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 Infantile Spasms

In honor of Infantile Spasms week below is the text of my 2015 presentation on Infantile Spasms to the New England Tuberous Sclerosis Alliance. Infantile Spasms are a rare catastrophic epilepsy that begins in early infancy. It is marked by subtle movements that mimic the Moro or startle reflex in series but could also be as simple as a head nod. The following is our journey.

Imagine an infant—their round features, soft skin, new baby smell, their warmth against your body as you cradle them.  Let those feelings sink in—the joy, comfort, love, and peacefulness of the moment.

Now imagine someone rips the infant from your arms and leaves them in the middle of a busy intersection while you are forced to do the unimaginable, stand helplessly by and watch from the safety of the sidewalk.  As uncomfortable as it may be, let the feelings of that imagery rise up—the pure abject terror, the visceral feeling of complete and utter helplessness, the horrifying dread and anticipation, the steadfast hope for safety even in the most perilous situation, the relief as the minutes pass and the child remains safe and sound, the utter anxiety, grief, and sadness of it all.  

Now try to hold both images in your mind—the warm comfort of snuggling a sweet infant and the absolute horror of them in danger.  Try to hold both those feeling experiences simultaneously in your consciousness.  To me this is what it was like having a baby diagnosed with Tuberous Sclerosis Complex (TSC) and learning of the risk of infantile spasm in TSC.  In fact, this is how I explained to a friend what I was feeling when Kaleigh first started experiencing infantile spasms at 5 months old.  I felt as though my precious baby had been ripped from my arms and was placed in oncoming traffic.  Every day I was waiting for the car of clusters to strike her, knowing the results could be catastrophic, yet never knowing exactly what the collateral damage would be in the long run.

Today, I want to focus on the emotional component of having a child diagnosed with both TSC and infantile spasm.  We’ll hear a lot about education, what to look for, treatments, and science around these diagnoses.  But, personally, even armed with all the information and as prepared as I was logically for the event of possible infantile spasms, I was not prepared emotionally.  I struggled and was stymied by the overwhelming experience.  Our experience with infantile spasms was anything but straight forward.  My hope in speaking is to acknowledge what preparation and medical providers cannot—the  very private struggle of parenting an infant having infantile spasms.

Our daughter K was diagnosed with TSC at 29 weeks gestation when an ultrasound showed multiple rhabdomyomas in her heart and increased ventricular volume in the brain.  The devastation of the diagnosis weighed heavy but even then I had a sense of relief that I was able to prepare.  Some of you here know me, so it won’t surprise any of you when I say I am a planner.  I am a card carrying type A personality, academic, research loving, statistical nerd, who likes everything to be orderly and planned.

Did I mention I’m a control freak?  Becoming a parent is especially challenging for us high-strung types, under even the most idyllic of circumstances. I handled the diagnosis in my typical fashion, I wept, I reflected, and then I prepared.  I read all I could from the Alliance.  I looked into doctors, clinics, switched birth plans and OB/GYNs to a practice with a better NICU.  I watched videos of infantile spasms.  

And then my world changed on Dec 1, 2009.  K stopped moving and I was sent for an emergency c-section.  She was born pink and screaming and was whisked away to the NICU where she was evaluated and a few days later officially given the diagnosis of TSC.  We met with a neurologist from our local children’s hospital and TSC clinic before leaving the NICU.  His advice was to enjoy her and call if I had any concerns—he’d see her in 3 months. 

The simultaneous joy and grief made it so very difficult to enjoy the first months of her life.  At four months old, we took K to a regularly scheduled cardiology appointment where we found she was in heart failure.  She was immediately admitted to the PICU for treatment.

There is no preparing for such an event.  There are no words to describe the emotion of the experience.  And it was during this time that we noticed the first whispers of impending spasms.  K was recovering from the heart failure nicely.  Her function was improving and we were moved to a regular floor.

My husband was holding her in his lap when she made a slight movement like she was doing an abdominal crunch.  I suspected spasms right away and quickly got the hospitalist covering the floor to come in.  The APRN entered while K was still making the motion.  She assured us it was nothing, likely just reflux, she knew what infantile spasms looked like and these were not them, there was no throwing out of the arms, no distress between the episodes, etc.  

This was the first intersection of knowledgeable preparation and emotion for me.  It was a spectacular internal crash.  I knew spasms could look like this.  I knew more exaggerated motion could follow.  I knew timeliness was of the utmost importance.  And yet I so badly longed for none of it to be true.  I wanted to believe the APRN.  After all she was a medical professional, she had to know more than me, she had to know something I didn’t.  I wanted to ease the anxiety, to allay the terror of helplessness, and feel safe, potent, and in control.  This was the underlying experience for me through our entire spasms journey.

K is fast approaching 6.  It has been nearly four years since we have seen a spasm and the echo of these emotions remain.  The call to go down the path of what if instead of what is and what was beckons me. I cannot say for certain if those were her first spasms.  I can only make my best educated guess.  I think they were and I carry a lot of guilt for allowing my emotion to cloud my logic. Nevertheless, I went with what the APRN was saying and I can’t change that decision. I mentioned the episode to her neurologist.  And we waited to see where things went.

When one night she was playing on her infant gym mat and began to repeatedly throw one arm in the air and crunch her abdomen on that side, I again sprang into action recording a video and immediately calling the on call neurologist.  We were again met with professional concern yet assurance.  There was nothing that could be done until Monday but increase her the mediation she was on for her simple partial seizures.   We brought her in for an EEG that Monday and to sign paperwork for Sabril if needed.  The EEG was good.  It only showed left occipital, parietal spike discharges.  The same ones she had for a couple months and the ones she continues to have to this day.  We were told it was unlikely she was having spasms as there was no hypsarrhythmia but they would start Sabril anyway.

Now came the time that the physicians scared the ever loving sanity out of us regarding Sabril and side effects.  The chance of peripheral “blindness” was heavily emphasized.  Another collision of logic and emotion.  

I felt like Seligman’s Dog… True to my nerdiness this is a reference to a famous psychological experiment in which dogs are electrically shocked repeatedly.  At first the dogs have no way to escape.  Eventually, the experiment is changed so that the dogs have a simple way to escape the shock—they can jump to a shock free cage.  But, the dogs don’t.   They lay there and endure the shocks over and over.  It’s what’s called learned helplessness.  It happens to us humans too.  We were in a terrible situation.  We were helpless.  But there was an out and it was Sabril.  It seemed equally terrifying.  So there was an aspect of freezing under the circumstance.  Allowing the emotion to overwhelm.  And falling even deeper into the terror of helplessness.  

We signed the papers and received Sabril soon after, but we were repeatedly told they did not think these were infantile spasm.  I was overwhelmed by it all.  Worried about our baby’s future.  Would she ever sit up, crawl, walk, talk?  Would she be blinded?  I was worried about her present.  I gave her the first dose of Sabril and held her with hope as she fell asleep.  But she really fell asleep.  Into too deep of a sleep.  I couldn’t rouse her after quite some time.  She was breathing and pink but she was not responding to stimuli.  I called the neurologist.  Placed an ice pack on her bare skin as he recommended and when she did not wake took her immediately to the emergency room.  We were told she had Sabril toxicity and to stop the medication.

Over the next few months, K continued to have questionable episodes of clustered movements.  They were subtle at times, and dramatic at others.  My gut said they were spasms, but our neurologist said they weren’t.  There was no hypsarrhythmia.  In fact, there was no electrographic correlate with any episode on the EEG.  We were told they would not try Sabril for her again.  They told us to have her evaluated by GI for reflux, have cardiology see if they were some strange form of arrhythmia or syncope.  So we did.  Even when my gut said we were going down the wrong path, I was overwhelmed by the disparate experience of my knowledge and the emotion of hope.  I could not control any of this.  I was in a whole new territory.  No amount of will power, volition, preparation, or knowledge could change the feeling of hopelessness and helplessness.    

At 9 months old, K began having tonic clonic seizures up to 5 times a day.  At that point, I knew we desperately needed to do anything to save our daughter.  She was admitted to the local children’s hospital and we demanded that if they would not prescribe Sabril that she be put on the ketogenic diet.  We also asked for appointments to be made for us at a hospital with a larger TSC clinic—one that could do a surgical evaluation.  The ketogenic diet controlled her seizures nicely… at first.  We transferred care to the larger clinic, celebrated her first birthday, and made it to the New Year.  

The day after her yearly MRI, Kaleigh had a long cluster of serial head nods.  Again, I knew it was seizure.  Specifically, my gut knew it was likely infantile spasms.  This time I vowed not to get mired in the emotion.  To stick with my logic and get K on Sabril.  We were at one of the top children’s hospitals in the world and one of the best TS clinics as well, this had to be more straight forward.  Another vEEG and another time we were told that what we saw was not infantile spasm—it wasn’t even seizure as there was no electrographic correlate.  Again, my heart was filled with hope.  These were reputable, world renowned doctors, they had to know what they were talking about.  I wanted so badly for what they were saying to be true.  

I wanted it so badly that I clung to the hope and almost every day it was shattered by another cluster of serial head drops.  My heart was broken every single day.  I worried endlessly.  K was nearly two, not walking, delayed in fine motor skills, talking but stalled.  I knew these were seizure.  I feared they were spasm.  I did everything I could to advocate to get these episodes and her other seizures under control. I called the doctor’s office every day.  I had my sanity questioned by her doctors, my parenting skills debated, I was told over and over again that I was wrong for not trusting that these were not seizure.  It was a very dark time.  I stood helplessly by on the sidewalk as car load after car load of spasms slammed into our sweet girl.  I was eaten alive by doubt, guilt, and the utter pain of it all.  But I moved forward, and continued to advocate for diet changes, medication changes, more EEG monitoring—anything I thought might save K from being ravaged by what I was now fairly convinced were spasms.

About four months after we saw the first cluster, 11 days after her second birthday, and with her 8 week old baby brother in tow for the week long vEEG, we finally received confirmation that the head nods were in fact seizure.  They were spasms.  They showed electrographic slowing during the cluster.  The neurologist told us they were juvenile spasms because she was over 18 months old and that these were less deleterious to her development.

I was never so devastated to be right in my entire life, nor do I think I ever will be in the future.

The doctors told us to increase her Keppra and that Sabril was not needed for these spasms.  I was flabbergasted, but knew I needed to raise the issue with her neurologist instead of the neuro covering the floor.  I will never forget what her neurologist said when I pleaded with her to start K on Sabril.  She said, “She uses her eyes.  I will not prescribe a medication that could blind her.”  Seligman’s dog no longer, I got up and took the leap.  I fought tooth and nail, called the patient advocate, and got K placed on Sabril by the end of the week.  After our experience, we transferred K care to a doctor, hospital, and clinic that was a better fit for us and were seen a few weeks after initiating Sabril.  K’s new neuro only needed to look at videos of K’s episodes to say they were seizure.  And with a few med tweaks she had Kaleigh’s spasms and other seizures under control within a few weeks.

We’ve continued to face struggles with TS that have seemed insurmountable; that have rendered us helpless, hopeless, and terrified; but, for now (EVERYONE PLEASE KNOCK ON WOOD), spasms are a struggle of the past and I am able to use that experience to navigate our current difficulties.  My greatest obstacle is to leave that spasm struggle in the past–not to be lured by the emotion back to a timeline I cannot change.  Every time I am confronted with K’s delays, the siren song of doubt and guilt woo me.  What if she was put on Sabril earlier?  What if I did this instead of that?

This fruitless exercise takes me away from the beautiful, smart, sassy, vibrant child I have loving me and driving me absolutely nuts, in the best way possible, every single day.  It is what leaves me in heaving sobs in the doctor’s office thinking I am personally responsible for her latest discouraging neuropsych results instead of listening to my girl trying everything she knows to try to get me to laugh.  

I am certain I am my harshest critic.  Nevertheless, it is true that I made many mistakes in our spasms journey.  I lost myself in emotion.  But, that was not one of the mistakes I made.  It was emotion that pushed me on and it was my gut that told me to keep seeking treatment in the face of objective medical data.  Another one of the big lessons I learned was that preparation and knowledge are not everything.  Knowledge alone did not get K the proper diagnosis and on the best treatment regime.  In fact, knowledge in absence of the bigger picture failed her first physicians despite their best efforts.  It was the marriage of clinical knowledge, parental advocacy, and passion that helped K.

Lastly, I may have characterized hope throughout this journey in a negative way.  It was my clinging to hope that often overshadowed my gut feeling that something was very wrong—that K was having infantile spasms.  But, hope is often all we have.  It is what holds us together when we are the dog chained to the shocking cage, when we are the imaginary parent watching our imaginary child in the path of oncoming traffic, when we are the parent of a child with Tuberous Sclerosis Complex and infantile spasms doing everything we can to help get the spasms under control.  Hope fosters resilience.  Spasms are devastating, uncontrolled spasms decidedly more so, and our children are resilient.  So, have hope.  

On Refusing to Live Small

world in hand“I refuse to let her world be small.  I refuse to let her world be small.  I refuse to let her world be small.

I chanted rhythmically in my head as I heaved her eight-year-old body and the 50 pound oversized medical stroller through the rough hiking terrain; she alternately squeed in delight and grabbed on for dear life as I struggled over rocks, roots, and various forest detritus. There was a chill in the air as the sun’s beams struggled to stretch through the canopy above and reach us below in the shadowy underbrush.  We were going to catch up with the group in spite of the clear lack of handicap accessibility, my anxiety around taking a child who just had a status seizure two weeks ago into a remote wooded area, and the school’s hesitance to take her on the field trip.  Because, the only other answer would be to stay home and live scared of what could happen.

I refuse to live in fear; I refuse to teach her to live in fear.  I refuse to let fear make her world small.

The current state of the world calls us to live in fear.  We live in a seemingly terrifying time.  Week after week the walls of terror close in–shootings happen in movie theatersschoolsgrocery storesofficesplaces of worshipvehicles are weaponized against the pedestrian;  a murder happens in high school and classes remain in session for the day; and it doesn’t stop at death because even funerals are protested.  This past week alone two hate crimes occurred that killed two people at a Kroger in Kentucky and eleven at a synagogue in the Squirrel Hill section of Pittsburg.

There is fear that surrounds us and fear that arises with in us; it whispers to us and demands we hunker down and fortify against potential attack.  Fear calls us to protect ourselves from others and those who we view as potential threats.

Terror forces us to make our world small.  To live small; to think small; to be small.

I refuse to let my world be small.  I refuse to live small; I refuse to be small; I refuse to think small.

I refuse to let the external climate of the times frighten me into submission. There is too much at stake.  My children are at stake; our children are at stake.

Our daughter was born with a terrorist within.  A rare genetic disorder, tuberous sclerosis complex (TSC).  TSC causes benign tumors to grow in her vital organs, epilepsy, autism, and an endless list of other medical complications can occur across her lifetime.  It breeds fear and uncertainty; it steals any sense of safety and security for our daughter and for us, as her parents, raising her.  The goal of every terrorist is to make his/her victim’s world small and frightening.  TSC is different than a terrorist in there is no why and it has no goals, nevertheless there was a time it made our world very small and terrifying.

TSC made our world small until I looked into the eyes of our daughter and saw past the terrorist, faced the primal fear of losing her, and reconnected to the love that drives the all encompassing horror of potential loss.  The underbelly of the beast remains and the only difference is that I approach it with love and steadfast resolve:  I refuse to teach her to live in fear; I refuse to live in fear; I refuse to make our world small.

The lesson is universal, whether the terrorist is inside one’s self or in the world at large.  There is fear and uncertainty across the spectrum–from terminal illness, to mental illness, to chronic illness; to hate groups, divisive political groups, or the threat of lone criminals.  There will always be things in life in which we have an utter and complete lack of control.

The solution is acceptance of the very fact that we do not have control of everything.  It is to stare in the face of our fears and look past the terror to the wealth of pure humanity and love that remains in this world.  It is to embrace life and scream to the world:

I refuse to live in fear.  I refuse to live small; I refuse to think small; I refuse to be small.  I refuse to let my world be small.

I embrace life with love.

On 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 Origin Stories

superheroThe screen came to life in graphic bursts of vibrant color and the sounds of symphonic movie scores swept through our home.  The meteor crashed into Earth in a spectacular explosion spewing Vibranium everywhere; my son’s widened as he drank in a seven year old’s dream—the origin of a Superhero.

My wrist faintly vibrated, startled me and caused my heart rate to instantly rise; the Apple Watch strapped around my wrist was like some sort of Pavlovian torture device that induced momentary panic whenever it alerted and my daughter wasn’t right with me.  I was stolen away from the screen and into my own world—like Batman called by the Bat Symbol.  When the watch buzzed my body would instantly flood with chemicals readying me for the potential emergent phone call until my mind could process and reason with the automated physiologic response and back down. It was only a text message; I forced a breath out and willed my heart to slow and read.

“Last update they were placing #9 of 16,” accompanied by a heartbreakingly gorgeous photo of my friend’s daughter.

Surgeons were placing the ninth out of sixteen depth electrodes into the brain of my friend, Blair’s, sweet baby girl to invasively monitor her epilepsy (stereoelectroencephalography—sEEG) in hopes of gaining enough data to resect or ablate some of the abnormal tissue and halt the barrage of seizures caused by Tuberous Sclerosis Complex (TSC).  

“11”

I felt the blood rush to my face and suffuse my body with the superhuman strength that is required to respond when emergency strikes—damn watch!  I brought my brain back online.  I was like the Hulk willing the transformation to stay at bay.  

I channeled my energy into my response of support to Blair, read our friend Bridgett’s response on the group text, tapped out what words I could muster, and thought of how improbable it was for our lives to have crossed.  Blair lived over 4 hours away, Bridgett another 2 from there, and we had little in common practically; we were all brought together when TSC exploded into our lives like the meteor blazing across my TV screen and became the source of our superpowers, our connection, and our bond.

It was our origin story.

There is a before—there is always a before in an origin story—and an after.  Splitting the before and the after is an event of immense, life altering significance—one that changed the person and became his or her new beginning.  The person emerged from this event fundamentally changed right down to the fiber of their very being; when they emerge they ofter struggle to find their footing and own the power they have gained through the soul changing experience.  

Once one was able to walk through the fires of grief and tumultuous period of change one emerged with new powers that other simply did not possess—superpowers. Like Marvel’s X-Men those with superhuman abilities gravitate toward each other and find others in their own tribe.  Once there they share their own origin stories and it is what bonds them.

Special needs parents are typical people who all have an origin story and now possess some superhuman characteristic.  We are protectors of the true Superheroes and we are powerful in our own right.  To hand one’s child over to a surgeon for brain surgery, 1500 miles away from one’s home, while one’s other two children are back home with family takes superhuman strength.  It takes a tribe of those with superhuman strength to hold one up. Blair’s strength as a mother was superhuman and she had Bridgett and me to hold her up—regardless of how different our origin stories.

The life altering event could be a diagnosis of TSC, cystic fibrosis, autism, a car accident, or something else unnamed, and for those who have just experienced this—welcome.  Forget, “Welcome to Holland”; welcome to the Tribe.  To those who are crawling out of the radioactive pit of their origins you will find us—in doctor offices and therapy waiting rooms, on Facebook groups, and in charitable organizations.  We will whisper the stories of our begins to you and offer you our shared strength.  You will learn from us and, in turn, us from you.  We will become forever bonded.  Our Tribe is one of fierce love, superhuman feats, and a dash of the mundane.  We are the protectors of Superheroes and those who have gained superhuman love and strength from a life-altering event.  

“With great power comes great responsibility.”  There is no greater power than the love of a special needs parent and no greater responsibility than a child.

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.