Riding the Eleptiform Wave

by Valerie Turner

I have a boy who takes me to the moon.  And while I am there, I feel like one of those students from The Dead Poet Society, stepping up on the very highest of all desks and finding a perspective on life so novel and incomprehensible that I become utterly groundless.  Up on this desk, which is the moon, I can see that life does not take place in your brain, it takes place in your heart, mostly with your breath swept away.

The parenting books to help me navigate this journey have not yet been written.  The ones that have been written are better left beneath my feet, inside this desk, that my son Christian now beckons me to jump from.  Everyday we leap – from this desk - from this moon - never landing.  Whatever questions I thought I had become pointless, when all there is to experience is change.

Christian is almost eight years old now.  Developmentally, he’s probably three – add a year here, subtract a year there, splinter the skills, factor the IQ, compute the grade level, and print up those percentile points, please.  Christian has epilepsy.  He has multi-focal, complex partial seizures.  He has abnormal encephalogram waves all the time.  Attach 27 electrodes to his little boy head, and instead of a gently rolling sinuous brain wave, you’ll find a steep sharp spike followed by a lower more mountainous curve.  Witness - the eleptiform wave - a jagged and tumultuous ride, my friends – both inside his brain, where his thoughts flip and flop, and here outside where we all get on board and travel along Christian’s rollercoaster of a life, twisting and spinning in an electrical storm.  It’s exciting. It’s destructive.  It’s reorganizing.

It’s impossible for me to put into words who Christian is and what this perspective from the moon is like.  As if Christian were Buddha and the moon my enlightenment - to know him and to gain this perspective, you would have to experience him and take this path as his mother.  You would have to have your heart ripped out, replaced, opened up, thrown away, rediscovered, and resuscitated – then feel its pulsations, beat by beat, for all the seconds of the day.  And with every beat, you would find something new to behold and nothing solid to believe in, for his life is fluid and as impossible to control as the weather.

From the moon, I look down upon Christian’s days, feeling its pull on the tides of his life and the creation of all this weather.  He is born, and he is that naked gift of life, crying out and falling into my soul with all of his limbs and his beating heart.  He is nursing, lapping the milk and honey of life, and his sweet boyhood develops.  He laughs his way through his days, learns to dance as he crawls, and creates joy from an upside down box of Cheerios.  There is chaos, but there is elaborate, indescribable festivity.  We are all a bit unsteady with the frenetic energy he creates, but as it feels like life affirmed, we absorb it. 

Life moves forward, but in many ways Christian does not.  He crawls like a rocket, but doesn’t learn to walk.  We have him evaluated.  And the next thing you know, there is a teacher, an occupational therapist, a speech therapist, a physical therapist and a social worker, and they say, “He cannot understand, he cannot write, he cannot speak, he cannot walk, and he needs services.”  Our home becomes a village.  The professionals become our family.  Our furniture becomes their equipment.  Shaving cream and chocolate pudding become just two more modalities. 

One night, I hear Christian’s crib rattling and other indiscernible sounds coming from his bedroom one floor above.  I climb the stairs slowly, step by step, my heart pounding beat by beat.   I come to find my baby, shaking and puking with eyes deviated left and a mind abandoned.  My brain makes room for one thought – this is a seizure – and after that, there are only voices, sirens, lights, white jackets. They pound on his chest.  I howl like a dog. 

Three days later, Christian comes home and cries from an unknown place of wisdom when his house and sister come into view.  He is safe. He goes to school.  He takes long rides on short busses.  He receives medication.  His nervous system screams from the inside out, as his sensations explode with insatiable desire and discontent.  It is as if someone has turned all of the dials of his perception down to zero, and in order to feel anything inside of him, he must take in one thousand percent more of the world outside of him.  He pours that world into his body like drops of water into the mouth of someone lost in the desert for days and days.

But with the fierceness of a flower, pushing its petals out to reach the sun, Christian finds ways to blossom.  He finds ways to walk and run and climb.  See him skipping along the rooftop there?  See me lose ten years from my life with my face as white as a ghost?  See him hose down my living room.  See him smash eggs on the couch.  See him finger paint the walls and the floors with his own feces, then ride his Thomas the Tank Engine through the sludge.  See how ugly a beautiful life can be.

See how there is no place on the ground for feet.  We have to jump from this desk that is the moon to make sense of anything at all and fly.  We fly, and Christian grows.  He speaks.  He imagines.  With bouncing hair, he dances, and with all the wrong notes, he sings. With scrambled words, he teaches the only thing in life that matters - LOVE.  And he teaches – LIVE.  If there are eleven pairs of underwear there, wear them ALL.  If your pants are on backwards but are not falling down, then go PLAY.  If you wake up and find cookies, EAT.  And bring some to your little brother.  There is no winning, no losing, no judging, no hurting, no hating, no blaming, no right, no wrong, no rules, no dogma, no ego, no past to hold on to, no future to grasp, nothing but the present moment.  From high up on his desktop, he hollers - “Carpe diem!  Seize the Day!” – and does a cannon ball.

I have a boy who takes me to the moon.  I trail behind him, not merely on the road less traveled, but on an eleptiform wave.  It’s a fast and furious track, full of breakdowns and rebirths that awaken the heart.  I can’t stop the ride, but along the way, I have learned to chop off a spike or two and wield it as my sword, as together we learn to suck up the bumps - fighting our battles as warriors of the heart, blazing trails that the mind has no use for, taking leaps without any certainties.  We are sliding along on a slip of the moon.  We are falling up and we are falling down.  We are riding the eleptiform wave.

Comments

[hmw]

I have read this so many times and each time... it's brought me to tears. I hope it is appropriate to tell you that in various details, I also see my daughter, I see the last four yrs of our life... I relate so closely to what you have lived and to read about another's experience in this is so very moving. You are an incredible writer and this piece is wonderful. Thank you so much for sharing this with us, for allowing us to see your son for who he is, the challenges and the joys and how this has defined your lives.

[Renee]

Val, this is incredible. Your words again describe things so beautifully and understandably. You definitely have a gift.

[Amy/Manec93]

What a moving piece. Articulate, intelligent, inspiring...humbling.

Thank you for sharing.
AW