On Community

insomnia

The chirr of crickets drifted in the window above me and reached through the dark for my ears.  The pillow case scratched against my cheek, cheap and rough, and I lay eyes drinking in the darkness and waiting for sleep.  My mind wandered through the solitude and I thought of the crickets; crickets who stringed their tune in loneliness–calling out–until their trilling hums united in a wondrous symphony that painted the soundscape of late summer’s night.

My thoughts hummed in solitude like the lonely song of the cricket, and I imagined the thoughts of those lying eyes wide and sleep eluding painting the mind-scape of the night.  All people’s reflections so very different–thoughts of longing, of love, of loss, of guilt, happiness, hope, of joy and sorrow–thought in the shadow of lonesomeness.

Only the most precious, complex, and perhaps dangerous rumination are capable of robbing one of sleep; and we, the parents of the rare and extraordinary, are faced with such pondering often.  Life for us is inherently isolating and lonely; it is lived at an incredible pace; the trumps and struggles are of such a magnitude that it bleeds into the solitary hours of the night.

Rumination like a cat burglar snuck up on me, the unsuspecting victim, and stole sleep only to leave a pervasive state of underling fear and uncertainty.  I was feeling especially lonesome and unsteady as of late.  Both a cherished friend and some close family moved many states away, we made big decisions–such as the one to place one of our children in a self contained classroom–a change in school for both kids, and new diagnoses and ever shifting medical concerns for the children weighed heavy and left us more isolated than usual.

Over the years, Tuberous Sclerosis Complex (TSC) and the other exceptionalities of my children have laid waste to my career outside the home, many friendships, our hopes for a bigger home, and more.  When the kids were young, it was easier to still enjoy some of the same pleasures as parents of healthy, neurotypical children–playgroups and jaunts to the park–but as the years passed and she has remained frozen in time and development we are no longer able to assimilate in that which is built around the typical family as easily.  Our life became more and more extreme–outbursts, prolonged hospital stays, severe financial strain of raising children with exceptional needs; and, the stress increased exponentially.  As the stress increased, our ability to attend social events and lead outgoing, independent social lives outside our family became less and less–forget trying to find a babysitter!  Our days were spent at therapy appointments and ABA, we missed birthdays and barbecues, let down friends and family over and over again.  Some friends fell away, we were blessed to find some new, yet our world seemingly became smaller and smaller, lonelier and lonelier.  I became like the solemn cricket singing out to the night sky in search of another of my kind.

It was easy in the dark hours of the night as the warm September breeze blew out the summer and in the fall and the air settled like a heavy sadness to mourn it all in solemnity.  There was truth to all of this and truth is never a singularity.  For all that TSC and the extraordinary vulnerabilities of my children have taken, for all the isolation, I have also been bestowed many gifts.  I was reminded of this as I listened to the symphonic harmony of the crickets; we have been gifted a camaraderie and community (among other things).

TSC Wave
Power of a wave

Like the very image of waves driven in ink deep into the layers of my skin that connects me to the other parents of children with TSC who bare the same marking, though our stories may be very different, we gain strength from our connection and unity in our rarity.  My thoughts shifted from my deep seclusion and the wreckage of the day–another school disaster, another betrayal by a person entrusted to service our child, and the havoc that rolled down the line–to the village of people who swooped in to help.  There are times when I am buried so deep in the difficulties of our life that I fail to hear the chorus around me.

In one day we had a caring new friend, who knows very little about our sweet children but has been open and accepting of us, alert us to the school issue, my darling best friend–my person–support us with calls and emails and legal research from her hurricane ravaged neighborhood many states away, and another dear person offer to make the cupcakes that I just won’t be able to make for our son’s birthday on Saturday.

I am not alone.  We are not alone; and we are alone.  That is the crux of life.  We are all simultaneously alone in our plight and surrounded by humanity.  We are the solitary cricket chirring a call to his fellow cricket yet surrounded by the deafening cacophony of chirping in the dark summer’s night–alone and together.

I settled in with a new recognition and appreciation for the deep and spreading roots of community we truly have; and, with an understanding that when I feel isolated, misunderstood, and alone in this rare and exceptional life that all I need to do is call on those connections.  That I have people willing and able to rise to the occasion.  And also, that call need not be literal or external; it can also be an internal grounding in the roots of community and the love that surrounds our family.  Because, there are many times when I will still very much be alone in this and that is ok–alone and together.

We are all so much more alike than different.  We are all so much more valued and loved than we will ever know.  We can all call on that in the darkest hours of the night–when the crickets hum, thoughts race, and sleep eludes.  Rest peacefully in the chorus of community.

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