In the quiet cold
Bright new beginnings emerge
Gray strength resolute
In the quiet cold
Bright new beginnings emerge
Gray strength resolute
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.
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.
Sun caught my glasses and reflected brightly, the glint snapped me from my momentary space-out. I was firmly back in the stale conference room, at the crowded table, sat in a chair feeling oh-so-small in my decently large body surrounded by administrators delivering the unpleasantries that had broken my trust once again. The daydream of whirring cogs brought on by the janitor and his humming waxer outside the room seemed preferable. I imagined myself getting caught in the spinning gears, limbs haphazard and jammed in the machine, everything halting to a complete stop. The daydream metaphor seemed apropos.
I was here before, I am here often, and I, sadly, would be here many times again. Here being the place where I must trust a system with that most precious to me. All families of the extraordinary and rare are forced into such systems. In fact, my family, like all those other families, has been reduced to a cog–a component–in the machinery; we are confined and operating within several simultaneously running systems. We are at the mercy of these systems because they are an essential to our children’s survival; trust in them has become a necessity rather than a treasured prize that is earned.
I attempted to tune back into the school administrator’s voice despite my crushing disappointment and rising anger–a mother’s strong defensive reflex for her child is a near impossible thing to suppress. It is a craft that has taken me years to master. When my girl was young my anger at the systems we had been thrown into–insurance, medical, early intervention, state agencies, etc.–boiled over, and I would rage against the machine. Gears and cogs would grind to a halt and all the wrong doing on the part of the system would be placed upon me and my anger. Trust was an impossibility; I knew trust as something earned for reliability, truth, strength, mutual respect, and none of this was present within these systems. Within these systems was a huge differential of power, obfuscation and irresponsible practices, at times, and, at others, there could be beneficial assistance–nothing was reliable.
Back at the table, my reaction must remain suppressed; there was no room for the natural, the primal, the emotional, in a machine, and that was in what we were working. I remained stoic and betrayed no hint of disapproval in the system; special needs families must be like Tin Men soldiers, no hearts, and no tears to rust their working parts.
A thrum from above announced the impending rush of cool air from the vent; it reminded me to remain cool. Only those with the power are allowed to openly express the emotion involved when the system chafes them. There are rules and we had to work within the rules provided; and I had to trust, once again, that the rules would be followed, even though the very meeting we were having was about the people who hold power over me and my children, who are entrusted to provide my children with the services they need to thrive, their failure to adhere to those rules.
The administrator let out a long moaning sigh that sounded like the whine of a broken machine. Her face looked tired and I read a hint of defeat in her expression. Perhaps the whirring of the cogs was maddening to her as well. I imagined Mitt Romney and his ridiculous, “Corporations are people, my friend,” comment; this administrator was a person stuck inside the enormous machine they call the American Public Schools.
“The Public School System is a person, my friend,” no more than is a corporation; but the people within each are. And, as her monologue was interrupted by the shrill sound of the bell system, still set though it was the last waning days of summer recess, I thought there was no possible way that this woman entered into this system to deprive my daughter of the resources necessary for her to succeed. I had to trust, because that is where trust is built, person to person, within a relationship; and I opened back up to what she was saying and settled the rising tide of reflexive mother’s anger.
I’ve begun to learn this lesson ever so slowly: place trust in the people within the organizations worthy of it and never expect that the system itself will be trustworthy. Trust enough in the people within the systems for their expertise to lift your burden and help, but never so much to let it override you self assuredness, gut instinct, empowerment, and advocacy for your children. Remember that people enter into these helping profession systems because they want to help people and they are just as stuck in the machinery as the families who are trying to utilize the services.
The school had let my daughter down again and, by proxy, me; this was not the first time and it would not be the last time that my trust was shaken. I pushed my feet hard into the floor and grounded myself when the administrator ended speaking and I began from a place of guarded trust that she within this particular broken system would do her best to right the wrong. I clearly and calmly addressed step by step what we would accept to correct the wrong and left; that’s the only way I have found to break us free from the insidious grip of the multiple systems wrapped so tightly around us for such a great majority of our family’s life. I walked out into the sunshine, collected my children, and we enjoyed our day outside the whirring of gears and with in the fantasy of play at the park.
My heart grew with you
Life breathed into existence
My world never the same
She called her name eagerly as our girl entered the room, “I saved a seat for you next to me!”
The beckoner’s wide-toothed grin, permanent teeth exposed still struggling to emerge leant a dazzle to her eye; her genuine nature drew our sweet girl in farther. Months could elapse in our hectic lives when they did not see each other and it was if no time passed. Our girl tentatively entered the overwhelming atmosphere of the noisy birthday celebration and sidled up beside her…
Her friend, two words that are a salve for this mother’s heart. The contemporary word “friend,” devalued more readily than a foreign currency on the market exchange, is so commonplace it is hard, at times, to recognize when a relationship befitting of such a definition is right in front of one’s face. There it was and had been growing in its own unique. My girl sought shelter next to her confidant and enjoyed the comfort of loving company; as if all that pushed at her most vulnerable of places at that noisy party melted away in the dynamic of their duo.
The complex landscape of social interaction does not come easily to our girl; that does not mean she does not deeply desire it. Like a gardener tending her plot our rare beauty has worked tirelessly to sow the seeds necessary for the blossom of relationships between her and her peers to grow; and, like every gardener, she has had her share of weeds to contend with and flopped crops along the way. Sadly, she is often heartbreakingly lonely.
Many people, including the tiny ones, would much rather attend a flower show than hang out with the gardener who is messily putting in the work. The reality is we are all gardeners who struggle with some area in our garden–for some it is just more obvious than others. In gardening we produce the sweetest of blooms by caring enough to want them to grow and nurturing them, not by showing up at a flower show ready to admire all the beauty. Our sweet girl is the type of gardener who can’t even just show up at the garden show ready to admire all the pretty flowers, pick some out, and hang; she has to get muddy just to have the skills necessary to think about flowers. It’s a lot of work for her that she so bravely and willingly committed to–for the sake of some beautiful results.
Her sweet friend connected to our girl when they were but little things in preschool; their kind hearts and genuine natures transcend all the external noise. It matters not the deficits or developmental gap between the two, because they tend to what they have together–a beautiful blossom of friendship. I hope it is like this for more and I hope it continues for many years to come.
Words, to me, are like water; they are life-giving and essential. I drink them in deep to make sense of the world with in me and around me. Gentle like the trickle of a playful stream and powerful like the torrent of crashing waves in a violent storm through rain, snow or ice, water like words hold magic in the ability to take many forms. Words matter and defining and clarifying why within our great lexicon is especially important when raising children with special needs.
One of my greatest personal griefs as a mother is the loss of connection with my daughter over my love of words. Language for her is foreign. The nuances of language are dull and imperceptible; it is like trying to discern stars in the orange-brown of the light polluted sky—it all becomes muddy. To me words are sharp and precise with a woven tapestry that is like a picturesque view of the Milky Way through the most detailed of telescopes. Nevertheless, words matter and there are certain lessons nuances that must be not only be taught explicitly through definition but also breathed into life and experience for her and all our benefit over and over again.
There is a difference between secret and private.
Foundationally and fundamentally this distinction must be infused in the fabric not only of our lexicon but of our lives; it is important for everyone and it is exquisitely so for us. The difference is far reaching with impact both practical and abstract.
By definition, a secret is never meant to be shared with others; it is the burden of one or a very selective few to carry. Whereas, private is something belonging to someone or a group that is chosen not to be shared with others.
Even for a wordsmith, this nuance can entangle. Here is why it matters: our struggles are not a secret; they are private and that means we choose who, when, where, and how we share them because they are shareable–meant to be seen and carried by others. Secrets are the breeding ground of shame and the enemy of vulnerability. Queue the Queen, Brené Brown.
Special needs, mental illness, significant sickness and the like have been relegated to the dark shadows of society–institutions, the homeless we walk by trying not to make eye contact, religious charities, etc. If one had a family member with epilepsy, autism, intellectual disability, rare disease, then it was not meant to be known; it was a secret and with that secret carried great shame.
We have made great progress in the past hundred years in our society and we are still living in a society that treats disability as if it is a secret. We speak of disability in ablest terms: overcoming, beating, fighting, etc. It is as though we are constantly expecting those living with disability and their able bodied family to beat back that which is integrally a part of them and the fabric of their lives, of their family dynamic, into the shadow; to make it secret again.
Our struggles are not secret they are private. They belong to us and we choose who we honor with their sharing. We do so in a safe and planned manner that shares what we want when we want. In doing so I commit to sharing what is mine. That means I share my experience as a mother of children with Tuberous Sclerosis Complex (TSC), autism, epilepsy, cortical visual impairment, dyslexia, AHDH, and more. It means when I give pieces of my children away to others I ask myself first would I want this told about me; I ask this not because there is something to be ashamed of but because I respect their privacy and their choices. And, in asking myself these questions I am teaching them the meaning of privacy.
We must speak this to life; if we do not then it becomes secret. For a child whose neurology does not afford them the regulation to keep their experiences internal in public (read: meltdowns), it is vital to empower them with the understanding, empathy, and deep compassion that it is okay, more than okay, to be seen during struggle. We all struggle and that it is not secret. Their struggles, just because they may be more intense, loud, violent, scary, public, are not secret or more shameful than others. This also means we as parents must work to afford our children as much privacy as they want and makes them feel comfortable.
The lesson of secrecy versus privacy breathes agency to life. The impact is far reaching. When a child knows that their body is private not secret they also know no one should transgress against it. This is vitally important for children with special needs who are more vulnerable to abuse and potential sexual predators. For a child with autism who has hard and fast, black and white rules for language and living it is life saving to teach that secrets are never ok and private and privacy is a right that is all theirs.
The life giving water of words suits me. It is a babbling brook that feeds my family and protects them. It gives them shelter and private place to pour out their deepest selves.