The tree’s roots reach deep
Through winter’s solid frozen soil
Shelter for soul’s spark
The tree’s roots reach deep
Through winter’s solid frozen soil
Shelter for soul’s spark
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.
Sun struggles through gray
Light wrestles prevading gloom
Day breaks nevertheless
Drowning is silent; there is no grand cinematic splash, flail, and scream. True drowning is insidious and deadly. The once confident looking swimmer is suddenly gone with no yell for help and no sign of distress.
I am a fiery, powerhouse mother of two children with disabilities and I feel like I am drowning. My drowning is as silent and insidious as the real thing. My drowning is slow and it looks well groomed and smells of perfume accompanied by bubble bath; it gets to school on time; volunteers for the PTA; then, arrives at home to face the mountain of responsibility and sinks below the surface into the dark depths.
Do not let my functionality fool you; I feel like I am drowning.
I look calm and cool above the surface while my legs frantically kick below to keep me afloat. My legs are tired and cramped. They have been kicking for years–since the day I sat cherry faced (from steroid shots) and smiling at my baby shower pretending to be carrying a healthy infant. No one, save for a select few, knew the baby swimming around in my belly had a body riddled with tumors and would be born with the rare genetic disorder, Tuberous Sclerosis Complex (TSC). I was drowning in grief, in fear, in appointments for myself and my baby; and, I was excited to meet my growing baby, surrounded by friends and family celebrating her. A piece of me slipped below the watery depth that day.
My drowning is piecemeal. It has happened bit by bit over the years. I have lost pieces of myself to the crushing responsibility and lack of resources.
Today I tread tirelessly, a child in each arm, to keep us all above the surface. I feel the tug of riptide–the school calls, the emergencies, the medical crises, the new diagnoses, the day to day battles, the behaviors, the therapies, the endless appointments. It threatens to pull us all under in totality and I tread on because I refuse to let this life claim my family. I am buoyed by my love for them–by our love for each other.
I am tired and I need help; and, I will continue to tread on. You may not know all that is happening below the surface. I look like I can do it all but one cannot tread water indefinitely without support. And this world is just not built to support families like mine–the multitude of need is far reaching. The cost thus far has been high. The truth is below the surface there are pieces of me slipping away bit by bit while I wait for someone, something to help.
Nevertheless there is a bothness to this world that is mysterious. I look the model of strength, calm, cool, collected togetherness while I feel like I am drowning. I am losing pieces of myself bit by bit while I gain new perspectives on this wide and wonderful world I would never be privy to without my beautifully complex children. The love, pride, and joy I hold for my family gives me great strength and requires strength from every fiber of my being. I may feel like I am drowning and I am kept afloat by the hope I hold for our future–no matter how small it may be at any given moment.
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.
The pot bubbled and steamed, red hot like lava; I’m mesmerized and enchanted. The smell filled my soul and I was suddenly small, tiptoed and peeking over my nose for a glance at the mysterious brew. I am filled with love and warmth, earth and roots, history and spirit; I am filled with the touch of every loved one who passed along the wisdom of life and recipe.
The volcanic like lava of the deep red sauce bubbled up and spit singeing my arm and I returned to my adult form–all other senses came back online. She yelled at me shrill and panicked, “Mommy!! It smells disgusting in here!!”
The hairs on every inch of my being stood up. Hypervigilence kicked over into active mode and my internal monlogue activated: Is this an aura? Sh**! is this an aura? Last time she had a status seizure it started by her saying something smelled disgusting. Look at the time. You will have to time it. 11:43 AM. It’s 11:43 AM. Where’s your phone? Calm down, Rebecca, you have all her meds. You know how to handle this. Determine if this is a real smell and move on.
“What smells disgusting baby girl?”
“That! Are you cooking? Can you move it? Throw it out!!”
Phew!! It’s a real smell. But, damn it, autism! FU TSC and epilepsy. My culture, my heritge, my freaking pot of sauce on the stove is disturbing to my child. I’m a mutt–a product of Ellis Island America; I have very little culture and heritage to speak of and you pervert even that. You take everything. You, the dragon, who lie in wait and snarl your teeth at the most unsuspecting moment.
Tuberous Sclerosis Complex (TSC), TSC-Associated Neuropsychiatric Disorder (TAND) and associated autism, and epilepsy have pervaded every moment of our lives. TAND is a complex beast–a dragon who has wrapped herself around our baby girl and woven herself into the fabric of our family. Dragons are both beautiful and fearsome. Autism is a main feature of TAND and perhaps one of the most tragically glorious and horrific of the dragons.
Our girl is like Daenerys from Game of Thrones with her dragons. Her dragons are both part of her and threatening to consume her. The dragon is rigid, she has sensory issues, sleep issues, impaired communication and social interaction, impulsivity, food aversions, and more. The dragon steals from us because it does not live like us; it does not derive joy from the same things. There is still great beauty and joy in this dragon, but make no mistake, it is a thief of our family’s joy and peace nonetheless. It is not easy to learn to live with a dragon; and, it is certainly not easy to learn to cook for one.
As I looked between the stove and my daughter, contemplating my next actions, for a horrifying moment, my memory flashed to an article I read on the shooter (who shall remain nameless) at Sandy Hook who was also autistic. In it was described some of his difficulties including: “He was upset [by]…the smell of her cooking, which he mostly did not eat because of its texture.” I thought of his mother, who he slaughtered, and his demons and the unspeakable horror that he unleashed on this planet. Whether autism was a factor in that or not I do not know, but it is certain that when his mother was living she was controlled by it.
I came back to my senses from the vastness of worst case senario. If I were to wax poetic about the enormity of the dragon, for dragons by nature are large creatures, this would no longer be a blog post, but rather a dissertation or novel of some sort. The hole is deep and bottomless and today is not the day to fall down it. Instead, let’s get back to the sauce.
My heart was in my throat but it was also on that stove. How to tame the dragon? I was not throwing out my grandmother’s sauce and much of that had nothing to do with the sauce–it was about so much more. It was about taming the dragon and about me. I rarely cooked like that anymore. It takes time, which I don’t have, and humans who want to consume it, which I also lack, (our brand of dragon doesn’t dig Italian–she only digs hot dogs, chicken nuggets and chips…it’s a short list), and it takes a dedication to myself, which I am severely lacking. The thing about dragons is they take up a lot of room. There isn’t much space for anyone else to exist in their presence. I spend much of my time taming the dragons and soothing those around her and within her. That isn’t going to change, so I returned to the taming and soothing.
“Baby girl, Mama can’t throw everyone else’s dinner out. It’s just a pot of sauce cooking. I know it smells bad to you. I’m sorry about that. How can we make this work for both of us? How about we close the playroom door and you hang out in there until the smell gets a little bit better for you?”
She happily took her Christmas hoard into the playroom and holed herself up in there. I returned to the bubbling pot of lava, stirred it, and reduced the heat; and, my heart broke a little bit more. I never think it possible, but somehow it always is–for my heart to break more than it already has in life.
It was the reality of what the dragons have taken. That of what I will never be able to pass on to her. The love, the tradition, the heritage, the history in that pot. I thought of my grandmother, a huge influence in my life, and how my kids have met her but once. Now 95 years-old and her mind fading, they are unlikely to see her again. I thought how there are so many loved ones that I met but a few times and how cooking this recipe brings them back, and how she won’t even have that. How different her life is from mine; how different her life will be from mine. How different my life is from what it was–hijacked by dragons.
As I stirred the pot I thought, how different my life is from my Grandmother’s. How remarkable, really. I remembered her words from our calls when the kids were little.
“Becky, how do you do it?! Two little ones–so close in age. How do you have so much energy to take care of them?”
“Grandma, how did you do it?!? I don’t know how you did it! All your kids were twins! You always had 2 littles ones!! 3 sets. You had 2 babies with 2 toddlers running around! How did you do it?”
Her answer was always: I don’t know. Then she would weave some beautiful story about the past. How things were different–lines of stroller parking outside the grocery store where you could leave your babies while you shopped, friends to help with your kids, etc.
And my answer to her always: I don’t know. I still don’t. I don’t know how I find the strength everyday. I don’t know how I found the strength 5 minutes ago to face down a smoking dragon and spitting, aromatic pot of sauce. I don’t know how I’ve raised a child with a rare genetic disorder to the fine age of 9 and a brother with multiple differences by her side. Because, the beauty and the mystery of life is no one knows the how along the way and when we get there the how matters little anymore.
We get there bit by bit. Ingredient by ingredient–like making the perfect sauce. And, the recipe changes over time. I am certain my grandmother, a widowed mother of four children (two sets of twins) felt as though she would never make it to the next day until she did; and, she did not know how she would survive more twins when she re-married and had another set until she did.
Some pots of sauce are delicious, and some pots of sauce you end up tossing; they are all merely moments. Moments we must thread one to the next. And that, that I can teach to my beautiful little dragon child.
In the meantime, I need to remember to invest in more of the moments that replenish that which the dragons have taken away–like making a steaming hot pot of sauce.
“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.
Personal Essay, art and poetry on life, love, the human condition, and special needs parenting.
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Doing whatever it takes to make life easier for special needs families and the staff who work with them
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Raw, unexpected, special needs parenting
poetry and writing
Supporting those caring for kids with special needs!
Living in Atlanta, loving travel and watching my son kick tuberous sclerosis complex's butt.
Infantile Spasms. Partial Epilepsy. Surgical Treatment. ASD.