My hair whipped back and forth rhythmically, stray strands tickling the tip of my nose, as she squeed with delight.
“Fresh air!!!! Aahahah! Hahahahahaha!!”
The dark road stretched before us as the individual lines of tree trunk and limb blurred into mottled earthen browns, yellows, and greens; cars whizzed streaks of metallic hues; the world spun around us as we continued windows down, wind rushing in. The sound of rushing air and passing traffic was surpassed only by her delighted squeals. She erupted in spontaneous song; it was an exercise in pure and ecstatic joy. I felt my shoulders slacken and melted into the drivers seat–the hint of a smile crept across my face.
For me, the car is a 2,000 lb torture chamber; it signified everything tortuous, dangerous, and arduous about the day to day managerial parenting of a child with Tuberous Sclerosis Complex(TSC) and accompanying exceptionalities. I used to love to drive–the freedom, the escape, monotony, the sense of adventure–and it was yet another thing that TSC had tainted. Driving was a task, a risk, a means to an appointment, a tense, fast, emergent drive to the hospital, it was an interrupted family outing dashed by another seizure; I drove hands muscles tensed, knuckles white, nerves raw, and adrenaline flooded.
All of this melted away as my body loosened and swayed with the movement of the road; she was happy–ecstatic, in fact–and that was all I ever wished for on the darkest of days was for her to know happiness.
Cars blurred past and Kelly Clarkson wailed on the radio. It was early October and I was driving, belly round and in the way, headed for another glimpse of our growing girl. It was bitingly cold for October, clear and beautifully autumnal. We were headed out to start the celebrations for my husband’s best friend’s wedding the next day on the Cape. The world was hopeful and full of beginnings.
I undressed and lay on the cold table of the ultrasound suite drinking in the floating images of our little girl preforming her water ballet. We fought over middle names and barely noticed the solemnity that fell over the face of the sonographer. She became quiet and was concentrating taking picture after picture, measurement after measurement. She invited me to sit up and I did so smilingly; she informed me that there was something wrong with our baby’s heart and brain and that she needed to immediately call the maternal-fetal medicine specialists in, specifically the cardiologist. I was instantly furious; I couldn’t process; she was wrong and how dare she say without certainty that my baby girl had multiple tumors in her heart and some brain abnormalities.
The minutes stretched on for hours. My husband magically put himself aside to calm me until the specialist came. I again had to submit to for more images of the sweet child swimming around innocently inside. Then came a march of medical students to view the “abnormal fetus” and word after word levied like blow upon blow of mortally wounding weapon; they were giving her a death sentence. These m*therf*ckers in their white coats with their fancy degrees were talking about my child–our child–who was dancing around on the screen–lit up like stars in the sky, already the apple of our eyes– calling her a fetus and talking about fetal demise–robbing our cradle–without even knowing our names or looking us in the eyes, offering what they equated to a death sentence and they sent me home with a diagnosis that these m*therf*ckers didn’t even pronounce correctly–tubular sclerosis.
I just wanted her to live.
Beyond that, I just wanted her to know happiness.
I sobbed and sobbed and sobbed until I had no breath left in me. Then snow fell from the sky. Snow in early October. I thought it was a very cold day in Hell indeed.
The elevator catapulted me back up to the 17th floor. My shirt flew up and ballooned ever so slightly at the bottom as we went up–it reminded me of the wind blowing in the car window. The doors opened to the aquarium-esque elevator lobby outside the locked doors to the children’s unit; it filled me with dread and a macabre sense of joy simultaneously. Ellison 17 is a little slice of home–we’ve slept here, cried here, rejoiced, played with both our babes, railed against God and the cruelty of the Universe. I was buzzed in and ran back down to our room. She smiled chubby cheeks pushed in even more by the enormity of the gauze-wrapping turban that kept the EEG leads in place on her head.
“Mama! I made a duct tape purse with Hole in the Wall!”
“It’s so pretty, baby! Look what I found,” and I pulled a huge stuffed Darth Vader I got on Target clearance from my back pack.
Her eyes lit up and she clambered to grab the villain. I snuggled in next to her in the hospital bed, barely aware of the small computer on her back that was hooked into the wall by a wire, or the camera lauding over us like the Eye of Mordor recording every small quirk in movement to correlate it with the computer recording her brain waves.
“You want to play Dr. Panda on your tablet together or with your Ryan’s World figures?”
She snuggled in tighter. “Make a magnet house for Ryan.” She smiled, as best she could, ear to ear.
This was our normal.
Nine years past the coldest October day my soul has ever experienced and I still think of it often. What I think of more are the resounding giggles that rise from what seems like the base of her very being and erupt out her mouth like a joyous bubbling fountain when the air rushes in and whips across her face.
On that day 9 years ago, I just wanted her to live, my only other wish was for her to be happy. It has been my wish every time Tuberous Sclerosis Complex has tried to take her from us and every time this world and her body challenges her: let her live and let her live happily. Because, from my mind’s eye it seemed impossible to live happily with a body attacking itself with tumors and errant electrical discharges that overcome one’s brain and cause one’s body to go haywire, and with life threatening emergency after life threatening emergency. This is why I drive white knuckled and shoulders tight and walk around raccoon eyed on the daily.
And, she is a fount of ceaseless joy for me. I am reminded again, and again, by her that the purest of things–the sweetest, most exuberant emotions–can spring from the simplest, most unexpected places if only you let the window down a bit and give the breeze an opportunity to blow across your path.