You are like a cold wind that blows through and rustles the last of the autumn leaves that cling helpless on the branches and herald the arrival of winter. Winter, the season of death and dormancy, is your friend. You seep through the cracks in our foundations like an icy chill. Perhaps like water, soft yet strong and forceful, ready to freeze as the hopelessness of winter sets in and drive those foundational crevices into deep canyons of pathos. And, as the sadness grows you feed on it; you grow ever stronger until your insidious presence can no longer be ignored. Foundations of joy, happiness, love, and hope crumble at your feet until all that is left is the gaping abyss of you–despair and, your favorite of partners, hopelessness. But, perhaps, not all that much unlike the cold winds that harken the winter white, you too shall blow past in turn and the world will bloom around you once again. That’s the thing with seasons–they change; and foundations–they may crumble and fall but they can be rebuilt. You too are important just as winter is to the world. But you are only to be a season for which joy and hope can return once again.
I grew up in a small town in the New England; it’s rumored that when I was born there were more cows in the town than people. As a teenager, pre-license, I resented the long expanses of subdivisions, corn fields, and barns housing dairy cows; they kept me from freedom. I dreamt of big cities and bright lights; art and music; most of all, I dreamt of freedom.
I dreamt of a place where I was free to shed the cloak of expectation that shrouded me and manifest my own destiny. Perhaps, it was not this at all, but rather, the familiar dream of trading places. Perhaps, I was caught in the universal theory of mind game–what would it be like to be her, or him, or anyone other than me in this stifling place?
When you grew up in a town where everyone knew your name they tended to also know your business. Ironically, nobody there really knew me at all. It was the strangest sense of isolation. I spent my life surrounded by those who had the utmost familiarity and simultanseous estrangement. It was the confusion of being met with the assumptions of others then surprising them, letting them down, or simply being completely misunderstood.
This was a strikingly similar experience to parenting a child with rare and extraordinary needs.
Recently, another mother of a child with rare disease told me that she never thought about running away when she was young; but that she probably thought about it way more than she should as a parent to a child with special needs. Her experience is not unusual. Research has shown that mothers of children with autism have stress levels similar to combat soilders. Who in our line of parenting wouldn’t at least imagine themself somewhere, or someone else? Nevertheless, she likely wouldn’t share her deep desire to escape or trade places with most of her mama friends (yet I’m the one who goes writing it on the internet for all to read) for fear of being judged or misunderstood.
Parenting a child with rare and extraordinary needs is like living in my childhood small town–there is a simultaneous familiarity and estrangement. Most of the people we run into in our day to day interactions are other parents who have some understanding of what it is like to raise tiny humans–there is a familiarity. Yet, our world is so very different than theirs; it is full of complex medical jargon, life or death emergencies, therapies on top of therapies, the bittersweet meeting of milestones, and milestones that will never be met–there is a complete and utter estrangement.
Much like my adolescence, parenting my children has been an isolating experience. I am surrounded by others who hold assumptions of what both me and my brand of tiny humans are and should be like. Over the years I have learned to brush the well-intentioned yet oblivious, parents aside, but it remains a part of my daily life to deal with doctors, nurses, therapists and school administrators who I must educate and shake free from their shackle of assumption in order to see me, but more importantly, my children clearly.
Perhaps hardest with which to deal is the desire to feel free–it is similar to that adolescent desire for freedom. Parenting children with excptional needs can feel stifiling. All parents trade some dreams to care for children and for special needs parents it is more than that. There is no end date in which you can say, “when my child is in kindergarten I can return to work” or “I will get my Master’s when my child is in middle school.” We are forced to surf the wave of our child’s needs no matter how capricious the sea. There is an inexplicable trapped feeling that accompanies that reality.
Despite the stark reality of parenting a child with extraordinary needs, there is great love and great hope. Unlike the dial-up days of my adolescence there are a wealth of resources online to find your Tribe of fellow parents and decrease the isolation. There is also freedom in the very imagining itself–to dream of yourself as someone else, somewhere else–and to run away in your mind–if only for a little while.
I used to dream of bright lights and big cities, art and music; unfortunately, I spend way more time than I would like in a big city, Boston, for medical appointments with my crew. Not exactly what I dreamed of; yet, I still permit myself to dream. I find the time when I can to get lost in my favorite place on earth, The Isabella Stuart Gardner Museum. I stand at the foot of John Singer Sargent’s, El Jaleo and I imagine what it was like to be the Andalusian flamenco dancer.
I trade places places in my mind’s eye and imagine myself deliciously free and moving to the beat. And, in that moment my burden is lighter, my dreams more vivid, and my soul reinvigirated.
I have a magnet of El Jaleo on my refridgerator. In moments of deep despair, when I feel as though I cannot meet the challenge that has been bestowed upon me, I imagine myself the great Andalusian dancer and I buy myself a moment of freedom.
How ironic that a woman forever trapped oil on canvas can make my soul feel so free. I guess that is the magic of dreams–we can imagine ourself anyone and anyway we want to be; whether that be far away from small town New England or the high-stress, high-demand world of special needs parenting.
“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.
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.
Mid-October steals my words every year since we received the diagnosis of Tuberous Sclerosis Complex for our daughter on October 15, 2009. It took me a bit, but my words are back and I hope to be writing more regularly again. Welcome back to those who I have been neglecting or welcome in general.
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).
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.