to know as autism. 

When he moves, all herky jerky, like a spasm in a giant’s thigh, when he spins and pulls and runs away from me please don’t let me take it personally, but rather, remember he can’t bear the noises that rattle in his mind.  Keep in mind that I am an extension of him, as functional and critical as an arm or foot, I am along for the ride and need to hold on with all heart, not let go.  I can’t let him down.  I can’t let myself down.  We lean into each other, knees buckled pooling together our support.

When the doctor looks at me wearily over a thick file and tells me that things may get worse before they get better, remember that life is about taking it one day at a time. I don’t have the luxury of pondering a fairy tale future for Sean, but at the same time, I don’t need to live in a world of dread, afraid of what’s around the next corner.  The story has not been written yet about my boy.  I can hold onto hope.  I can live in the moment and let go of dire predictions and frightening prophecies.  Fear is paralyzing.  We need to keep moving through it, chin up.

And never let me forget the vision of his pale, freckled body swimming in the river, muscled arms and strong back like a slick wet otter breaking through glassy water, freeing him into a patchwork of glossy sunshine and Douglas fir shade,  his lips break into bliss, pink eyelids snap shut like shades.  He is like any boy now.  His soul stretches his limbs and chest, melting into the panting sun.

 Remember that he is so much more than a diagnosis – he is a boy first.  And don’t forget that we all carry hurt, exposed or hidden – a limp in a walk, a scar above an eye, a hidden wound in one’s heart.  It is our brokenness that remains our truth and our story – the tiny fissure in our body, the chink in our armor, where the light from the soul steals away and reaches out to take hold of each other – a desperate embrace.   

He is not perfect.  I am not either.  Nobody is.  That’s why we need each other – to hold each other up during the rough and unsteady winds, to weather it because together, connected we are so much stronger than alone.  There is room for everyone.  Keep some space open.  Remember, turn nobody away.  There is always room for another.