Category: Joy and Sorrow
Tomorrow is world TSC awareness day. My one ask is you wear something blue for Kaleigh and her friends. Wear blue. And read this. That’s it. (It’s a long read but bear with me…)On Protection
The tree’s roots reach deep
Through winter’s solid frozen soil
Shelter for soul’s spark
On Short Day’s Night
Winter’s night looms long
Like the day’s pregnant shadow
Birthing dream or dread
On Despair
Meditation on Despair:
You are like a cold wind that blows through and rustles the last of the autumn leaves that cling helpless on the branches and herald the arrival of winter. Winter, the season of death and dormancy, is your friend. You seep through the cracks in our foundations like an icy chill. Perhaps like water, soft yet strong and forceful, ready to freeze as the hopelessness of winter sets in and drive those foundational crevices into deep canyons of pathos. And, as the sadness grows you feed on it; you grow ever stronger until your insidious presence can no longer be ignored. Foundations of joy, happiness, love, and hope crumble at your feet until all that is left is the gaping abyss of you–despair and, your favorite of partners, hopelessness. But, perhaps, not all that much unlike the cold winds that harken the winter white, you too shall blow past in turn and the world will bloom around you once again. That’s the thing with seasons–they change; and foundations–they may crumble and fall but they can be rebuilt. You too are important just as winter is to the world. But you are only to be a season for which joy and hope can return once again.
On New Years
In the quiet cold
Bright new beginnings emerge
Gray strength resolute
On Refusing to Live Small
“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 theaters, schools, grocery stores, offices, places of worship; vehicles 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 Anniversaries & Grief
I have no words
They fell from my mouth
Like leaves from the tree
Stars from the sky
Hopes from my dreams
You can’t put them back
They must be grown
Nurtured
Loved
Time must pass
The tree will bloom
Stars will shine
I will speak of hope once more
***
Mid-October steals my words every year since we received the diagnosis of Tuberous Sclerosis Complex for our daughter on October 15, 2009. It took me a bit, but my words are back and I hope to be writing more regularly again. Welcome back to those who I have been neglecting or welcome in general.
On Nighttime
Light crack breaks
Like dawn through the door jam
Spinning rumination halts mid worry
Small voice asks for a glass of water
No one is afraid of the dark;
They are afraid of what it hides.
On Bravery
There 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.
On Community
The chirr of crickets drifted in the window above me and reached through the dark for my ears. The pillow case scratched against my cheek, cheap and rough, and I lay eyes drinking in the darkness and waiting for sleep. My mind wandered through the solitude and I thought of the crickets; crickets who stringed their tune in loneliness–calling out–until their trilling hums united in a wondrous symphony that painted the soundscape of late summer’s night.
My thoughts hummed in solitude like the lonely song of the cricket, and I imagined the thoughts of those lying eyes wide and sleep eluding painting the mind-scape of the night. All people’s reflections so very different–thoughts of longing, of love, of loss, of guilt, happiness, hope, of joy and sorrow–thought in the shadow of lonesomeness.
Only the most precious, complex, and perhaps dangerous rumination are capable of robbing one of sleep; and we, the parents of the rare and extraordinary, are faced with such pondering often. Life for us is inherently isolating and lonely; it is lived at an incredible pace; the trumps and struggles are of such a magnitude that it bleeds into the solitary hours of the night.
Rumination like a cat burglar snuck up on me, the unsuspecting victim, and stole sleep only to leave a pervasive state of underling fear and uncertainty. I was feeling especially lonesome and unsteady as of late. Both a cherished friend and some close family moved many states away, we made big decisions–such as the one to place one of our children in a self contained classroom–a change in school for both kids, and new diagnoses and ever shifting medical concerns for the children weighed heavy and left us more isolated than usual.
Over the years, Tuberous Sclerosis Complex (TSC) and the other exceptionalities of my children have laid waste to my career outside the home, many friendships, our hopes for a bigger home, and more. When the kids were young, it was easier to still enjoy some of the same pleasures as parents of healthy, neurotypical children–playgroups and jaunts to the park–but as the years passed and she has remained frozen in time and development we are no longer able to assimilate in that which is built around the typical family as easily. Our life became more and more extreme–outbursts, prolonged hospital stays, severe financial strain of raising children with exceptional needs; and, the stress increased exponentially. As the stress increased, our ability to attend social events and lead outgoing, independent social lives outside our family became less and less–forget trying to find a babysitter! Our days were spent at therapy appointments and ABA, we missed birthdays and barbecues, let down friends and family over and over again. Some friends fell away, we were blessed to find some new, yet our world seemingly became smaller and smaller, lonelier and lonelier. I became like the solemn cricket singing out to the night sky in search of another of my kind.
It was easy in the dark hours of the night as the warm September breeze blew out the summer and in the fall and the air settled like a heavy sadness to mourn it all in solemnity. There was truth to all of this and truth is never a singularity. For all that TSC and the extraordinary vulnerabilities of my children have taken, for all the isolation, I have also been bestowed many gifts. I was reminded of this as I listened to the symphonic harmony of the crickets; we have been gifted a camaraderie and community (among other things).
Like the very image of waves driven in ink deep into the layers of my skin that connects me to the other parents of children with TSC who bare the same marking, though our stories may be very different, we gain strength from our connection and unity in our rarity. My thoughts shifted from my deep seclusion and the wreckage of the day–another school disaster, another betrayal by a person entrusted to service our child, and the havoc that rolled down the line–to the village of people who swooped in to help. There are times when I am buried so deep in the difficulties of our life that I fail to hear the chorus around me.
In one day we had a caring new friend, who knows very little about our sweet children but has been open and accepting of us, alert us to the school issue, my darling best friend–my person–support us with calls and emails and legal research from her hurricane ravaged neighborhood many states away, and another dear person offer to make the cupcakes that I just won’t be able to make for our son’s birthday on Saturday.
I am not alone. We are not alone; and we are alone. That is the crux of life. We are all simultaneously alone in our plight and surrounded by humanity. We are the solitary cricket chirring a call to his fellow cricket yet surrounded by the deafening cacophony of chirping in the dark summer’s night–alone and together.
I settled in with a new recognition and appreciation for the deep and spreading roots of community we truly have; and, with an understanding that when I feel isolated, misunderstood, and alone in this rare and exceptional life that all I need to do is call on those connections. That I have people willing and able to rise to the occasion. And also, that call need not be literal or external; it can also be an internal grounding in the roots of community and the love that surrounds our family. Because, there are many times when I will still very much be alone in this and that is ok–alone and together.
We are all so much more alike than different. We are all so much more valued and loved than we will ever know. We can all call on that in the darkest hours of the night–when the crickets hum, thoughts race, and sleep eludes. Rest peacefully in the chorus of community.
On Joy and Sorrow 