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.

Advertisements

4 thoughts on “On Bravery

  1. Man that hit me pretty hard. At first I was thinking about all the birthday parties my mom did for me. Then it got serious. Is this a true story? If so you’re a very strong and resilient person.

    Here’s to making it through September 🙂

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.