On Refusing to Live Small

world in hand“I refuse to let her world be small.  I refuse to let her world be small.  I refuse to let her world be small.

I chanted rhythmically in my head as I heaved her eight-year-old body and the 50 pound oversized medical stroller through the rough hiking terrain; she alternately squeed in delight and grabbed on for dear life as I struggled over rocks, roots, and various forest detritus. There was a chill in the air as the sun’s beams struggled to stretch through the canopy above and reach us below in the shadowy underbrush.  We were going to catch up with the group in spite of the clear lack of handicap accessibility, my anxiety around taking a child who just had a status seizure two weeks ago into a remote wooded area, and the school’s hesitance to take her on the field trip.  Because, the only other answer would be to stay home and live scared of what could happen.

I refuse to live in fear; I refuse to teach her to live in fear.  I refuse to let fear make her world small.

The current state of the world calls us to live in fear.  We live in a seemingly terrifying time.  Week after week the walls of terror close in–shootings happen in movie theatersschoolsgrocery storesofficesplaces of worshipvehicles are weaponized against the pedestrian;  a murder happens in high school and classes remain in session for the day; and it doesn’t stop at death because even funerals are protested.  This past week alone two hate crimes occurred that killed two people at a Kroger in Kentucky and eleven at a synagogue in the Squirrel Hill section of Pittsburg.

There is fear that surrounds us and fear that arises with in us; it whispers to us and demands we hunker down and fortify against potential attack.  Fear calls us to protect ourselves from others and those who we view as potential threats.

Terror forces us to make our world small.  To live small; to think small; to be small.

I refuse to let my world be small.  I refuse to live small; I refuse to be small; I refuse to think small.

I refuse to let the external climate of the times frighten me into submission. There is too much at stake.  My children are at stake; our children are at stake.

Our daughter was born with a terrorist within.  A rare genetic disorder, tuberous sclerosis complex (TSC).  TSC causes benign tumors to grow in her vital organs, epilepsy, autism, and an endless list of other medical complications can occur across her lifetime.  It breeds fear and uncertainty; it steals any sense of safety and security for our daughter and for us, as her parents, raising her.  The goal of every terrorist is to make his/her victim’s world small and frightening.  TSC is different than a terrorist in there is no why and it has no goals, nevertheless there was a time it made our world very small and terrifying.

TSC made our world small until I looked into the eyes of our daughter and saw past the terrorist, faced the primal fear of losing her, and reconnected to the love that drives the all encompassing horror of potential loss.  The underbelly of the beast remains and the only difference is that I approach it with love and steadfast resolve:  I refuse to teach her to live in fear; I refuse to live in fear; I refuse to make our world small.

The lesson is universal, whether the terrorist is inside one’s self or in the world at large.  There is fear and uncertainty across the spectrum–from terminal illness, to mental illness, to chronic illness; to hate groups, divisive political groups, or the threat of lone criminals.  There will always be things in life in which we have an utter and complete lack of control.

The solution is acceptance of the very fact that we do not have control of everything.  It is to stare in the face of our fears and look past the terror to the wealth of pure humanity and love that remains in this world.  It is to embrace life and scream to the world:

I refuse to live in fear.  I refuse to live small; I refuse to think small; I refuse to be small.  I refuse to let my world be small.

I embrace life with love.

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