On Bravery

September skyThere was something about the late September sky and the clear day–the sea of blue interrupted only by clouds of fluffy white juxtaposed against newly wheat-colored grasses.  It was like an expansive ocean washed across the sandy beaches of land.  Warm breezes blew rustling the drying grasses and harkened change.  Every year I welcomed September with excitement and trepidation; and as the sun tickled my nose and I drank in the firmament I knew this year would be no different.

The time expired on my brief contemplation of the beauty of autumnal awakening; the door creaked as I wrenched it open, hands over-full (as usual), little voices came back into focus flinging the word vomit in my direction.

Buckled in and on our way my September baby resumed his word barrage:  “My birthday Mommy!  My birthday is soon!  I want a Percy Jackson party and we are going to make Camp Half-Blood necklaces and we can have sword fights and I can dress in armor and I want a projector for my birthday that projects things onto my walls and ceiling and I’m in the Poseidon cabin and we need to pick cabins like we did last year when we sorted my friends into Hogwarts houses at my Harry Potter birthday this is going to be so cool!  Mommy!  Mommy!!  And I want you to make mini Poseidon figures to go onto my cupcakes or maybe we can have a cupcake cake or just a cake.  Make sure you get my bro* his allergy cupcake. Mommy! Mommy? Are you listening?!”

*his best friend

My head swam through the expanses of crystal azure above cut through only by the dark asphalt scar I drove down to our next therapy appointments.

Shoot. I was caught out.  He was talking and it was all muffled Charlie Brown teacher like.

“Yes, bud.  Sounds good.  Except maybe something you said about the cupcakes sounded a little complicated.  We may need to be flexible about that.”

He resumed the machine gun word fire and my head continued to swim as we pulled into the parking lot to split up. My husband waited to take one kid to one therapy as I took the other to another.  We unloaded, arms overly full again, save for a few fingers for sister to grab as we traversed the parking lot.  The smell of apples was in the air.

“Mommy, you heard me right?! We can do all that for my birthday?” he said.

“Probably, buddy.  We’ll talk about it when we get home.”

We exchanged quick hugs and kisses as he climbed into the car seat in my husband’s car.  The husband and I said a quick hello and an even quicker goodbye; only enough time spent together for a graze of each other’s hands to meet–not even a hug or kiss.  I retook sister’s hand in mine and breathed deep; smells of apple and dry grass filled my lungs.  And, I was transported back.

God, I love and hate September.

As I breathed in, the smells carried me back to the carnival, belly round with baby, and toddler in tow.  She was dressed in bright pink pants and a chartreuse shirt that hid the Holter monitor (heart activity monitor) attached to her chest–cheeks chubby and slightly chapped (from teething and messy food)–as she rode in her brown stroller.  It was the last weekend we spent as a family of three.  I remember it viscerally; the sheer terror mixed with unbridled excitement and joy–wild and bright like the September sky.

We sat her on a bright red tractor to take a picture and to let her play with the steering wheel and buttons.  Suddenly she was slumped over on one side and rigid on the other, arm slightly shot up, and I rushed to press “record event” on the box attached to my bionic baby while making sure to hold her so she didn’t fall off the tractor.  I whispered a silent prayer to the cosmos, because by then Tuberous Sclerosis Complex (TSC) had stolen any belief in an omnipotent and benevolent being I had left, that it really was “just” her heart and some weird kind of fainting episode.  My gut knew better.  These were seizures. Seizures of the worst variety–infantile spasms.

Panic suffused my being: How was I bringing another life into this chaos?  What if the baby squirming around my now tightly compacted abdomen was also born with this devastating rare genetic disorder?  We had all the testing done and knew that our beautiful girl’s case was a spontaneous mutation; a base pair deletion on her 16th chromosome with a frame shift.  A completely random slip up in her DNA that made it like her cells were dialing the wrong phone number–as though my body rang up a terrorist when it knitted her together in my womb.

A 1 to 3% chance that it would happen again was what we were told by all the experts.  He had been watched closely for signs by multiple peeks inside the womb as he grew.  There were no signs.  But, there was no trust when you unknowingly weaved a terrorist into the cells of your sweet baby girl.  The world became topsy-turvy.  There were landmines under bright red tractors at the local country fair.  That was the world we were bringing him into.

September stole my breath.

The door to the old farm house in which her therapy was held squeaked open and someone slipped by us as she squeed happily almost tripping them on our way through.  I slid down on to the slippery cool leather of the couch and was again transported back.

I gripped the arm of the pleather chair of the hospital waiting room, white knuckled, and looked him dead in the eye: “I can’t do this.  I want to go home.  We’re not doing this today.  He’s staying in there.”

He calmly said, “He has to come out somehow.  And you have to have a c-section so it’s now or soon.  It’ll be ok.”

In the room, I stared out at the clear blue waves capped by clouds of white foam in the September sky, draft blowing through the back of my johnny gown mimicking the breeze rustling the leaves, and every cell of my being vibrated with fear.  I had grown accustomed to living with a terrorist.  In the startling quiet of the prep room, I steeled myself and time stood still; til it was shattered by the sweet sound of his shrill newborn scream.

September breathed new life into me.

She hopped onto my lap despite the expanse of couch that spread horizontally from me and turned back, as she so often does, to put her face so close I could feel the moisture of her exhale.  Her face widened as she smiled, eyes squinted by the pudge of her cheek, and she examined me.

Her smile the same as always; as though frozen in time and transported through Septembers from atop the red tractor to atop my lap on the well-worn leather waiting room couch.  A smile so innocent and carefree you would never know it lived along side a terrorist; that it has survived heart failure, infantile spasms, status epilepticus, years of a ketogenic diet, and more in her short lifetime.  The smile that welcomed a brother to our clan and dubbed him “bud-dy.”

Therapy was over for the night, we were home safely, and the September sky was painted ablaze with the fires of sunset; the air in the house smelled soapy clean of bubble bath and the sound of giggles echoed off the walls.

“Moooooommmy!  It’s gonna be brudder’s burfday soon!” she shouted.

He ran past milky skinned and rosy cheeked–still holding on to the cherubic looks of early childhood–and I was suddenly struck by the magnitude of my love for him.  And, their love for each other.  They ran through the house full of giggles and shouts challenging the dark corners, and the terrorists with in and with out.  I contemplated how that love changed me and how I deal with those terrorists.  It is a love so strong, “you did not know you were capable of feeling, primal and angry and powerful, you would kill ten men and Satan if you had to.”  A love that looked a lot like bravery.

September made me brave.

Sometimes bravery is as simple as a smile.  It is bringing a toddler, your belly round, to a carnival, despite her Holter monitor, your own fear in tow.  It is birthdays and brothers.  It is love.  It is living along side the terrorists because there will always be something to fear.  Bravery is living your life anyway.  It is bath time and rosy cheeks.  It is clear blue skies with fluffy white clouds and American flags blowing in the breeze because we will not let them take away our freedom.

Bravery is a six year old little boy looking into his mother’s eyes and asking, “so you’re way older than me so when you’re gone and sister and me are older, and she can’t drive, am I going to have to drive her everywhere?  Am I going to have to take care of her?”

It is being flabbergasted and saying, “There will always be someone to take care of her and if you want it to be you it can be but that will be your choice, and you will have lots of time to make that decision when you are a lot older, buddy.”

Bravery is living in the ambiguity–the never knowing if you made the right choices.  It is having a second child after a tiny devastating deletion in DNA in your first.  Bravery is quiet resolve.  It is fear and love.  It is primal, powerful, and angry–the will to kill ten men and Satan if you had to–or it is not.

Bravery is September.

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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 Yielding

mother reading book
Sharing the world of words

His smooth skin skin rubbed against my arm and the tension of the day melted as we dove headlong into the alternate universe laid out before us on the page.  I drank in his sweet smell–a unique childhood mix of the remnant of fresh outdoors and bubble bath.  The quiet time I shared with him reading was my favorite part of the day; a sacred time reserved only for the two of us.

It was the fourth book of Percy Jackson that night, following a particularly difficult day. The day had been spent draining the gas tank in a circuit around half the state for a rapid succession of doctor’s appointments and therapies.  Our shared time had been staccato disjointed car riding and waiting room rendezvous.  I was tired and I didn’t even particularly want to read, and there were innumerable reasons why I did.

His skin reminded me of him as an infant and I longed for the days when things were simpler, and for us that was saying a lot because there was nothing simple about two children in rapid succession one of whom had a rare genetic disorder.  As I read on about demigods and gods, Titans and Olympians,  quests and battles, my mind wandered to my sweet, sweet boy.  Was I failing him?  Was I failing both my children?  Was this all simply too much for him?  Was it what he needed or what I thought he needed?

Damn that Sally Jackson, Percy’s mother in the book series, she gets me every time!  My son, like Percy, is just a little different.  Was I doing him a disservice with all this running around?  Maybe he’d be better off spending all that time figuring out what works best for him in this world rather than all of it in my silver Kia chariot from here to there and in fancy sensory training gyms.

Who am I, from my limited world perspective, of living and learning in the way that I did to say what is best?

…other than his mother.  There is something to be said for that.

Sally Jackson recognized this for Percy.  She recognized that her life as a mortal would not allow her to understand certain things about her demigod son, and as such she made her decisions based on mother’s intuition and love.

She held strong and she yielded.

We all desire our children to be like us, save for our faults, be better than us, have more than us, and to succeed.  A dream for the future was knitted like a shawl to shroud the baby in before he was ever born.  When born he was swaddled in his shawl of dreams and cared for by those who dreamed them.  Some dream shawls are translucent covers one can see through; those cover the child for all to see both the child and the dream as he grows.  Yet, others are thick opaque armor that obscure the view of the actual child and stunt his growth.

I believe I bestowed my son a translucent dream shawl, yet it is often hard to be objective in the case of your own child.  Even the very time we spent reading together was an adaptation from the dream cloth I wove.

Our house is filled with books; there are bookcases in all the rooms save the kitchen and bathrooms.  Our house is this way because it is what I value.  The world of words is scaffold for which I hold up and make sense of my universe; for my bright boy, written text is a formidable landscape with no easy access.  This used to panic me, frankly, it often still does.  It pained me to the depths of my soul that written word was laborious and basically inaccessible.  I used to spend the time during the evening having him work ever so diligently on reading to me, as strenuous as that could be for him; because, in the end my desire was for him to become a reader.  Until I shifted, and ensured access to the difficult textual terrain by serving as Sherpa and read aloud or played audiobooks.

He and I now share a special connection because I granted him access to text and fostered a love of reading.  I held strong and I yielded.  Because, my dreams for him are finely woven, intricate, and the strongest uniting thread is a desire for him to be valued, loved, seen, unburdened, and free to become whoever he is meant to be.

During our shared time, I bring my boy into the land of literature and we take grand journeys together; in return he has granted me access into the most magical and deep thinking recesses of his universe.  That is the most gracious gift anyone can be given–access into one’s inner landscape.  If I did not yield I would not have been granted such a gift.

This leads me to wonder on what other areas I should yield.  Perhaps I should take a page out of Sally Jackson’s book, ask my son, and judiciously follow his lead.

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.