On Traditions and Taming Dragons

Sauce

The pot bubbled and steamed, red hot like lava; I’m mesmerized and enchanted.  The smell filled my soul and I was suddenly small, tiptoed and peeking over my nose for a glance at the mysterious brew.  I am filled with love and warmth, earth and roots, history and spirit; I am filled with the touch of every loved one who passed along the wisdom of life and recipe.

The volcanic like lava of the deep red sauce bubbled up and spit singeing my arm and I returned to my adult form–all other senses came back online.  She yelled at me shrill and panicked, “Mommy!!  It smells disgusting in here!!”

The hairs on every inch of my being stood up.  Hypervigilence kicked over into active mode and my internal monlogue activated:  Is this an aura?  Sh**! is this an aura?  Last time she had a status seizure it started by her saying something smelled disgusting.  Look at the time.  You will have to time it.  11:43 AM.  It’s 11:43 AM.  Where’s your phone?  Calm down, Rebecca, you have all her meds.  You know how to handle this.  Determine if this is a real smell and move on.

“What smells disgusting baby girl?”

“That!  Are you cooking?  Can you move it?  Throw it out!!”

Phew!!  It’s a real smell.  But, damn it, autism!  FU TSC and epilepsy.  My culture, my heritge, my freaking pot of sauce on the stove is disturbing to my child.  I’m a mutt–a product of Ellis Island America; I have very little culture and heritage to speak of and you pervert even that.  You take everything.  You, the dragon, who lie in wait and snarl your teeth at the most unsuspecting moment.

Tuberous Sclerosis Complex (TSC), TSC-Associated Neuropsychiatric Disorder (TAND) and associated autism, and epilepsy have pervaded every moment of our lives.  TAND is a complex beast–a dragon who has wrapped herself around our baby girl and woven herself into the fabric of our family.  Dragons are both beautiful and fearsome.  Autism is a main feature of TAND and perhaps one of the most tragically glorious and horrific of the dragons.

Our girl is like Daenerys from Game of Thrones with her dragons. Her dragons are both part of her and threatening to consume her.  The dragon is rigid, she has sensory issues, sleep issues, impaired communication and social interaction, impulsivity, food aversions, and more.  The dragon steals from us because it does not live like us; it does not derive joy from the same things.  There is still great beauty and joy in this dragon, but make no mistake, it is a thief of our family’s joy and peace nonetheless.  It is not easy to learn to live with a dragon;  and, it is certainly not easy to learn to cook for one.

As I looked between the stove and my daughter, contemplating my next actions, for a horrifying moment, my memory flashed to an article I read on the shooter (who shall remain nameless) at Sandy Hook who was also autistic.  In it was described some of his difficulties including: “He was upset [by]…the smell of her cooking, which he mostly did not eat because of its texture.”  I thought of his mother, who he slaughtered, and his demons and the unspeakable horror that he unleashed on this planet.  Whether autism was a factor in that or not I do not know, but it is certain that when his mother was living she was controlled by it.

I came back to my senses from the vastness of worst case senario.  If I were to wax poetic about the enormity of the dragon, for dragons by nature are large creatures, this would no longer be a blog post, but rather a dissertation or novel of some sort.  The hole is deep and bottomless and today is not the day to fall down it.  Instead, let’s get back to the sauce.

My heart was in my throat but it was also on that stove.  How to tame the dragon?  I was not throwing out my grandmother’s sauce and much of that had nothing to do with the sauce–it was about so much more.  It was about taming the dragon and about me.  I rarely cooked like that anymore.  It takes time, which I don’t have, and humans who want to consume it, which I also lack, (our brand of dragon doesn’t dig Italian–she only digs hot dogs, chicken nuggets and chips…it’s a short list), and it takes a dedication to myself, which I am severely lacking.  The thing about dragons is they take up a lot of room.  There isn’t much space for anyone else to exist in their presence.  I spend much of my time taming the dragons and soothing those around her and within her.  That isn’t going to change, so I returned to the taming and soothing.

“Baby girl, Mama can’t throw everyone else’s dinner out.  It’s just a pot of sauce cooking.  I know it smells bad to you.  I’m sorry about that.  How can we make this work for both of us?  How about we close the playroom door and you hang out in there until the smell gets a little bit better for you?”

She happily took her Christmas hoard into the playroom and holed herself up in there.  I returned to the bubbling pot of lava, stirred it, and reduced the heat; and, my heart broke a little bit more.  I never think it possible, but somehow it always is–for my heart to break more than it already has in life.

It was the reality of what the dragons have taken.  That of what I will never be able to pass on to her.  The love, the tradition, the heritage, the history in that pot.  I thought of my grandmother, a huge influence in my life, and how my kids have met her but once.  Now 95 years-old and her mind fading, they are unlikely to see her again.  I thought how there are so many loved ones that I met but a few times and how cooking this recipe brings them back, and how she won’t even have that.  How different her life is from mine; how different her life will be from mine.  How different my life is from what it was–hijacked by dragons.

As I stirred the pot I thought, how different my life is from my Grandmother’s.  How remarkable, really.  I remembered her words from our calls when the kids were little.

“Becky, how do you do it?!  Two little ones–so close in age.  How do you have so much energy to take care of them?”

“Grandma, how did you do it?!? I don’t know how you did it!  All your kids were twins!  You always had 2 littles ones!!  3 sets.  You had 2 babies with 2 toddlers running around!  How did you do it?”

Her answer was always: I don’t know.  Then she would weave some beautiful story about the past.  How things were different–lines of stroller parking outside the grocery store where you could leave your babies while you shopped, friends to help with your kids, etc.

And my answer to her always:  I don’t know.  I still don’t.  I don’t know how I find the strength everyday.  I don’t know how I found the strength 5 minutes ago to face down a smoking dragon and spitting, aromatic pot of sauce.  I don’t know how I’ve raised a child with a rare genetic disorder to the fine age of 9 and a brother with multiple differences by her side.  Because, the beauty and the mystery of life is no one knows the how along the way and when we get there the how matters little anymore.

We get there bit by bit.  Ingredient by ingredient–like making the perfect sauce.  And, the recipe changes over time.  I am certain my grandmother, a widowed mother of four children (two sets of twins) felt as though she would never make it to the next day until she did; and, she did not know how she would survive more twins when she re-married and had another set until she did.

Some pots of sauce are delicious, and some pots of sauce you end up tossing; they are all merely moments.  Moments we must thread one to the next.  And that, that I can teach to my beautiful little dragon child.

In the meantime, I need to remember to invest in more of the moments that replenish that which the dragons have taken away–like making a steaming hot pot of sauce.

 

 

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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.

On Simple Joys

cars on highway

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.

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.

On Meeting Fears with Love

Learning to love the dragon
Learning to love the dragon

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.