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 Persistence

AtlasHave you ever felt on the edge?  A razor’s width away from the world crushing you?  Have you ever thought maybe you should let it?  Have you ever wondered what would happened if you stopped holding it up, like enduring Atlas, and let the sky fall?

Of course you have, because you are like me–blessed and burdened by circumstance; you are a parent of the extraordinary.  The weight is unimaginable and the task so tiring; for who can hold up the world and the sky?

Nevertheless, we persist.

What is the alternative?  For the sky to come crashing down?

It does that anyway; it falls  with every crisis, every diagnosis, every meltdown, every school meeting, every stare, every medication failure.  And, that is why it is our job to hold it up.  It is our job to make sense of it all every time the earth shakes and another crisis rips the heavens from the firmament.  It is our job to piece it back together–azure patch dotted by fluffy white, patent-leather black pin studded with shiny bright diamonds.

We must make sense of it for our blessed and burdened, extraordinary pieces of heart walking around outside our chests.  For, if we didn’t there would be no understanding, no up or down, no hope.  We would be crushed by nature.

Who makes sense of it for us–holding the earth and the sky, picking up the pieces, placing the stars back one by one?  Who makes sense of the nonsensical?  Who helps carry crushing burden when we fear it will flatten us?  When we are weary and we wish it to?

I do.  We do.  We shoulder our burdens together because we are the few who can understand the job–the immense burden and blessing.  We link arms and hunch shoulders to disperse the weight as we speak of the crises, and diagnoses, the meltdowns, and meetings, the stares, and medications.  We stoop low and scoop the scattered stars and shattered blue canvas of sky the next time it comes tumbling down and help to paste it back up again–and again, and again.

Nevertheless, we persist.

 

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 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.