Winter’s night looms long
Like the day’s pregnant shadow
Birthing dream or dread
Winter’s night looms long
Like the day’s pregnant shadow
Birthing dream or dread
Have you ever felt on the edge? A razor’s width away from the world crushing you? Have you ever thought maybe you should let it? Have you ever wondered what would happened if you stopped holding it up, like enduring Atlas, and let the sky fall?
Of course you have, because you are like me–blessed and burdened by circumstance; you are a parent of the extraordinary. The weight is unimaginable and the task so tiring; for who can hold up the world and the sky?
Nevertheless, we persist.
What is the alternative? For the sky to come crashing down?
It does that anyway; it falls with every crisis, every diagnosis, every meltdown, every school meeting, every stare, every medication failure. And, that is why it is our job to hold it up. It is our job to make sense of it all every time the earth shakes and another crisis rips the heavens from the firmament. It is our job to piece it back together–azure patch dotted by fluffy white, patent-leather black pin studded with shiny bright diamonds.
We must make sense of it for our blessed and burdened, extraordinary pieces of heart walking around outside our chests. For, if we didn’t there would be no understanding, no up or down, no hope. We would be crushed by nature.
Who makes sense of it for us–holding the earth and the sky, picking up the pieces, placing the stars back one by one? Who makes sense of the nonsensical? Who helps carry crushing burden when we fear it will flatten us? When we are weary and we wish it to?
I do. We do. We shoulder our burdens together because we are the few who can understand the job–the immense burden and blessing. We link arms and hunch shoulders to disperse the weight as we speak of the crises, and diagnoses, the meltdowns, and meetings, the stares, and medications. We stoop low and scoop the scattered stars and shattered blue canvas of sky the next time it comes tumbling down and help to paste it back up again–and again, and again.
Nevertheless, we persist.
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.
In the quiet cold
Bright new beginnings emerge
Gray strength resolute
I grew up in a small town in the New England; it’s rumored that when I was born there were more cows in the town than people. As a teenager, pre-license, I resented the long expanses of subdivisions, corn fields, and barns housing dairy cows; they kept me from freedom. I dreamt of big cities and bright lights; art and music; most of all, I dreamt of freedom.
I dreamt of a place where I was free to shed the cloak of expectation that shrouded me and manifest my own destiny. Perhaps, it was not this at all, but rather, the familiar dream of trading places. Perhaps, I was caught in the universal theory of mind game–what would it be like to be her, or him, or anyone other than me in this stifling place?
When you grew up in a town where everyone knew your name they tended to also know your business. Ironically, nobody there really knew me at all. It was the strangest sense of isolation. I spent my life surrounded by those who had the utmost familiarity and simultanseous estrangement. It was the confusion of being met with the assumptions of others then surprising them, letting them down, or simply being completely misunderstood.
This was a strikingly similar experience to parenting a child with rare and extraordinary needs.
Recently, another mother of a child with rare disease told me that she never thought about running away when she was young; but that she probably thought about it way more than she should as a parent to a child with special needs. Her experience is not unusual. Research has shown that mothers of children with autism have stress levels similar to combat soilders. Who in our line of parenting wouldn’t at least imagine themself somewhere, or someone else? Nevertheless, she likely wouldn’t share her deep desire to escape or trade places with most of her mama friends (yet I’m the one who goes writing it on the internet for all to read) for fear of being judged or misunderstood.
Parenting a child with rare and extraordinary needs is like living in my childhood small town–there is a simultaneous familiarity and estrangement. Most of the people we run into in our day to day interactions are other parents who have some understanding of what it is like to raise tiny humans–there is a familiarity. Yet, our world is so very different than theirs; it is full of complex medical jargon, life or death emergencies, therapies on top of therapies, the bittersweet meeting of milestones, and milestones that will never be met–there is a complete and utter estrangement.
Much like my adolescence, parenting my children has been an isolating experience. I am surrounded by others who hold assumptions of what both me and my brand of tiny humans are and should be like. Over the years I have learned to brush the well-intentioned yet oblivious, parents aside, but it remains a part of my daily life to deal with doctors, nurses, therapists and school administrators who I must educate and shake free from their shackle of assumption in order to see me, but more importantly, my children clearly.
Perhaps hardest with which to deal is the desire to feel free–it is similar to that adolescent desire for freedom. Parenting children with excptional needs can feel stifiling. All parents trade some dreams to care for children and for special needs parents it is more than that. There is no end date in which you can say, “when my child is in kindergarten I can return to work” or “I will get my Master’s when my child is in middle school.” We are forced to surf the wave of our child’s needs no matter how capricious the sea. There is an inexplicable trapped feeling that accompanies that reality.
Despite the stark reality of parenting a child with extraordinary needs, there is great love and great hope. Unlike the dial-up days of my adolescence there are a wealth of resources online to find your Tribe of fellow parents and decrease the isolation. There is also freedom in the very imagining itself–to dream of yourself as someone else, somewhere else–and to run away in your mind–if only for a little while.
I used to dream of bright lights and big cities, art and music; unfortunately, I spend way more time than I would like in a big city, Boston, for medical appointments with my crew. Not exactly what I dreamed of; yet, I still permit myself to dream. I find the time when I can to get lost in my favorite place on earth, The Isabella Stuart Gardner Museum. I stand at the foot of John Singer Sargent’s, El Jaleo and I imagine what it was like to be the Andalusian flamenco dancer.
I trade places places in my mind’s eye and imagine myself deliciously free and moving to the beat. And, in that moment my burden is lighter, my dreams more vivid, and my soul reinvigirated.
I have a magnet of El Jaleo on my refridgerator. In moments of deep despair, when I feel as though I cannot meet the challenge that has been bestowed upon me, I imagine myself the great Andalusian dancer and I buy myself a moment of freedom.
How ironic that a woman forever trapped oil on canvas can make my soul feel so free. I guess that is the magic of dreams–we can imagine ourself anyone and anyway we want to be; whether that be far away from small town New England or the high-stress, high-demand world of special needs parenting.
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.
Light sleepily stretched in through the curtains tickling my nose; it was a nice contrast to the blare of my alarm. Summer days were waning, though the heat gave no signs of giving in, and school days had arrived.
He burst into the room and I knew by the sight of his face that something was already amiss. I asked sister to scoot back into her own bed; she lay limbs akimbo next to me. She huffily popped up and went about her business like a volcano rumbling to life; yet, another symbol of things to come.
Brother settled in and buried himself in me. Moments later out spilled every fear great and small that was packed into his tiny body; it escaped like a torrent through his mouth and flooded the room in a thick heavy anxiety-ridden smoke that choked and colored the sweet morning light in frightful shadows. His head was heavy on my chest; it rose and fell with my breaths and his fears weighing as heavily as his precious crown. I wished this had at least waited until coffee; life never waits. As his mother this was my job and as much as I fear everyday that I am not enough I had to steel myself for him, coffee or not, and surround him in love.
Through the smokey fears I focused on the clear blue of his eyes, slowed my breath, and settled him–co-regulation in fancy terms. I remembered not all battles are won by overpowering, battling and beating the enemy into submission; and I helped him chase the fire breathing dragon of fear creating all the smoke by asking question after question–“and if that happens, then?”–until we landed at his ultimate fear. And then we surrounded that dragon with love. Kay Redfield Jamison wrote, “The Chinese believe that before you can conquer a beast you first must make it beautiful;” in a way that is what we did. Slowly he rose and we moved along.
A wise woman once told me, “mixed seems to be life’s favorite mode.” Nothing is more true in the life of the rare and extraordinary. The diagnoses both my children carry bring with them simultaneous tragic and burdensome hardships as well as tremendous, unique, and phenomenal gifts. Life is in the “both/and;” it is a beautifully messy mix of light and dark, yin and yang, joy and sorrow, comfort and pain. As the dragon spreads his wings readying himself to spew self-doubt, fear, and shame to erode the tiny six year old warrior wrapped around me, sidled right along side are his gifts of intense sensitivity, deep and expansive thinking, a verbal capacity to rival someone in their double digits, and infinite kindness ready to meet it.
My job as his mother is not to slay the dragon for him–it is his battle; likewise, it is not to erase the cruelty of the dragon–the dragon is part of him. My job as his mother is to hold the both-ness of it all for his young mind; it is to breathe with him through it and share my calm with him, share my strengths, my love, and help him learn to balance the intensity of it all. My biggest job is to be a mirror for him and shine back his exceptional strengths–to highlight them so that he may learn to depend on those strengths and himself in the future. Both are true for him.
One of the hardest parts of mothering the rare and extraordinary is learning that one can not do it all, one can not “take it away,” “fix it,” one can not schedule enough therapies in the day to take the hard parts of life away, and that one cannot be everything that one’s child needs because one’s child’s needs are so vast–so expansive–and specialized that one must rely on others to help give one’s child what they need to thrive. Mothering the rare and extraordinary is also about remembering in all of this that one’s child and one’s self as a mother is perfectly and wonderfully who they are meant to be–scars and all. It is the “mixed mode of life”–it is the “both/and.”
My love is fierce and it is powerful. My love is a hurricane of gale force wind-reckoning and a delicate breeze caressing the cheek of a child; it is both terrifying and wonderful. I am both. My mothering is both. It is all in the balance.
Part of mothering is also learning that one’s children mirror back one’s self as they learn and grow. I am mothering them well when I claim myself in my entirety–when I make my beasts beautiful, when I stand tall in the both-ness, when I claim space, when I shine a light on the parts of me that live in the shadows and proudly proclaim them as mine in my wholeness. That is more powerful than any additional therapy I could cram into our already bursting schedule.
We are all a simultaneous mix of vulnerabilities and strengths. For the rare and extraordinary the volume is raised until deafening. Everyone deserves to have their vulnerabilities met with love and their strengths mirrored back to them. Claim your space. Love your dragon. The greatest power comes from loving that which seems most unlovable.
Personal Essay, art and poetry on life, love, the human condition, and special needs parenting.
A Storylearning Library for Sensory Readers
Doing whatever it takes to make life easier for special needs families and the staff who work with them
journal of life, heartache, and art
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.