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.
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.
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.
The 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).
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.
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.
“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.