Light crack breaks
Like dawn through the door jam
Spinning rumination halts mid worry
Small voice asks for a glass of water
No one is afraid of the dark;
They are afraid of what it hides.
Light crack breaks
Like dawn through the door jam
Spinning rumination halts mid worry
Small voice asks for a glass of water
No one is afraid of the dark;
They are afraid of what it hides.
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.
Light sleepily stretched in through the curtains tickling my nose; it was a nice contrast to the blare of my alarm. Summer days were waning, though the heat gave no signs of giving in, and school days had arrived.
He burst into the room and I knew by the sight of his face that something was already amiss. I asked sister to scoot back into her own bed; she lay limbs akimbo next to me. She huffily popped up and went about her business like a volcano rumbling to life; yet, another symbol of things to come.
Brother settled in and buried himself in me. Moments later out spilled every fear great and small that was packed into his tiny body; it escaped like a torrent through his mouth and flooded the room in a thick heavy anxiety-ridden smoke that choked and colored the sweet morning light in frightful shadows. His head was heavy on my chest; it rose and fell with my breaths and his fears weighing as heavily as his precious crown. I wished this had at least waited until coffee; life never waits. As his mother this was my job and as much as I fear everyday that I am not enough I had to steel myself for him, coffee or not, and surround him in love.
Through the smokey fears I focused on the clear blue of his eyes, slowed my breath, and settled him–co-regulation in fancy terms. I remembered not all battles are won by overpowering, battling and beating the enemy into submission; and I helped him chase the fire breathing dragon of fear creating all the smoke by asking question after question–“and if that happens, then?”–until we landed at his ultimate fear. And then we surrounded that dragon with love. Kay Redfield Jamison wrote, “The Chinese believe that before you can conquer a beast you first must make it beautiful;” in a way that is what we did. Slowly he rose and we moved along.
A wise woman once told me, “mixed seems to be life’s favorite mode.” Nothing is more true in the life of the rare and extraordinary. The diagnoses both my children carry bring with them simultaneous tragic and burdensome hardships as well as tremendous, unique, and phenomenal gifts. Life is in the “both/and;” it is a beautifully messy mix of light and dark, yin and yang, joy and sorrow, comfort and pain. As the dragon spreads his wings readying himself to spew self-doubt, fear, and shame to erode the tiny six year old warrior wrapped around me, sidled right along side are his gifts of intense sensitivity, deep and expansive thinking, a verbal capacity to rival someone in their double digits, and infinite kindness ready to meet it.
My job as his mother is not to slay the dragon for him–it is his battle; likewise, it is not to erase the cruelty of the dragon–the dragon is part of him. My job as his mother is to hold the both-ness of it all for his young mind; it is to breathe with him through it and share my calm with him, share my strengths, my love, and help him learn to balance the intensity of it all. My biggest job is to be a mirror for him and shine back his exceptional strengths–to highlight them so that he may learn to depend on those strengths and himself in the future. Both are true for him.
One of the hardest parts of mothering the rare and extraordinary is learning that one can not do it all, one can not “take it away,” “fix it,” one can not schedule enough therapies in the day to take the hard parts of life away, and that one cannot be everything that one’s child needs because one’s child’s needs are so vast–so expansive–and specialized that one must rely on others to help give one’s child what they need to thrive. Mothering the rare and extraordinary is also about remembering in all of this that one’s child and one’s self as a mother is perfectly and wonderfully who they are meant to be–scars and all. It is the “mixed mode of life”–it is the “both/and.”
My love is fierce and it is powerful. My love is a hurricane of gale force wind-reckoning and a delicate breeze caressing the cheek of a child; it is both terrifying and wonderful. I am both. My mothering is both. It is all in the balance.
Part of mothering is also learning that one’s children mirror back one’s self as they learn and grow. I am mothering them well when I claim myself in my entirety–when I make my beasts beautiful, when I stand tall in the both-ness, when I claim space, when I shine a light on the parts of me that live in the shadows and proudly proclaim them as mine in my wholeness. That is more powerful than any additional therapy I could cram into our already bursting schedule.
We are all a simultaneous mix of vulnerabilities and strengths. For the rare and extraordinary the volume is raised until deafening. Everyone deserves to have their vulnerabilities met with love and their strengths mirrored back to them. Claim your space. Love your dragon. The greatest power comes from loving that which seems most unlovable.
My knuckles were white. The body becomes accustomed to the constant flood of hormones; it’s like a pistol–cocked and ready. Bucolic serenity stretched out before me, my family surrounded me, an audiobook droned on to match the thrum of the tires, and yet the body was locked and loaded for the fight or flight response summoned so frequently over the past nine years.
Hypervigilance is the technical term. Logically, I knew this and the methods to combat it, but there is no logic even in a metaphorical gun fight. I hummed air out hard through my lips and shook out my hands to combat the effects. This was why we were taking this adventure north. We hadn’t even made a half hour in the car and already I was ready to tag out, beat down by the demons of our extraordinary life. This doesn’t even take into account the monumental demon slaying that occurred to get us to actual gear engagement and rubber meets road.
I drove; I always drove because it provided some false sense of control. When one is a pistol, locked and loaded, ready to blow, and everything in one’s world seems like a life endangering threat (and often is), even a false sense of control can soothe. If I could not beat hypervigilance on my terms I would beat it on its terms. Check it beckoned, so I did. Instinctively I looked up to the mirror just above the rear view to check on them–really, mainly on her.
I regretted my choice near instantaneously. My regret was almost as quick and, likely, imperceptible as the tiny eye movements that I caught in my stollen mirror glance. The eye movements that betrayed and revealed the specter of her disease following us, ever following us; the same ones that shattered my heart into a million pieces as they stole the sustained exchange of a loving glance; the ones so subtle her world renown neurologist struggled to catch them. And, dang it, I just caught them in my seconds long backward mirror glance.
Hypervigilance, the ability to perceive the nearly imperceptible, is a superpower and a curse. Logic is hyper vigilance’s kryptonite; “check the facts” my head screamed–a phrase I have learned to both love and loath. Really the kids were fine, content, excited even. The eye movements? In isolation nothing more than a phantom and if not in isolation still not a problem and totally something we could handle without any issue. I tuned back in to the thrum of the tires, it reminded me of my humming breath, I blew out hard, and I hoped this trip would remind me of myself without the nine years of pistol like reflexes.
“Mommy! This is the very first trip we are taking with no doctor’s appointments!”
I jumped slightly as his voice jolted my hair-trigger nerves. “Yeah buddy, that’s right; it is. Isn’t it so exciting?”
Specter be damned. The disease tightly interwoven into her DNA would last her lifetime; her childhood would not. His childhood is equally fleeting. The eye movements and the email to the team I was drafting in my mind about those tiny flickers could wait. It was summer and the road stretched before us. In the words of Ellie from the movie, Up, “Adventure is out there.”
Hypervigilance did not quiet easily. It tugged at my gut like the tension in elastic band that firmly rooted us in place and stretched no farther than a couple hours from home or her main hospital in a major metropolitan area state away for the past 9 years. Moments of respite and fun have always been planned around clinic trips and trips to events for the national charity for her rare disease. Simple trips to Valentine’s Day parties or friend’s baptisms interrupted by the shrieking wail of sirens flooded my memory. It threatened to snap me back and cause me to turn the car around.
“Look!” his voice erupted surprisingly deep for a fleeting moment for a six year old, as it could be at times, “Is that the mountain??”
The baritone in his voice, however childish and fleeting, always tugged at my heartstrings. It betrayed his childhood and previewed a future he was hurtling toward at quantum speed.
His arm remained jutted through the middle of the car. “No bud, that’s just a small one. They are pretty though, huh?”
She giggled in response. “Moose on the loose!”
She’s always loved the car. She’s always loved and admired him more.
New memories awaited. Four days, no doctors, no therapies, barely even a plan (though a well researched canvas of all the appropriate activities in the area), and an entire suitcase full of medication; because, as determined as I am to find our freedom this summer, I also understand it comes with certain requisites. And, I’m ok with that.
Lush green mountains climbed around us and dove into deep valleys carved by rushing water; we drove and subtly, almost imperceptibly, the tension on the over taunt elastic holding us in place snapped, gave way, and we were free. My shoulders eased as we entertained them with a car ride mix of eye-spy and scavenger hunt. We stopped and watched the most delicious of grins erupt on their faces as we allowed them to choose candy for the car ride. There would be no worries about over permissive parenting on this trip.
They both work so hard–literally untold hours of required therapies a week; and, this is their childhood. The work of childhood is play; it is the stuff of magic and fairytale. I couldn’t inject the two tiny letters back into her genetic code that would make it right, nor would I choose to given the choice (for those wondering: I would not do so because: 1) that is not my choice to make; 2) that could change her and I would not change her for the world. Though, I would do anything in this world to ameliorate the health issues caused by said genetic deletion.) I couldn’t wave a wand and make his struggles disappear. I could, however, create magic and breathing room right along side. And, we could make memories and rest.
That is exactly what we did as we broke free from our tethers of therapies and doctors, appointments and schedules, hypervigilance and fear; we made memories and rested. They drank in the pure magic of childhood, we basked in their unbridled exuberance, and I was reminded of all the innumerable reasons why I love my husband so dearly.
My knuckles flushed pink in the hot sun, my grip a lot more loose on the return trip; still, I drove. After all, four days is but a short time, and not enough to unlearn the last 9 years of engrained habits.
“Mommy!” his tired but jubilant voice interrupted the audiobook, “that was awesome, can we do it again?”
“Yeah buddy, it was. We’ll do it again.”
We certainly will do it again.
Sorrow is to joy
the most faithful companion.
Without meaning is lost.
It was as if my life began the moment she gasped her first breath and it was not; it was the moment my life began anew—my life as a mother. This new life was supposed to be my smooth paved roadway fresh and free from debris—the one I merged back onto after the bumpy detours and construction of the past. But, fate and the universe have plans of their own. Instead, as our family drew our first breaths of air together our caravan careened off-road and entered an equally bumpy, detour filled journey with no maps, no GPS, and no intention of ever returning to the well-traveled, smooth-paved roadway the typical travelers sojourn.
My tumultuous past is visibly mapped out in faint white juts that jaunt across the olive skin of my arms and traverse into deep sinewy canyons; they are detours that innocent little fingers have always known and lovingly traced as they soothed themselves to sleep. Disconnected from and ashamed of such a burdensome history and its physical manifestations, I hoped to leave it all behind when those innocent beings entered my world.
The canyons healed long before we drew those breaths together and the map of my past rarely crossed the junket of my mind until the hot rays of the summer sun shed the layers of concealing sleeve above and revealed the delineations below, and deepened the hue of the surrounding skin and divulged my Mediterranean descent.
Recently the topography was more present; my map was mentioned and questioned by those not as kind and innocent as my tribe. I felt thrown asunder. How many noticed and what did they think about it? Did they think it undermined my ability to navigate the rocky roads of our current journey? Because, I certainly started to fear that myself.
I began to have a deep desire to erase the pox-marked skin of my arms, to eradicate the troublesome nature of my past, and pretend that my life began somewhere on my more recent track; but, I could do that no more than I could miraculously heal my daughter’s rare disease, right our off-road travels, and soften our bumpy trail. Confidence eroded from under me like soil washed from a mud packed path under the stress of a traversing vehicle.
In the growing shadows of the late evening my son ran his fingers across the deep crevasse vertically demarcated in my inner elbow and my mind traced back into the shadows of my past. He lovingly soothed himself as he always had on “Mommy’s tickling spot,” and gently stroked as he let the bumps and bruises gained during the travels of his day melt away in my loving embrace. I held the juxtaposition of past and present. How very similar and very different the constant crisis, arduous and pain-filled days. In that moment, as our breathing slowed and synced I also held the resilience, the great love, and the courage.
I realized all the light to match the dark—the yin to the yang—that helped me survive the hard course of my past—all that I learned—prepared me for riding through the chaos of the present. I breathed with him bolstered by a new confidence. It mattered not the thoughts of others but the knowledge of my soul.
The factors of my resilience pulled me from the precipice and aided me along my way in the past, and, because, I exercised them, out of necessity, I know them intimately and impart them intuitively to my children. I emanate them as our breathing syncs and they trace the pathways of my love; they take from it all the deep devotion, boundless resilience, passion, advocacy, respect, and kindness they need along the way.
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Living in Atlanta, loving travel and watching my son kick tuberous sclerosis complex's butt.