On Trading Places

El Jaleo
Forever trapped oil on canvas

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.

John Singer Sargent, El Jaleo
Photo from my last sojourn

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.

On Love Through the Extraordinary

Loving Through the Extraordinary
Loving Through the Extraordinary

My eyes met the translucent blue waters that surround his pupils over our lunch of fast-casual Mexi-American and dove in deep.  I found calm and strength in their tides for over ten years no matter how stormy the sea of our lives together.  I longed for more moments where I could catch his gaze again and hold it, just the two of us, even if it was surrounded by the shuffle of feet on tacky soda-stick floors and air heavy laden with the smell of fry-o-lator tortilla chips.

The pace of life for us is like the lunch rush at that fast-casual restaurant.  It is chaotic, noisy, and impossibly straining.  Daily operations are assembly-line style and crisis is ever present.  Not exactly the metaphor that comes to mind when one thinks of love, marriage, children, and family.  Nevertheless, he is mine, I am his, they and this life are ours.

We were young(ish) and dumb(ish), foolish and in love.  We shared late nights dreamily staring at the night sky planning the future we were to spend together–our family, our children.  I stared deep into the oceans of his eyes and promised to love him for better or worse, in sickness and in health, for richer or poorer.  Little did we know what the stars held.

Movements flickered on the screen in the dark of the ultrasound room like stars in the sky when we first heard her diagnosis.  He tried to hold my hand as they said she had tumors in her heart and brain, would likely suffer from epilepsy and autism, and rattled off the litany of other potentially devastating effects of her rare disease.  Rebuffed, he gave me space, because he knew my stubborn independence required it.  I still don’t think he knows how much I needed the gesture; how much I need it every time and how much, no matter how miffed I seem, I appreciate and love him during every crisis.

We negotiated the sale of a house with a baby in the pediatric intensive care unit (PICU) in heart failure, we had the courage to have another after our first child was born with a devastating deletion in her DNA, we navigated therapies, medications, diagnoses, and medical insurance and still do day by day.  We gained gray hairs and the start of wrinkles.  Most importantly, we’ve done it together.

When the stormy blue of his eyes whips violent swirled by the latest crisis the earthen-clay of mine grounds him; and when the clay-colored earth of mine rumbles and shakes threatening to break his calming waters soothe me.  In a life with no astrolabe to chart a path through such horribly fated stars we lead and follow each other where the journey takes us.  Even if that means catching up for a mere 20 minutes over extra-cheesy culturally appropriated cuisine.

 

On Extraordinary Siblings

On Extraordinary Siblings
Finding Hope Through Love

The medicine spilled down my fingers sticky-sweet and thick somehow reminding me of tar.  It found its way onto every surface with long reaching tendrils and glued itself there.  Dammit! I thought, I don’t want to be doing this, not again, not for the seemingly infinite time in her short life, because the sickly sweet antibiotic with its tar like tendrils stuck to me and weighed me down with complete and utter hopelessness.

My mind jogged back to picking up the medication and the scene we caused in the pharmacy drive thru.  A simple sibling fight had escalated to screaming match until he yelled out in frustration, “I wish she was normal!  I wish I had a normal sister!”

I was stunned into silence as the motion of the pharmacy tech’s hand slowed to a crawl in my mind’s eye on its way to hand me the necessary supply of medications for this round of battle.  There is only so long one can stay shell shocked and survive, so I forced myself into forward momentum, turned around and addressed him with a, “We will talk when we get home,” signed the pad, and went on our way.

At home I got to the business of doling meds, as the hot anger churned acidly in my stomach and fear of not being enough to handle this all shook my hands and spilled the drip down my fingers.  How does one address a sibling with the tar of hopelessness stuck to every fiber of one’s being with its accompanying stench of helplessness following one’s every move?

After dosing sister, I sidled up to him on the couch, “Bud, don’t I wish, every minute of every day things were different too?  Your sister is normal.  She is perfectly meant to be who she is; just as you are you.  We all struggle with something and sometimes that is a big thing and sometimes that is a small thing; for her that struggle is a very, very big thing.  I get mad too and wish she didn’t struggle like she does and it’s ok to wish that but it isn’t ok to say that to her.  If you have those thoughts or feelings you say them to Daddy or me.”

I swallowed hard waiting for this impossible-to-understand topic to land in his six-year-old psyche. Hopelessness is pervasive and deep. It will stick to one’s insides.  He has it stuck to him too.  He is small and in a world impossibly unfair and even more improbable to understand.  We have to make some room for him to share his burden even when we don’t like how it sounds.  

The same burden that can make this mom feel weighed down and consumed with a panic that feels like it will never dislodge.  My heart ached for him and broke with the weight of helplessness and hopelessness.  I knew I had to work harder to illuminate the genuine love and hope for his sister and our family that I hold for him and all to see.  

Because, I know right up beside that hopelessness and helplessness is a reservoir of strength, hope, and resilience.  I find it in her smile, his hug, the way they both burst out laughing in the pharmacy drive-thru as I rolled down their window and told the pharmacist that I had two fighting beasts on display if she cared to view; it is in the juxtaposition.  

Yes, I wish every day that I could remove her struggle, but her striving in the face of adversity is what gives me hope.  I would not change either one of them.  Not one bit.  And that is where he can find hope.  In his mother’s love.  That will carry him through the struggles of having a sister with a life-altering rare genetic disorder.   

I moved closer to the feelings of love, agency, and hope as I scuffed the hair on his head.  He smiled ever so slightly through the sadness.  

We’ll make it through. 

On Balance

Balancing Act
Balancing Act
Photo by FRANKYDEE on Pexels.com

Moonlight leaked from the window sill spilling onto the floor making long shadows of the figurines that collected dust on long-overlooked shelves; my breath caught for a deluded second as I mistook the shadows for one of them out of bed.  I collapsed into the chair heavy like the house that creaked in the quiet of the night, groaning under the weight of standing tall for over 65 years.  I had work to do.  

The blue light of the screen illuminated my face and I angrily gnashed keys on my laptop, the ones with the smooth synthetic touch of silicone.  I tried to concentrate on their foreign feel, the artificial sense the overlay gave to the keys; I knew I must somehow construct a similarly synthetic facade to the ferocity of pressure built behind the messages I had to send to the school, subjects as finely innervated as the tips of my fingers; raw, delicate, and real.

Fingers grazed the keys and my mind drifted to the odd position we have been placed by chance; a life that is so excruciatingly public, a strange mix of spectacle and need.  I must spill the most difficult and private to an audience of strangers out of necessity; perhaps out of desperation.  I sat with the house heavy in slumber, constructing a carefully veiled message laced with reference to legal regulation and painfully private detail of my children’s lives; I was struck by the immense need.   

Halted in my clacking I became lost in musing; disability has made my family’s lives like an old time circus act.  The one the audience flocked to watch trapped waffling between amazed baited breath, profound desire to intervene on behalf of the performers, and the wish to shut their eyes tight against the anxiety of it all.  And at the center of it all was me, the show’s ring leader, directing and coordinating, protecting.  

This ring leader, intrinsically steamy and tumultuous, with feelings that bubble dangerously hot and close to the surface, and hands that tremble when angry; conversely, perfectionistic, infinitely caring, intellectual, painfully sensitive, and intensely private.  I was not meant to bridle my Jungian shadow so publicly and ride it for the benefit of an audience to inspire them to do the right thing and provide my children with what they need;  I was not meant to do that as much as I was meant to bask in the glow of a Mac in the dark hours of the night, rather than dive deep into the alternate universe of a novel. 

I’ve worked hard to suffuse the steadfastness this life required of me; but, it always chaffed like the rubbing of an ill fitting shoe.  Unnatural, like the blue glow of the screen that gave way to the silvery natural light leaking in from the window; I never did quite managed the appropriate performer’s facade.  I was harried and pressured, fierce and determined, raw and primal, and, perhaps, a little frightening of a spectacle.  

Typing the innumerable emails of the day to address the latest crises was stifling.  And yet as unnatural as it felt I knew it was exactly what I was meant to do; and I knew as painful and public as it was (and it was going to be forever more) I was made to lead this circus.  I have learned to accept I am just the right mix of ferocity and docility (perhaps I am still working on taming the ferocity).  

I paused my typing and as my fingers were silenced the subtle sounds of children’s sleep sighs made it to my ears; I decided to hit send.  The remainder of crises could wait another day.  Left over lullabies called me up the stairs and like the sounds from the pied piper I followed them into my bed surrounded by my family.  Exactly where I was meant to be.

On Freedom

On Freedom
Searching for Freedom

The sun shone in hot, grazing my knuckles with its rays as the air rushed in from the open window smelling sweet and sticky, a mix of mature chlorophyl and highway fumes, and for a second I almost felt peace.  I caught a glimpse of another driver, window down, hair blowing in the wind, and I wondered where she was going or what she was doing and I imagined her freedom.  I lost myself in a moment of reverie, as I often find myself doing these days, imaging the days when I was free from seeing the reality of life and knowing those days of freedom are forever gone.  The moment lasted but the space of a couple inhale and exhales until I heard her tiny giggle in the backseat and I was snapped back into reality; until I felt the massive weight of responsibility suck in around me. Responsibility like the crushing pressure of water that can rush in to any tiny hole or deformity found in a vessel at sea and displace all the air and eventually crush massive structures sinking them, banishing them to the ocean’s depths; responsibility so massive it is like an ocean.  

She yells, “Fresh air!” and laughs again that magnetic giggle that forces all those around to involuntarily smile. 

I smile with a twinge of pain as I think how oxymoronic that something so pure and joyous could suck all the air from my lungs and snap me out of the closest moment to freedom I have felt in the longest time.  She is almost 9 but still has the giggle of a toddler, like many of her other features.  

We are behind the clock, again, rushing to pick up brother; coming from an appointment at the hospital, to get him, and to go to his therapy.  This is the third therapy of the week; it’s like soup du jour, every day has it’s own flavor of therapy, mostly for her but also some for him.  The car sways with the turns, a little too much, it needs new suspension but we can’t afford it, therapy is expensive, doctors are expensive, this life is expensive.  

“Baby, Mama’s had enough fresh air I’m gonna roll the windows up now.”  

I feel my breath being sucked out the window like the air being displaced by water in someone who drowns, and I just need the window closed; but there is no end to this drowning, no rescue and no death, just the ever pressing weight of responsibility and no way to swim through it.       

I hopped out of the car and the sun hit my back warming me, I hear the noises of summer in the background and wax nostalgic for the time I worked summer camp; I love children more than anything else in this world, I love working with children, talking with them, teaching them, everything about them.  How could I not know it could be like this?  I opened the car door to help my nearly 9 year old out of her car seat, a full 5-pt harness car seat.  I have religiously buckled her in and out of a car seat for 9 years and will continue to do so for the foreseeable future; it’s easy to forget about the monotony of care when they are stages in the developmental march of childhood until the march forward is halted and becomes a never ending merry-go-round.

I prayed as we walked that nothing behaviorally “unexpected” happened at camp today, to who I prayed I’m not sure, because I stopped believing there could be any benevolent spirit in this world the day I resuscitated my daughter in our living room while her younger brother lay sleeping upstairs.  Whatever juju there was left I must’ve squeezed out of the universe with that prayer, because we managed a successful day at camp and emerged from the shadowy cool basement of the school back out into the blinding sunlight of the parking lot and back we climbed into the car, ball and chain of responsibility following like the shadow of memory that I can’t seem to escape every time we enter the car, the one that causes my heart to quicken its pace and my mind to replay every time she slipped into a seizure in that car seat I have buckled her into, the one that is supposed to keep her safe, but does nothing to protect her from her own body.  Her body, the one I tragically knitted together for her, irreparably broken and in need of support for the rest of her life, both beautiful and tragic, and eternally entrusted to me to defend and protect.

They asked for music, just more din added to their quibbling, the buzz of the tires, and the constant internal dialogue; scheduling, dinner, scheduling, medications, scheduling, to-do, birthdays, what-ifs, politics, am I doing enough, the general on goings of the mind, ever churning like the constant whirring of the gears of a clock inside my head.  It’s such a beautiful day, what happened to my freedom?  I wonder where that woman was going, wind blowing in her hair as she drove down the interstate.  I think this is nothing like I imagined it would be and I know it is never as anyone imagines it would be, but all this with its constant therapies and medications and doctors and emergencies is really so very far from anything anyone could imagine.  I love children, they are all I ever wanted, it can’t all be crushing responsibility like the water that rushed in and crushed the Titanic like an empty Coke can under foot.  

Friends have children, they drive with the windows down, and breathe deep breaths that fill their lungs with sweet air that smells of lilacs and cut grass.  They still experience the delicious freedom of life.  They take swim lessons and piano, they complain about dance class and the cost of costumes, they worry about reading and enrichment, and what type of organic sunscreen is best to protect their intact children’s bodies; they live on the sandy beach and I live in the crushing depths with the rusty wreckage of those who have drown long ago.  I live where my lungs cannot expand.  My lungs cannot expand because I live in the world of therapies that are a have to instead of dance classes that are a want to; in a world where I look at the medications sprawled out on my kitchen table readied to be dispersed into their neat weekly planner and come to the mind-numbing realization that the cost of one month of these medications combined is literally double the average U.S. yearly income (yes, yearly!); and a world where everyday is spent moving crisis to crisis.  I live in a world where I am meant to pretend I can breathe because it is the polite thing to do in the company of those who find breathing so natural.  Occasionally I find others like me amongst the wreckage, drowning at the crushing depths, we share knowing looks, and try to help each other the best we can but the problem when you are drowning is there is no way to help another who has sunk to the bottom of the ocean.  

I’ve lived this life so long I’ve almost forgotten what it’s like to have lungs that move in and out easily like the well oiled machines lungs are meant to be.  I forgot until I saw a young woman driving down the highway on a beautiful summer day, hair blowing in the wind, and longed for the freedom of healthy children giggling in the seats behind me and a destination unplanned rather than the therapy du jour.