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 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 Bravery

September skyThere was something about the late September sky and the clear day–the sea of blue interrupted only by clouds of fluffy white juxtaposed against newly wheat-colored grasses.  It was like an expansive ocean washed across the sandy beaches of land.  Warm breezes blew rustling the drying grasses and harkened change.  Every year I welcomed September with excitement and trepidation; and as the sun tickled my nose and I drank in the firmament I knew this year would be no different.

The time expired on my brief contemplation of the beauty of autumnal awakening; the door creaked as I wrenched it open, hands over-full (as usual), little voices came back into focus flinging the word vomit in my direction.

Buckled in and on our way my September baby resumed his word barrage:  “My birthday Mommy!  My birthday is soon!  I want a Percy Jackson party and we are going to make Camp Half-Blood necklaces and we can have sword fights and I can dress in armor and I want a projector for my birthday that projects things onto my walls and ceiling and I’m in the Poseidon cabin and we need to pick cabins like we did last year when we sorted my friends into Hogwarts houses at my Harry Potter birthday this is going to be so cool!  Mommy!  Mommy!!  And I want you to make mini Poseidon figures to go onto my cupcakes or maybe we can have a cupcake cake or just a cake.  Make sure you get my bro* his allergy cupcake. Mommy! Mommy? Are you listening?!”

*his best friend

My head swam through the expanses of crystal azure above cut through only by the dark asphalt scar I drove down to our next therapy appointments.

Shoot. I was caught out.  He was talking and it was all muffled Charlie Brown teacher like.

“Yes, bud.  Sounds good.  Except maybe something you said about the cupcakes sounded a little complicated.  We may need to be flexible about that.”

He resumed the machine gun word fire and my head continued to swim as we pulled into the parking lot to split up. My husband waited to take one kid to one therapy as I took the other to another.  We unloaded, arms overly full again, save for a few fingers for sister to grab as we traversed the parking lot.  The smell of apples was in the air.

“Mommy, you heard me right?! We can do all that for my birthday?” he said.

“Probably, buddy.  We’ll talk about it when we get home.”

We exchanged quick hugs and kisses as he climbed into the car seat in my husband’s car.  The husband and I said a quick hello and an even quicker goodbye; only enough time spent together for a graze of each other’s hands to meet–not even a hug or kiss.  I retook sister’s hand in mine and breathed deep; smells of apple and dry grass filled my lungs.  And, I was transported back.

God, I love and hate September.

As I breathed in, the smells carried me back to the carnival, belly round with baby, and toddler in tow.  She was dressed in bright pink pants and a chartreuse shirt that hid the Holter monitor (heart activity monitor) attached to her chest–cheeks chubby and slightly chapped (from teething and messy food)–as she rode in her brown stroller.  It was the last weekend we spent as a family of three.  I remember it viscerally; the sheer terror mixed with unbridled excitement and joy–wild and bright like the September sky.

We sat her on a bright red tractor to take a picture and to let her play with the steering wheel and buttons.  Suddenly she was slumped over on one side and rigid on the other, arm slightly shot up, and I rushed to press “record event” on the box attached to my bionic baby while making sure to hold her so she didn’t fall off the tractor.  I whispered a silent prayer to the cosmos, because by then Tuberous Sclerosis Complex (TSC) had stolen any belief in an omnipotent and benevolent being I had left, that it really was “just” her heart and some weird kind of fainting episode.  My gut knew better.  These were seizures. Seizures of the worst variety–infantile spasms.

Panic suffused my being: How was I bringing another life into this chaos?  What if the baby squirming around my now tightly compacted abdomen was also born with this devastating rare genetic disorder?  We had all the testing done and knew that our beautiful girl’s case was a spontaneous mutation; a base pair deletion on her 16th chromosome with a frame shift.  A completely random slip up in her DNA that made it like her cells were dialing the wrong phone number–as though my body rang up a terrorist when it knitted her together in my womb.

A 1 to 3% chance that it would happen again was what we were told by all the experts.  He had been watched closely for signs by multiple peeks inside the womb as he grew.  There were no signs.  But, there was no trust when you unknowingly weaved a terrorist into the cells of your sweet baby girl.  The world became topsy-turvy.  There were landmines under bright red tractors at the local country fair.  That was the world we were bringing him into.

September stole my breath.

The door to the old farm house in which her therapy was held squeaked open and someone slipped by us as she squeed happily almost tripping them on our way through.  I slid down on to the slippery cool leather of the couch and was again transported back.

I gripped the arm of the pleather chair of the hospital waiting room, white knuckled, and looked him dead in the eye: “I can’t do this.  I want to go home.  We’re not doing this today.  He’s staying in there.”

He calmly said, “He has to come out somehow.  And you have to have a c-section so it’s now or soon.  It’ll be ok.”

In the room, I stared out at the clear blue waves capped by clouds of white foam in the September sky, draft blowing through the back of my johnny gown mimicking the breeze rustling the leaves, and every cell of my being vibrated with fear.  I had grown accustomed to living with a terrorist.  In the startling quiet of the prep room, I steeled myself and time stood still; til it was shattered by the sweet sound of his shrill newborn scream.

September breathed new life into me.

She hopped onto my lap despite the expanse of couch that spread horizontally from me and turned back, as she so often does, to put her face so close I could feel the moisture of her exhale.  Her face widened as she smiled, eyes squinted by the pudge of her cheek, and she examined me.

Her smile the same as always; as though frozen in time and transported through Septembers from atop the red tractor to atop my lap on the well-worn leather waiting room couch.  A smile so innocent and carefree you would never know it lived along side a terrorist; that it has survived heart failure, infantile spasms, status epilepticus, years of a ketogenic diet, and more in her short lifetime.  The smile that welcomed a brother to our clan and dubbed him “bud-dy.”

Therapy was over for the night, we were home safely, and the September sky was painted ablaze with the fires of sunset; the air in the house smelled soapy clean of bubble bath and the sound of giggles echoed off the walls.

“Moooooommmy!  It’s gonna be brudder’s burfday soon!” she shouted.

He ran past milky skinned and rosy cheeked–still holding on to the cherubic looks of early childhood–and I was suddenly struck by the magnitude of my love for him.  And, their love for each other.  They ran through the house full of giggles and shouts challenging the dark corners, and the terrorists with in and with out.  I contemplated how that love changed me and how I deal with those terrorists.  It is a love so strong, “you did not know you were capable of feeling, primal and angry and powerful, you would kill ten men and Satan if you had to.”  A love that looked a lot like bravery.

September made me brave.

Sometimes bravery is as simple as a smile.  It is bringing a toddler, your belly round, to a carnival, despite her Holter monitor, your own fear in tow.  It is birthdays and brothers.  It is love.  It is living along side the terrorists because there will always be something to fear.  Bravery is living your life anyway.  It is bath time and rosy cheeks.  It is clear blue skies with fluffy white clouds and American flags blowing in the breeze because we will not let them take away our freedom.

Bravery is a six year old little boy looking into his mother’s eyes and asking, “so you’re way older than me so when you’re gone and sister and me are older, and she can’t drive, am I going to have to drive her everywhere?  Am I going to have to take care of her?”

It is being flabbergasted and saying, “There will always be someone to take care of her and if you want it to be you it can be but that will be your choice, and you will have lots of time to make that decision when you are a lot older, buddy.”

Bravery is living in the ambiguity–the never knowing if you made the right choices.  It is having a second child after a tiny devastating deletion in DNA in your first.  Bravery is quiet resolve.  It is fear and love.  It is primal, powerful, and angry–the will to kill ten men and Satan if you had to–or it is not.

Bravery is September.