On Meeting Fears with Love

Learning to love the dragon
Learning to love the dragon

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.

On Breaking Free

mountain in distance
Forget not that the earth delights to feel your bare feet and the winds long to play with your hair. -Kahlil Gibran

My knuckles were white.  The body becomes accustomed to the constant flood of hormones; it’s like a pistol–cocked and ready.  Bucolic serenity stretched out before me, my family surrounded me, an audiobook droned on to match the thrum of the tires, and yet the body was locked and loaded for the fight or flight response summoned so frequently over the past nine years.

Hypervigilance is the technical term.  Logically, I knew this and the methods to combat it, but there is no logic even in a metaphorical gun fight.  I hummed air out hard through my lips and shook out my hands to combat the effects.  This was why we were taking this adventure north.  We hadn’t even made a half hour in the car and already I was ready to tag out, beat down by the demons of our extraordinary life.  This doesn’t even take into account the monumental demon slaying that occurred to get us to actual gear engagement and rubber meets road.

I drove; I always drove because it provided some false sense of control.  When one is a pistol, locked and loaded, ready to blow, and everything in one’s world seems like a life endangering threat (and often is), even a false sense of control can soothe.  If I could not beat hypervigilance on my terms I would beat it on its terms.  Check it beckoned, so I did.  Instinctively I looked up to the mirror just above the rear view to check on them–really, mainly on her.

I regretted my choice near instantaneously.  My regret was almost as quick and, likely, imperceptible as the tiny eye movements that I caught in my stollen mirror glance.  The eye movements that betrayed and revealed the specter of her disease following us, ever following us; the same ones that shattered my heart into a million pieces as they stole the sustained exchange of a loving glance; the ones so subtle her world renown neurologist struggled to catch them.  And, dang it, I just caught them in my seconds long backward mirror glance.

Hypervigilance, the ability to perceive the nearly imperceptible, is a superpower and a curse.  Logic is hyper vigilance’s kryptonite; “check the facts” my head screamed–a phrase I have learned to both love and loath.  Really the kids were fine, content, excited even.  The eye movements?  In isolation nothing more than a phantom and if not in isolation still not a problem and totally something we could handle without any issue.  I tuned back in to the thrum of the tires, it reminded me of my humming breath, I blew out hard, and I hoped this trip would remind me of myself without the nine years of pistol like reflexes.

“Mommy! This is the very first trip we are taking with no doctor’s appointments!”

I jumped slightly as his voice jolted my hair-trigger nerves. “Yeah buddy, that’s right; it is. Isn’t it so exciting?”

Specter be damned.  The disease tightly interwoven into her DNA would last her lifetime; her childhood would not.  His childhood is equally fleeting.  The eye movements and the email to the team I was drafting in my mind about those tiny flickers could wait.  It was summer and the road stretched before us.  In the words of Ellie from the movie, Up, “Adventure is out there.”

corn field with mountainsHypervigilance did not quiet easily.  It tugged at my gut like the tension in elastic band that firmly rooted us in place and stretched no farther than a couple hours from home or her main hospital in a major metropolitan area state away for the past 9 years.  Moments of respite and fun have always been planned around clinic trips and trips to events for the national charity for her rare disease.  Simple trips to Valentine’s Day parties or friend’s baptisms interrupted by the shrieking wail of sirens flooded my memory.  It threatened to snap me back and cause me to turn the car around.

“Look!” his voice erupted surprisingly deep for a fleeting moment for a six year old, as it could be at times, “Is that the mountain??”

The baritone in his voice, however childish and fleeting, always tugged at my heartstrings.  It betrayed his childhood and previewed a future he was hurtling toward at quantum speed.

His arm remained jutted through the middle of the car.  “No bud, that’s just a small one.  They are pretty though, huh?”

She giggled in response.  “Moose on the loose!”

She’s always loved the car.  She’s always loved and admired him more.

New memories awaited.  Four days, no doctors, no therapies, barely even a plan (though a well researched canvas of all the appropriate activities in the area), and an entire suitcase full of medication; because, as determined as I am to find our freedom this summer, I also understand it comes with certain requisites.  And, I’m ok with that.

Lush green mountains climbed around us and dove into deep valleys carved by rushing water; we drove and subtly, almost imperceptibly, the tension on the over taunt elastic holding us in place snapped, gave way, and we were free.  My shoulders eased as we entertained them with a car ride mix of eye-spy and scavenger hunt.  We stopped and watched the most delicious of grins erupt on their faces as we allowed them to choose candy for the car ride.  There would be no worries about over permissive parenting on this trip.

They both work so hard–literally untold hours of required therapies a week; and, this is their childhood.  The work of childhood is play; it is the stuff of magic and fairytale.  I couldn’t inject the two tiny letters back into her genetic code that would make it right, nor would I choose to given the choice (for those wondering: I would not do so because: 1) that is not my choice to make; 2) that could change her and I would not change her for the world.  Though, I would do anything in this world to ameliorate the health issues caused by said genetic deletion.)  I couldn’t wave a wand and make his struggles disappear.  I could, however, create magic and breathing room right along side.  And, we could make memories and rest.

That is exactly what we did as we broke free from our tethers of therapies and doctors, appointments and schedules, hypervigilance and fear; we made memories and rested.  They drank in the pure magic of childhood, we basked in their unbridled exuberance, and I was reminded of all the innumerable reasons why I love my husband so dearly.

My knuckles flushed pink in the hot sun, my grip a lot more loose on the return trip; still, I drove.  After all, four days is but a short time, and not enough to unlearn the last 9 years of engrained habits.

“Mommy!” his tired but jubilant voice interrupted the audiobook, “that was awesome, can we do it again?”

“Yeah buddy, it was.  We’ll do it again.”

We certainly will do it again.



On Friendship

A friends makes one a little more brave

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.

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.

On Inquisitiveness

Mother holding child's hand

Mommy, why is the sky blue?

And Mommy, why do you do that job you do?

Well, little one, it is just because.

And well, I guess, that is just what Mommy does.

But, why do trees’ leaves turn from green to red?

And, why do I have hair on my head?

Well, I guess, because of fall.

And, I don’t know, go play ball!

But, I want to know why!

Why do things fall down and not up?

Why can’t baby brother drink from a cup?

Little one it is just because.

I don’t know….

I don’t know….

I don’t know the cause!

But, but, but, why do birds fly?

And, why can’t I lie?

Why are you Mom?

And, why am I me?

Can’t you tell?

Can’t you tell me why Mommy?

Little one I do not know it all;

But, I know it is tough to be so small!

The world is big and hard to understand;

And, I am here to hold your hand.

I can tell you this one thing I know…

I’ll help you find answers as you grow.

We will never find all the answers why;

And, that is no reason to fret or cry.

You are you and I am me.

And, that is all we need to be.

You love me and I love you;

And that, I know, will always, always be true.

On Childhood Summers

Kids in summer
The work of childhood in summer

Bright sun penetrated the room waking me before both alarm and children—only summer can do that.  It was the first day both kids had a break in full summer programming; I looked forward with both excitement and trepidation to the day ahead.  My heart longed for the lazy haze filled days of the summer of my memory—no schedule, no obligation.  My mind battled the desire for the logic defying Insta-perfect pictorial squares of trips to the beach, water balloon fights, sticky-sweet popsicle hands against bathing suited bellies, and freckled-faced grins enjoying watermelon in the sun.  

None of that is our reality.  Our days are filled with extended school year services, Orton-Gillingham tutoring, various therapies, all dotted with highly structured summer activities when possible.  Rare-disease, autism, dyslexia, and the like robbed us of the summer of my childhood memories.  Skinned knees and bike rides, sun burns and hot sand, cool-air museums and humid fresh-air concerts, firework explosions of color and sound lived where danger and safety, relaxation and boredom were balanced and learned without schedule and without consequence; because that is the stuff of childhood summers—the work of it all.  

I grieved in the morning light for what we both lost.  When parenting the rare and extraordinary one grieves in triplicate—for what the child endures, for the loss of the child one imagined long before the child of reality was knitted into existence and delivered into one’s arms, and for one’s self.  The breeze of summer air blew in the window already heavy with dew and pressed on my chest laden with the threesome of grief.  Nothing brings it out for me more than summer.  

I heard the stirrings of children in the rooms across the hall.  I wanted so badly for this day to encompass the freedom for them to explore and us to adventure—for the bright day to take us where it may and for us to simply breathe.  But, for our family there is danger in that.  The lack of routine and schedule feels like a free fall to our sweet and anxious, rare beauty; like a delicate flower she only thrives in the most planfully balanced of soils.  Our twice-exceptional guy can hang with a lot more ambiguity; he is also the most loving of empaths with his own fragile nature that can be thrown asunder by his sister’s mercurial moods.  

When hope and dread play like the unnatural pair of fox and hound chasing round my mind and belly, the trained and cultivated nature of dread, like hound, snuffs out the wild nature of hope, like fox, offering it up for slaughter.  Dread was tempered by the morning snuggles, though even that is technically part of our daily routine.  I drank in the soft skin and pudgy fingers that would soon be transitioning to the more slender bodies and lanky fingers of middle childhood, tiny morning giggles, and the pleasantness that only a new beginning can bring.  

Dread crept back in when snuggles segued into medication time—a reminder of our reality and that I really had no plan.  To have no plan as a mother to special needs children, to a child with autism, is like a traveler crossing the desert with no water.  The fox of hope playfully reappeared and I clung to that; plans would wait.  Medicine first, then plans—the first, then language of therapy so necessary in our home etched into the architecture of my mind. 

That morning I was the Queen in Alice in Wonderland with such range that “Why, sometimes I’ve believed as many as six impossible things before breakfast” and ran the full gamut of parenting emotions.  Cereal clanked in bowls and pills were swallowed.  Still no plans.  The day would not be completely free of therapies.  Like God we only take one day off out of seven.  Applied behavioral analysis (ABA) therapy was the only one on the docket for the evening to support dinner routine; still the full day lay ahead like the long stretch of the earth’s orbit during sunny summer.  

I questioned whether I was robbing them of something with all this—only the Sabbath off, the first/then scheduled routine, the therapies—because grief and dread swept up a deep longing and today I wanted a day from my childhood.  Coffee, with its earthen smooth bitterness had a way of grounding me, and thankfully, as I drank in its warmth I found my balance. I heard them swashbuckling in the playroom.  First/then would wait.

This is their childhood.  It is not Insta-perfect, nor is it the 80s pool-dunked, bike riding adventures of my youth.  Their programming provides them what they need to grow and growing is done year round.  For us that means extended school years dotted with short jaunts to the pool, ice cream cones in the parking lot at occupational therapy, barbecues and backyards with therapists in tow.  It is the work of it all.  And, that would be our day.

That evening as I loaded hotdogs on the plates of the neighborhood kids around our picnic table who we slowly collected over the day our ABA therapist sat nearby.  Chalk and Orbeez littered the driveway, an iPad and a timer sat nearby, dirt streaked their faces, and they went to bed tired.  That is the stuff of their childhood summer.  My grief subsided and I retired that night thinking how very lucky I am that so many more than “six impossible things” occur every day; how very lucky I am to be their mother.  And, I mused, I had a delicious summer day. 

On What Is


Her eyes are a mix of brown and green surrounded by a grayish blue, like tiny wet marble models of our world; they are mysteriously old like the world itself and hold eons of the unknown.  I could stare into her eyes endlessly, if she kept still long enough for me to do so.  She is breathtakingly beautiful, perfectly imperfect, wild and free, and tragically broken just like our planet.

Water leaked from the blue ocean iris of her eyes, “Mommy! It’s hard!!”

The salty water streamed like rivers breaking the dry sand colored surface of her cheeks and I had to look away before answering her.  “Baby, I know; and, you can do hard things.”

I turned back to face her.  The earthen-clay color of my eyes reflected back in hers momentarily.  I wasn’t lying, but still I had trouble holding her gaze.  The truth was she did hard things every day, all day.  Most things for her are like trying to grow crops from drought starved fields; difficult and seemingly impossible.  Yet, miraculously she grows; like the verdant sprouts that eventually blanket the most unlikely of parcels.

Everyday I wish things were different for her; but, that would be like wishing the wet marble we live on was not brown and green surrounded by a grayish blue.   

On Freedom

On Freedom
Searching for Freedom

The sun shone in hot, grazing my knuckles with its rays as the air rushed in from the open window smelling sweet and sticky, a mix of mature chlorophyl and highway fumes, and for a second I almost felt peace.  I caught a glimpse of another driver, window down, hair blowing in the wind, and I wondered where she was going or what she was doing and I imagined her freedom.  I lost myself in a moment of reverie, as I often find myself doing these days, imaging the days when I was free from seeing the reality of life and knowing those days of freedom are forever gone.  The moment lasted but the space of a couple inhale and exhales until I heard her tiny giggle in the backseat and I was snapped back into reality; until I felt the massive weight of responsibility suck in around me. Responsibility like the crushing pressure of water that can rush in to any tiny hole or deformity found in a vessel at sea and displace all the air and eventually crush massive structures sinking them, banishing them to the ocean’s depths; responsibility so massive it is like an ocean.  

She yells, “Fresh air!” and laughs again that magnetic giggle that forces all those around to involuntarily smile. 

I smile with a twinge of pain as I think how oxymoronic that something so pure and joyous could suck all the air from my lungs and snap me out of the closest moment to freedom I have felt in the longest time.  She is almost 9 but still has the giggle of a toddler, like many of her other features.  

We are behind the clock, again, rushing to pick up brother; coming from an appointment at the hospital, to get him, and to go to his therapy.  This is the third therapy of the week; it’s like soup du jour, every day has it’s own flavor of therapy, mostly for her but also some for him.  The car sways with the turns, a little too much, it needs new suspension but we can’t afford it, therapy is expensive, doctors are expensive, this life is expensive.  

“Baby, Mama’s had enough fresh air I’m gonna roll the windows up now.”  

I feel my breath being sucked out the window like the air being displaced by water in someone who drowns, and I just need the window closed; but there is no end to this drowning, no rescue and no death, just the ever pressing weight of responsibility and no way to swim through it.       

I hopped out of the car and the sun hit my back warming me, I hear the noises of summer in the background and wax nostalgic for the time I worked summer camp; I love children more than anything else in this world, I love working with children, talking with them, teaching them, everything about them.  How could I not know it could be like this?  I opened the car door to help my nearly 9 year old out of her car seat, a full 5-pt harness car seat.  I have religiously buckled her in and out of a car seat for 9 years and will continue to do so for the foreseeable future; it’s easy to forget about the monotony of care when they are stages in the developmental march of childhood until the march forward is halted and becomes a never ending merry-go-round.

I prayed as we walked that nothing behaviorally “unexpected” happened at camp today, to who I prayed I’m not sure, because I stopped believing there could be any benevolent spirit in this world the day I resuscitated my daughter in our living room while her younger brother lay sleeping upstairs.  Whatever juju there was left I must’ve squeezed out of the universe with that prayer, because we managed a successful day at camp and emerged from the shadowy cool basement of the school back out into the blinding sunlight of the parking lot and back we climbed into the car, ball and chain of responsibility following like the shadow of memory that I can’t seem to escape every time we enter the car, the one that causes my heart to quicken its pace and my mind to replay every time she slipped into a seizure in that car seat I have buckled her into, the one that is supposed to keep her safe, but does nothing to protect her from her own body.  Her body, the one I tragically knitted together for her, irreparably broken and in need of support for the rest of her life, both beautiful and tragic, and eternally entrusted to me to defend and protect.

They asked for music, just more din added to their quibbling, the buzz of the tires, and the constant internal dialogue; scheduling, dinner, scheduling, medications, scheduling, to-do, birthdays, what-ifs, politics, am I doing enough, the general on goings of the mind, ever churning like the constant whirring of the gears of a clock inside my head.  It’s such a beautiful day, what happened to my freedom?  I wonder where that woman was going, wind blowing in her hair as she drove down the interstate.  I think this is nothing like I imagined it would be and I know it is never as anyone imagines it would be, but all this with its constant therapies and medications and doctors and emergencies is really so very far from anything anyone could imagine.  I love children, they are all I ever wanted, it can’t all be crushing responsibility like the water that rushed in and crushed the Titanic like an empty Coke can under foot.  

Friends have children, they drive with the windows down, and breathe deep breaths that fill their lungs with sweet air that smells of lilacs and cut grass.  They still experience the delicious freedom of life.  They take swim lessons and piano, they complain about dance class and the cost of costumes, they worry about reading and enrichment, and what type of organic sunscreen is best to protect their intact children’s bodies; they live on the sandy beach and I live in the crushing depths with the rusty wreckage of those who have drown long ago.  I live where my lungs cannot expand.  My lungs cannot expand because I live in the world of therapies that are a have to instead of dance classes that are a want to; in a world where I look at the medications sprawled out on my kitchen table readied to be dispersed into their neat weekly planner and come to the mind-numbing realization that the cost of one month of these medications combined is literally double the average U.S. yearly income (yes, yearly!); and a world where everyday is spent moving crisis to crisis.  I live in a world where I am meant to pretend I can breathe because it is the polite thing to do in the company of those who find breathing so natural.  Occasionally I find others like me amongst the wreckage, drowning at the crushing depths, we share knowing looks, and try to help each other the best we can but the problem when you are drowning is there is no way to help another who has sunk to the bottom of the ocean.  

I’ve lived this life so long I’ve almost forgotten what it’s like to have lungs that move in and out easily like the well oiled machines lungs are meant to be.  I forgot until I saw a young woman driving down the highway on a beautiful summer day, hair blowing in the wind, and longed for the freedom of healthy children giggling in the seats behind me and a destination unplanned rather than the therapy du jour.