On Fighting for One’s Life

hospital

There are no words for watching your child fight for her life.  Instead, there are beeps and humming and the mechanical sounds of that which is not human but used to sustain the very human who is most precious to you in this world.

The human body is both terrifying and remarkable.  The fragility of life lay juxtaposed with its resilience. In both manner it is breathtaking.  It is a blessing and a curse to bear witness to the raw power.

It was Wednesday.  Winter pressed heavy on our household.  The spectre of illness swirled ’round.  News flashed with reports of norovirus, flu, and measles–all background noise.  Stacks of papers filled my office–IEPs for my children and other children who needed help, insurance forms, financial planning, medical documents, and the veritable detritus of parenting a child with a rare disease.  I was hunkered in for a day of paperwork.

It did not surprise me when I received a call from the nurse who reported my daughter was looking tired and complaining of a headache and stomache.  I picked her up from school and, as expected, she spiked a fever.  She was chatty and pleasant; she had an appetite; she even annoyed the heck out of me.  I prepared for the typical childhood virus with a little added flair due to her underlying medical conditions.  I certainly was not prepared for what was to come.

Three days later she was in the PICU fighting for her life.

There was nothing I could’ve done differently to prevent it. (That didn’t stop me from blaming myself)  Nothing can prepare one for the sudden silence.  It is deafening.  She was quiet and my mind was screaming loud.  What if I had brought her in to the ER earlier?  But, I had brought her to the pediatrician and he said she was ok.  What if I had held one medication?  But, that wouldn’t have mattered.  What if?  What if?  What if I could’ve done something different to protect her?  What if I caused her Tuberous Sclerosis Complex (TSC)?  Perhaps some inherent flaw in me, my character, my body, my soul caused her TSC, the tiny mutation on her 16th chromosome, which caused benign tumors to grow throughout her vital organs and wreaked havoc on her bodily systems.

Yes, yes it had to have been me.

In all the silence of her sickly slumber the deduction was that the fault and control lay with me; because, the truth was too terrifying.  The truth was like the erratic beeps and buzzers erupting from the machines crowded around to monitor the goings on inside my baby–that there was no predicting or control.  There was only vigilance.

Her body was and is remarkable and terrifying; and, I had and never will have any control over that.  I could and can only love her and be vigilant.

When her silence turned into screams I held the sacred space that is a mother’s love.  I couldn’t fulfill the motherly task of “making it all better” for her and I won’t ever be able, but I could and can hold the loving space for her resilience to bloom.  I stood firm and reminded her who she was as her body tried to steal that from her. I held the ghosts of every PICU and hospital stay past at bay for her (and me) to make space for whatever was to come.  I hummed softly in her ear the tune I have sung to her since I rocked her in the NICU as a preemie and she settled.  And her body began to heal.

We have been fortunate to celebrate her resilience and full recovery!  Yet the shadow of life’s fragility haunts.  The memory of the fight follows like a faint monitor beeping drumbeat; a ghostly shadow that lay just behind the veil of the exuberance of life; or deja vu that steals one’s breath midsentence.  Life is both wonderful and terrifying if only for one word–love.

There are no words for watching your child fight for her life.  There is only raw emotion; primal fear; all-consuming love; and breathtaking awe.

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On Never Enough

The sounds of “The Greatest Showman” reverberated off the windows of the car and her tiny voice sang along. It was one of her new skills and, by far, my favorite–she is a beautiful singer to boot. I took solace in the melody and her voice as we continued on our way to Boston and her speciality appointments.

The juxtaposition of her blossoming development and the fact that we were traveling to urgently scheduled appointments for difficult issues related to her complex medical diagnosis did not elude me. Our life together is this constant dance of uncertainty and fear riding along side simplicity and gratitude.

One of her favorite songs began and she sweetly sang along “never enough, never enough…” My mind wandered and weaved forward to the appointments of the day and the Herculean task ahead and back to the heartbreaking texts I received in the morning from a fellow mother parenting a child affected by the same rare genetic disorder as my daughter. I tuned back in to her singing.

All the stars we steal from the night sky
Will never be enough, never be enough
Towers of gold are still too little
These hands could hold the world but it’ll
Never be enough, never be enough
For me, never, never”

As I listened, I landed firmly in that space between fear and gratitude. The space is the vacuous home of “never enough.” It is the stark reality of my life raising a child with a rare genetic disorder and extraordinary need. All the moments we stole that we were never meant to have, all the money it took, all the change we made in this world to make it a better, more accepting place for her will never be enough for my sweet child.

It will never be enough to delve deep into her genome and repair the small deletion that sentenced her to a lifetime of complex and immense struggle. A mother’s number one job is to fix all that ails one’s child and I cannot. I will never be enough. We are further stuck within a medical system that is woefully unequipped to handle her needs now and in the future.

Nevertheless, we drive on–this time to another appointment for a Hail Mary treatment. There will be many more. The future will surely hold more therapies, new medications, treatments, clinical trials, and we will weigh the pros and cons of all. We will never stop because she is more than enough.

The song shuffled and she began to belt out a new tune. I was jolted out of my free fall. She really is the sweetest, hardest working, most glorious miracle; she is more than enough. She is love and my love for her is indescribable. Perhaps that is enough.

Yes, perhaps love is enough. It is what I will fill the space between fear and gratitude. I will fill “never enough” with love.

On Drowning

Drowning is silent; there is no grand cinematic splash, flail, and scream.  True drowning is insidious and deadly. The once confident looking swimmer is suddenly gone with no yell for help and no sign of distress.

I am a fiery, powerhouse mother of two children with disabilities and I feel like I am drowning.  My drowning is as silent and insidious as the real thing. My drowning is slow and it looks well groomed and smells of perfume accompanied by bubble bath; it gets to school on time; volunteers for the PTA; then, arrives at home to face the mountain of responsibility and sinks below the surface into the dark depths.

Do not let my functionality fool you; I feel like I am drowning.

I look calm and cool above the surface while my legs frantically kick below to keep me afloat.  My legs are tired and cramped.  They have been kicking for years–since the day I sat cherry faced (from steroid shots) and smiling at my baby shower pretending to be carrying a healthy infant.  No one, save for a select few, knew the baby swimming around in my belly had a body riddled with tumors and would be born with the rare genetic disorder, Tuberous Sclerosis Complex (TSC).  I was drowning in grief, in fear, in appointments for myself and my baby; and, I was excited to meet my growing baby, surrounded by friends and family celebrating her.  A piece of me slipped below the watery depth that day.

My drowning is piecemeal.  It has happened bit by bit over the years.  I have lost pieces of myself to the crushing responsibility and lack of resources.

Today I tread tirelessly, a child in each arm, to keep us all above the surface.  I feel the tug of riptide–the school calls, the emergencies, the medical crises, the new diagnoses, the day to day battles, the behaviors, the therapies, the endless appointments. It threatens to pull us all under in totality and I tread on because I refuse to let this life claim my family. I am buoyed by my love for them–by our love for each other.

I am tired and I need help; and, I will continue to tread on. You may not know all that is happening below the surface. I look like I can do it all but one cannot tread water indefinitely without support. And this world is just not built to support families like mine–the multitude of need is far reaching. The cost thus far has been high. The truth is below the surface there are pieces of me slipping away bit by bit while I wait for someone, something to help.

Nevertheless there is a bothness to this world that is mysterious. I look the model of strength, calm, cool, collected togetherness while I feel like I am drowning. I am losing pieces of myself bit by bit while I gain new perspectives on this wide and wonderful world I would never be privy to without my beautifully complex children. The love, pride, and joy I hold for my family gives me great strength and requires strength from every fiber of my being. I may feel like I am drowning and I am kept afloat by the hope I hold for our future–no matter how small it may be at any given moment.

On Grieving the Living

Girl Running in Woods
In October I Remember She is the Girl Who Lived

I gazed up at the blue skies mottled by billowing white; bright reds and golds jutted upward cutting through the azure plain.  My soul was weary.  There was a distinct chill in the air and a cold breeze blew that rustled the leaves casting them down to their final resting place.  My thoughts danced around the archetypal shadow of loss and death.  

The weather fit nicely like a warm, woolen, worn boot; it was like the Octobers of my childhood.  I took solace in the familiarity.  It was not like the Octobers of late with their warm breezes and their confusing temperatures—the harbingers of climate change.  I watched the wind whip a pile of dried leaves into a small cyclone.  It mimicked my thoughts and the churning within.

We received the diagnosis of Tuberous Sclerosis Complex (TSC) for our sweet baby girl in October.  Every year when the leaves die so does another piece of my heart.  Like every October, it is a bit different and there is great beauty, loss and grief. 

Til the day I die, I will carry the extraordinary burden of grief that was bestowed upon me in October.

***

I always wanted a girl.  I was ecstatic when I found out I was carrying a girl.  I never dreamed of doing her hair or of princess dresses, but rather of bestowing upon her the secrets and great gifts that have been accumulated over generations of womanhood. It was my greatest desire to share with her the power of being female.  Like every mother, I rubbed my belly and infused the baby growing in my womb with my hopes and dreams.  Some basic—to be provided for; health; and survival—and some more grandiose—to be a force with which to be reckoned; to know her power and own it; to love and appreciate art, music, literature, and culture; to be kind, ambitious, fair, loving, philanthropic, an activist, and, yes, a feminist.

All these hopes and dreams came crashing down like a poorly constructed house of cards when met with the diagnosis of TSC and the hope was replaced with a single hope: let her live. 

Survival. 

Please, to all the powers that be, let my baby live.

And, so began my journey into grief.

I skipped right over denial and anger—there was no denying the images of her tiny body floating in my womb and her heart riddled with tumors.  I was too shocked to be be angry.  I moved right on to bargaining.  

Please, I will do anything; I will give anything; I will be anything; just let my baby live.

And, she did.

She came screaming into this world a couple months later, pink and lovely as could be, and still there was no denying that she had TSC.  Yet, the only thing predictable about TSC is the unpredictability.  Our sweet girl could be very mildly affected—lead a completely normal life with monitoring and the help of medication.  My hopes and dreams blew back in like a gust of autumnal wind and filled my soul.  

There was a bottomless pit of grief, that I could not identify and yet felt so intimately, and I was at the bottom.  But now, there was a ladder of hope on which I began to climb out of that pit.  Nevertheless, grief never leaves.  It marks you like a scar on your soul.  While there was hope, my grief merely shifted.

Please, I will do anything; I will give anything; I will be anything; just let my baby remain seizure free, let her avoid heart complications, let her avoid a life-threatening tumor in the middle of her brain, let her avoid autism, let her live.

My pleadings became ever more complex like chantings to the gods.  Under all the bargaining was intense and immeasurable sadness—nameless grief.  I did not comprehend that I could be grieving because I had this beautiful, tiny, amazing human in my arms who smelled ever so sweet and made tiny squeaks and coos.  There is no grief when your child lives.

Then came heart failure—heart functioning “incompatible with life.”  She was four months old.  Let her live became an ever present chant in my head.  I heard it constantly.  Soon to follow were seizures then catastrophic epilepsy in the form of infantile spasms then confirmation of a SEGA.  

Let her live.  Let her live.  Let her live.  

I was too busy caring for her to feel—to notice the grief I was dragging along with me like a monstrous ball and chain.  Until the quiet hours of the night when the mantra would cease and the only sound would be her tiny sleep sounds and the enormity of it all would settle on my chest like the weight of the world.  

This can’t be real.  This can’t be her life.  This cant be our life:  Denial.

Why?  I hate this!  I can’t do this anymore!!  I did everything right.  I listened to the doctors.  I took all the vitamins.  I hate the world.  F*ck this. F*ck TSC:  Anger.

Please, just let her live.  Please, please, please: Bargaining.

She grew and we welcomed her brother and another October came and went and an immense sadness haunted me like a ghost.  The specter of the loss of the life I thought she would have, the mother I thought I would be, the family I thought we would be, the life I thought we would lead haunted me.  Fear crept in: Depression.

And, she lived.  She has lived.  She continues to live and thrive with Tuberous Sclerosis Complex:  Acceptance.

It was not until I settled into the sadness and the loss that I was able to identify the reality of my grief—the both-ness of it.  The death of a dream and the birth of what is and who she is exist hand in hand.  There is a deep and ever evolving grief in that.  My dreams have shifted as has my grief.  

October to October I have seen many of the dreams I had for my girl fade from verdant hopeful green to blazing bargaining red then wither and fall to earth in grief filled loss; and, I have learned that they will be replaced with new dreams that bud and bloom in the full glory and newness of green hope.  My grief is part of me—as natural and integral as the tree’s life cycle.

As the Octobers pass my mantra has changed.  Now it is: 

I fear her loss because of my love.  Let my love surround her.  Let our love sustain.

On Childhood Summers

Kids in summer
The work of childhood in summer

Bright sun penetrated the room waking me before both alarm and children—only summer can do that.  It was the first day both kids had a break in full summer programming; I looked forward with both excitement and trepidation to the day ahead.  My heart longed for the lazy haze filled days of the summer of my memory—no schedule, no obligation.  My mind battled the desire for the logic defying Insta-perfect pictorial squares of trips to the beach, water balloon fights, sticky-sweet popsicle hands against bathing suited bellies, and freckled-faced grins enjoying watermelon in the sun.  

None of that is our reality.  Our days are filled with extended school year services, Orton-Gillingham tutoring, various therapies, all dotted with highly structured summer activities when possible.  Rare-disease, autism, dyslexia, and the like robbed us of the summer of my childhood memories.  Skinned knees and bike rides, sun burns and hot sand, cool-air museums and humid fresh-air concerts, firework explosions of color and sound lived where danger and safety, relaxation and boredom were balanced and learned without schedule and without consequence; because that is the stuff of childhood summers—the work of it all.  

I grieved in the morning light for what we both lost.  When parenting the rare and extraordinary one grieves in triplicate—for what the child endures, for the loss of the child one imagined long before the child of reality was knitted into existence and delivered into one’s arms, and for one’s self.  The breeze of summer air blew in the window already heavy with dew and pressed on my chest laden with the threesome of grief.  Nothing brings it out for me more than summer.  

I heard the stirrings of children in the rooms across the hall.  I wanted so badly for this day to encompass the freedom for them to explore and us to adventure—for the bright day to take us where it may and for us to simply breathe.  But, for our family there is danger in that.  The lack of routine and schedule feels like a free fall to our sweet and anxious, rare beauty; like a delicate flower she only thrives in the most planfully balanced of soils.  Our twice-exceptional guy can hang with a lot more ambiguity; he is also the most loving of empaths with his own fragile nature that can be thrown asunder by his sister’s mercurial moods.  

When hope and dread play like the unnatural pair of fox and hound chasing round my mind and belly, the trained and cultivated nature of dread, like hound, snuffs out the wild nature of hope, like fox, offering it up for slaughter.  Dread was tempered by the morning snuggles, though even that is technically part of our daily routine.  I drank in the soft skin and pudgy fingers that would soon be transitioning to the more slender bodies and lanky fingers of middle childhood, tiny morning giggles, and the pleasantness that only a new beginning can bring.  

Dread crept back in when snuggles segued into medication time—a reminder of our reality and that I really had no plan.  To have no plan as a mother to special needs children, to a child with autism, is like a traveler crossing the desert with no water.  The fox of hope playfully reappeared and I clung to that; plans would wait.  Medicine first, then plans—the first, then language of therapy so necessary in our home etched into the architecture of my mind. 

That morning I was the Queen in Alice in Wonderland with such range that “Why, sometimes I’ve believed as many as six impossible things before breakfast” and ran the full gamut of parenting emotions.  Cereal clanked in bowls and pills were swallowed.  Still no plans.  The day would not be completely free of therapies.  Like God we only take one day off out of seven.  Applied behavioral analysis (ABA) therapy was the only one on the docket for the evening to support dinner routine; still the full day lay ahead like the long stretch of the earth’s orbit during sunny summer.  

I questioned whether I was robbing them of something with all this—only the Sabbath off, the first/then scheduled routine, the therapies—because grief and dread swept up a deep longing and today I wanted a day from my childhood.  Coffee, with its earthen smooth bitterness had a way of grounding me, and thankfully, as I drank in its warmth I found my balance. I heard them swashbuckling in the playroom.  First/then would wait.

This is their childhood.  It is not Insta-perfect, nor is it the 80s pool-dunked, bike riding adventures of my youth.  Their programming provides them what they need to grow and growing is done year round.  For us that means extended school years dotted with short jaunts to the pool, ice cream cones in the parking lot at occupational therapy, barbecues and backyards with therapists in tow.  It is the work of it all.  And, that would be our day.

That evening as I loaded hotdogs on the plates of the neighborhood kids around our picnic table who we slowly collected over the day our ABA therapist sat nearby.  Chalk and Orbeez littered the driveway, an iPad and a timer sat nearby, dirt streaked their faces, and they went to bed tired.  That is the stuff of their childhood summer.  My grief subsided and I retired that night thinking how very lucky I am that so many more than “six impossible things” occur every day; how very lucky I am to be their mother.  And, I mused, I had a delicious summer day. 

On Past and Present

Mapping the way
Mapping the way

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. 

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.