Have you ever felt on the edge? A razor’s width away from the world crushing you? Have you ever thought maybe you should let it? Have you ever wondered what would happened if you stopped holding it up, like enduring Atlas, and let the sky fall?
Of course you have, because you are like me–blessed and burdened by circumstance; you are a parent of the extraordinary. The weight is unimaginable and the task so tiring; for who can hold up the world and the sky?
Nevertheless, we persist.
What is the alternative? For the sky to come crashing down?
It does that anyway; it falls with every crisis, every diagnosis, every meltdown, every school meeting, every stare, every medication failure. And, that is why it is our job to hold it up. It is our job to make sense of it all every time the earth shakes and another crisis rips the heavens from the firmament. It is our job to piece it back together–azure patch dotted by fluffy white, patent-leather black pin studded with shiny bright diamonds.
We must make sense of it for our blessed and burdened, extraordinary pieces of heart walking around outside our chests. For, if we didn’t there would be no understanding, no up or down, no hope. We would be crushed by nature.
Who makes sense of it for us–holding the earth and the sky, picking up the pieces, placing the stars back one by one? Who makes sense of the nonsensical? Who helps carry crushing burden when we fear it will flatten us? When we are weary and we wish it to?
I do. We do. We shoulder our burdens together because we are the few who can understand the job–the immense burden and blessing. We link arms and hunch shoulders to disperse the weight as we speak of the crises, and diagnoses, the meltdowns, and meetings, the stares, and medications. We stoop low and scoop the scattered stars and shattered blue canvas of sky the next time it comes tumbling down and help to paste it back up again–and again, and again.
Nevertheless, we persist.
My hair whipped back and forth rhythmically, stray strands tickling the tip of my nose, as she squeed with delight.
“Fresh air!!!! Aahahah! Hahahahahaha!!”
The dark road stretched before us as the individual lines of tree trunk and limb blurred into mottled earthen browns, yellows, and greens; cars whizzed streaks of metallic hues; the world spun around us as we continued windows down, wind rushing in. The sound of rushing air and passing traffic was surpassed only by her delighted squeals. She erupted in spontaneous song; it was an exercise in pure and ecstatic joy. I felt my shoulders slacken and melted into the drivers seat–the hint of a smile crept across my face.
For me, the car is a 2,000 lb torture chamber; it signified everything tortuous, dangerous, and arduous about the day to day managerial parenting of a child with Tuberous Sclerosis Complex(TSC) and accompanying exceptionalities. I used to love to drive–the freedom, the escape, monotony, the sense of adventure–and it was yet another thing that TSC had tainted. Driving was a task, a risk, a means to an appointment, a tense, fast, emergent drive to the hospital, it was an interrupted family outing dashed by another seizure; I drove hands muscles tensed, knuckles white, nerves raw, and adrenaline flooded.
All of this melted away as my body loosened and swayed with the movement of the road; she was happy–ecstatic, in fact–and that was all I ever wished for on the darkest of days was for her to know happiness.
Cars blurred past and Kelly Clarkson wailed on the radio. It was early October and I was driving, belly round and in the way, headed for another glimpse of our growing girl. It was bitingly cold for October, clear and beautifully autumnal. We were headed out to start the celebrations for my husband’s best friend’s wedding the next day on the Cape. The world was hopeful and full of beginnings.
I undressed and lay on the cold table of the ultrasound suite drinking in the floating images of our little girl preforming her water ballet. We fought over middle names and barely noticed the solemnity that fell over the face of the sonographer. She became quiet and was concentrating taking picture after picture, measurement after measurement. She invited me to sit up and I did so smilingly; she informed me that there was something wrong with our baby’s heart and brain and that she needed to immediately call the maternal-fetal medicine specialists in, specifically the cardiologist. I was instantly furious; I couldn’t process; she was wrong and how dare she say without certainty that my baby girl had multiple tumors in her heart and some brain abnormalities.
The minutes stretched on for hours. My husband magically put himself aside to calm me until the specialist came. I again had to submit to for more images of the sweet child swimming around innocently inside. Then came a march of medical students to view the “abnormal fetus” and word after word levied like blow upon blow of mortally wounding weapon; they were giving her a death sentence. These m*therf*ckers in their white coats with their fancy degrees were talking about my child–our child–who was dancing around on the screen–lit up like stars in the sky, already the apple of our eyes– calling her a fetus and talking about fetal demise–robbing our cradle–without even knowing our names or looking us in the eyes, offering what they equated to a death sentence and they sent me home with a diagnosis that these m*therf*ckers didn’t even pronounce correctly–tubular sclerosis.
I just wanted her to live.
Beyond that, I just wanted her to know happiness.
I sobbed and sobbed and sobbed until I had no breath left in me. Then snow fell from the sky. Snow in early October. I thought it was a very cold day in Hell indeed.
The elevator catapulted me back up to the 17th floor. My shirt flew up and ballooned ever so slightly at the bottom as we went up–it reminded me of the wind blowing in the car window. The doors opened to the aquarium-esque elevator lobby outside the locked doors to the children’s unit; it filled me with dread and a macabre sense of joy simultaneously. Ellison 17 is a little slice of home–we’ve slept here, cried here, rejoiced, played with both our babes, railed against God and the cruelty of the Universe. I was buzzed in and ran back down to our room. She smiled chubby cheeks pushed in even more by the enormity of the gauze-wrapping turban that kept the EEG leads in place on her head.
“Mama! I made a duct tape purse with Hole in the Wall!”
“It’s so pretty, baby! Look what I found,” and I pulled a huge stuffed Darth Vader I got on Target clearance from my back pack.
Her eyes lit up and she clambered to grab the villain. I snuggled in next to her in the hospital bed, barely aware of the small computer on her back that was hooked into the wall by a wire, or the camera lauding over us like the Eye of Mordor recording every small quirk in movement to correlate it with the computer recording her brain waves.
“You want to play Dr. Panda on your tablet together or with your Ryan’s World figures?”
She snuggled in tighter. “Make a magnet house for Ryan.” She smiled, as best she could, ear to ear.
This was our normal.
Nine years past the coldest October day my soul has ever experienced and I still think of it often. What I think of more are the resounding giggles that rise from what seems like the base of her very being and erupt out her mouth like a joyous bubbling fountain when the air rushes in and whips across her face.
On that day 9 years ago, I just wanted her to live, my only other wish was for her to be happy. It has been my wish every time Tuberous Sclerosis Complex has tried to take her from us and every time this world and her body challenges her: let her live and let her live happily. Because, from my mind’s eye it seemed impossible to live happily with a body attacking itself with tumors and errant electrical discharges that overcome one’s brain and cause one’s body to go haywire, and with life threatening emergency after life threatening emergency. This is why I drive white knuckled and shoulders tight and walk around raccoon eyed on the daily.
And, she is a fount of ceaseless joy for me. I am reminded again, and again, by her that the purest of things–the sweetest, most exuberant emotions–can spring from the simplest, most unexpected places if only you let the window down a bit and give the breeze an opportunity to blow across your path.
There was something about the late September sky and the clear day–the sea of blue interrupted only by clouds of fluffy white juxtaposed against newly wheat-colored grasses. It was like an expansive ocean washed across the sandy beaches of land. Warm breezes blew rustling the drying grasses and harkened change. Every year I welcomed September with excitement and trepidation; and as the sun tickled my nose and I drank in the firmament I knew this year would be no different.
The time expired on my brief contemplation of the beauty of autumnal awakening; the door creaked as I wrenched it open, hands over-full (as usual), little voices came back into focus flinging the word vomit in my direction.
Buckled in and on our way my September baby resumed his word barrage: “My birthday Mommy! My birthday is soon! I want a Percy Jackson party and we are going to make Camp Half-Blood necklaces and we can have sword fights and I can dress in armor and I want a projector for my birthday that projects things onto my walls and ceiling and I’m in the Poseidon cabin and we need to pick cabins like we did last year when we sorted my friends into Hogwarts houses at my Harry Potter birthday this is going to be so cool! Mommy! Mommy!! And I want you to make mini Poseidon figures to go onto my cupcakes or maybe we can have a cupcake cake or just a cake. Make sure you get my bro* his allergy cupcake. Mommy! Mommy? Are you listening?!”
*his best friend
My head swam through the expanses of crystal azure above cut through only by the dark asphalt scar I drove down to our next therapy appointments.
Shoot. I was caught out. He was talking and it was all muffled Charlie Brown teacher like.
“Yes, bud. Sounds good. Except maybe something you said about the cupcakes sounded a little complicated. We may need to be flexible about that.”
He resumed the machine gun word fire and my head continued to swim as we pulled into the parking lot to split up. My husband waited to take one kid to one therapy as I took the other to another. We unloaded, arms overly full again, save for a few fingers for sister to grab as we traversed the parking lot. The smell of apples was in the air.
“Mommy, you heard me right?! We can do all that for my birthday?” he said.
“Probably, buddy. We’ll talk about it when we get home.”
We exchanged quick hugs and kisses as he climbed into the car seat in my husband’s car. The husband and I said a quick hello and an even quicker goodbye; only enough time spent together for a graze of each other’s hands to meet–not even a hug or kiss. I retook sister’s hand in mine and breathed deep; smells of apple and dry grass filled my lungs. And, I was transported back.
God, I love and hate September.
As I breathed in, the smells carried me back to the carnival, belly round with baby, and toddler in tow. She was dressed in bright pink pants and a chartreuse shirt that hid the Holter monitor (heart activity monitor) attached to her chest–cheeks chubby and slightly chapped (from teething and messy food)–as she rode in her brown stroller. It was the last weekend we spent as a family of three. I remember it viscerally; the sheer terror mixed with unbridled excitement and joy–wild and bright like the September sky.
We sat her on a bright red tractor to take a picture and to let her play with the steering wheel and buttons. Suddenly she was slumped over on one side and rigid on the other, arm slightly shot up, and I rushed to press “record event” on the box attached to my bionic baby while making sure to hold her so she didn’t fall off the tractor. I whispered a silent prayer to the cosmos, because by then Tuberous Sclerosis Complex (TSC) had stolen any belief in an omnipotent and benevolent being I had left, that it really was “just” her heart and some weird kind of fainting episode. My gut knew better. These were seizures. Seizures of the worst variety–infantile spasms.
Panic suffused my being: How was I bringing another life into this chaos? What if the baby squirming around my now tightly compacted abdomen was also born with this devastating rare genetic disorder? We had all the testing done and knew that our beautiful girl’s case was a spontaneous mutation; a base pair deletion on her 16th chromosome with a frame shift. A completely random slip up in her DNA that made it like her cells were dialing the wrong phone number–as though my body rang up a terrorist when it knitted her together in my womb.
A 1 to 3% chance that it would happen again was what we were told by all the experts. He had been watched closely for signs by multiple peeks inside the womb as he grew. There were no signs. But, there was no trust when you unknowingly weaved a terrorist into the cells of your sweet baby girl. The world became topsy-turvy. There were landmines under bright red tractors at the local country fair. That was the world we were bringing him into.
September stole my breath.
The door to the old farm house in which her therapy was held squeaked open and someone slipped by us as she squeed happily almost tripping them on our way through. I slid down on to the slippery cool leather of the couch and was again transported back.
I gripped the arm of the pleather chair of the hospital waiting room, white knuckled, and looked him dead in the eye: “I can’t do this. I want to go home. We’re not doing this today. He’s staying in there.”
He calmly said, “He has to come out somehow. And you have to have a c-section so it’s now or soon. It’ll be ok.”
In the room, I stared out at the clear blue waves capped by clouds of white foam in the September sky, draft blowing through the back of my johnny gown mimicking the breeze rustling the leaves, and every cell of my being vibrated with fear. I had grown accustomed to living with a terrorist. In the startling quiet of the prep room, I steeled myself and time stood still; til it was shattered by the sweet sound of his shrill newborn scream.
September breathed new life into me.
She hopped onto my lap despite the expanse of couch that spread horizontally from me and turned back, as she so often does, to put her face so close I could feel the moisture of her exhale. Her face widened as she smiled, eyes squinted by the pudge of her cheek, and she examined me.
Her smile the same as always; as though frozen in time and transported through Septembers from atop the red tractor to atop my lap on the well-worn leather waiting room couch. A smile so innocent and carefree you would never know it lived along side a terrorist; that it has survived heart failure, infantile spasms, status epilepticus, years of a ketogenic diet, and more in her short lifetime. The smile that welcomed a brother to our clan and dubbed him “bud-dy.”
Therapy was over for the night, we were home safely, and the September sky was painted ablaze with the fires of sunset; the air in the house smelled soapy clean of bubble bath and the sound of giggles echoed off the walls.
“Moooooommmy! It’s gonna be brudder’s burfday soon!” she shouted.
He ran past milky skinned and rosy cheeked–still holding on to the cherubic looks of early childhood–and I was suddenly struck by the magnitude of my love for him. And, their love for each other. They ran through the house full of giggles and shouts challenging the dark corners, and the terrorists with in and with out. I contemplated how that love changed me and how I deal with those terrorists. It is a love so strong, “you did not know you were capable of feeling, primal and angry and powerful, you would kill ten men and Satan if you had to.” A love that looked a lot like bravery.
September made me brave.
Sometimes bravery is as simple as a smile. It is bringing a toddler, your belly round, to a carnival, despite her Holter monitor, your own fear in tow. It is birthdays and brothers. It is love. It is living along side the terrorists because there will always be something to fear. Bravery is living your life anyway. It is bath time and rosy cheeks. It is clear blue skies with fluffy white clouds and American flags blowing in the breeze because we will not let them take away our freedom.
Bravery is a six year old little boy looking into his mother’s eyes and asking, “so you’re way older than me so when you’re gone and sister and me are older, and she can’t drive, am I going to have to drive her everywhere? Am I going to have to take care of her?”
It is being flabbergasted and saying, “There will always be someone to take care of her and if you want it to be you it can be but that will be your choice, and you will have lots of time to make that decision when you are a lot older, buddy.”
Bravery is living in the ambiguity–the never knowing if you made the right choices. It is having a second child after a tiny devastating deletion in DNA in your first. Bravery is quiet resolve. It is fear and love. It is primal, powerful, and angry–the will to kill ten men and Satan if you had to–or it is not.
Bravery is September.
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.
Sun caught my glasses and reflected brightly, the glint snapped me from my momentary space-out. I was firmly back in the stale conference room, at the crowded table, sat in a chair feeling oh-so-small in my decently large body surrounded by administrators delivering the unpleasantries that had broken my trust once again. The daydream of whirring cogs brought on by the janitor and his humming waxer outside the room seemed preferable. I imagined myself getting caught in the spinning gears, limbs haphazard and jammed in the machine, everything halting to a complete stop. The daydream metaphor seemed apropos.
I was here before, I am here often, and I, sadly, would be here many times again. Here being the place where I must trust a system with that most precious to me. All families of the extraordinary and rare are forced into such systems. In fact, my family, like all those other families, has been reduced to a cog–a component–in the machinery; we are confined and operating within several simultaneously running systems. We are at the mercy of these systems because they are an essential to our children’s survival; trust in them has become a necessity rather than a treasured prize that is earned.
I attempted to tune back into the school administrator’s voice despite my crushing disappointment and rising anger–a mother’s strong defensive reflex for her child is a near impossible thing to suppress. It is a craft that has taken me years to master. When my girl was young my anger at the systems we had been thrown into–insurance, medical, early intervention, state agencies, etc.–boiled over, and I would rage against the machine. Gears and cogs would grind to a halt and all the wrong doing on the part of the system would be placed upon me and my anger. Trust was an impossibility; I knew trust as something earned for reliability, truth, strength, mutual respect, and none of this was present within these systems. Within these systems was a huge differential of power, obfuscation and irresponsible practices, at times, and, at others, there could be beneficial assistance–nothing was reliable.
Back at the table, my reaction must remain suppressed; there was no room for the natural, the primal, the emotional, in a machine, and that was in what we were working. I remained stoic and betrayed no hint of disapproval in the system; special needs families must be like Tin Men soldiers, no hearts, and no tears to rust their working parts.
A thrum from above announced the impending rush of cool air from the vent; it reminded me to remain cool. Only those with the power are allowed to openly express the emotion involved when the system chafes them. There are rules and we had to work within the rules provided; and I had to trust, once again, that the rules would be followed, even though the very meeting we were having was about the people who hold power over me and my children, who are entrusted to provide my children with the services they need to thrive, their failure to adhere to those rules.
The administrator let out a long moaning sigh that sounded like the whine of a broken machine. Her face looked tired and I read a hint of defeat in her expression. Perhaps the whirring of the cogs was maddening to her as well. I imagined Mitt Romney and his ridiculous, “Corporations are people, my friend,” comment; this administrator was a person stuck inside the enormous machine they call the American Public Schools.
“The Public School System is a person, my friend,” no more than is a corporation; but the people within each are. And, as her monologue was interrupted by the shrill sound of the bell system, still set though it was the last waning days of summer recess, I thought there was no possible way that this woman entered into this system to deprive my daughter of the resources necessary for her to succeed. I had to trust, because that is where trust is built, person to person, within a relationship; and I opened back up to what she was saying and settled the rising tide of reflexive mother’s anger.
I’ve begun to learn this lesson ever so slowly: place trust in the people within the organizations worthy of it and never expect that the system itself will be trustworthy. Trust enough in the people within the systems for their expertise to lift your burden and help, but never so much to let it override you self assuredness, gut instinct, empowerment, and advocacy for your children. Remember that people enter into these helping profession systems because they want to help people and they are just as stuck in the machinery as the families who are trying to utilize the services.
The school had let my daughter down again and, by proxy, me; this was not the first time and it would not be the last time that my trust was shaken. I pushed my feet hard into the floor and grounded myself when the administrator ended speaking and I began from a place of guarded trust that she within this particular broken system would do her best to right the wrong. I clearly and calmly addressed step by step what we would accept to correct the wrong and left; that’s the only way I have found to break us free from the insidious grip of the multiple systems wrapped so tightly around us for such a great majority of our family’s life. I walked out into the sunshine, collected my children, and we enjoyed our day outside the whirring of gears and with in the fantasy of play at the park.
Her eyes are a mix of brown and green surrounded by a grayish blue, like tiny wet marble models of our world; they are mysteriously old like the world itself and hold eons of the unknown. I could stare into her eyes endlessly, if she kept still long enough for me to do so. She is breathtakingly beautiful, perfectly imperfect, wild and free, and tragically broken just like our planet.
Water leaked from the blue ocean iris of her eyes, “Mommy! It’s hard!!”
The salty water streamed like rivers breaking the dry sand colored surface of her cheeks and I had to look away before answering her. “Baby, I know; and, you can do hard things.”
I turned back to face her. The earthen-clay color of my eyes reflected back in hers momentarily. I wasn’t lying, but still I had trouble holding her gaze. The truth was she did hard things every day, all day. Most things for her are like trying to grow crops from drought starved fields; difficult and seemingly impossible. Yet, miraculously she grows; like the verdant sprouts that eventually blanket the most unlikely of parcels.
Everyday I wish things were different for her; but, that would be like wishing the wet marble we live on was not brown and green surrounded by a grayish blue.