We were living in Philadelphia with our twin 13-month-old daughters when one night I returned from the store to find my husband holding E, her face blue. Her arms and legs made a slow but steady jerk jerk jerk, only her eyes were closed and when we lifted her lids the pupils darted back and forth. I called 911 while my husband bent over, put his mouth over my daughter’s, and breathed.
But just like a story that I cannot forget, the moment that haunts me is E’s first seizure. I remember the sound of the approaching ambulance screaming down the street, the sight of my husband walking down the hall ramrod straight with our unconscious daughter in his arms.
I ran out in the hall, knocked on our neighbor’s door. Then another. Our other daughter was asleep in her crib. I waited for someone to answer their door, to ask, How can we help?
No one did.
Back in the apartment I walked from room to room balling my hands. There was a bank of walls along the east side of the apartment and I remember straining to see the ambulance as it traveled farther away with E inside. When it moved past Cherry Street, the wail faded, and I placed my hands on the window and cried.
After begging a dog sitter to stay with our other daughter, I rushed to the Children’s Hospital of Philadelphia. It was a Thursday night and the ER was quiet, the floors waxed a glossy sheen. They told me the room E was in and I moved quickly, the rooms clearly marked with numbers. There were seven or eight people surrounding a bed when I walked in. They were not talking. My husband stood at the side and in the middle of a hospital bed on a white starched sheet stretched our daughter. A clear ribbed tube extended from her mouth to a blue bag. Behind her a man in scrubs squeezed the bag every time she needed to take a breath. There were IVs in both arms, another thinner tube fixed beneath her nose, another tube that extended from her mouth hung on the wall behind her. It was magenta colored and later someone joked that when they pumped her stomach they tried to guess what it was she had eaten for dinner. Beets, I would tell them. They’d cut off her undershirt and it lay bunched around her like skin she’d shed.
It’s Mommy, Sweetpea, I said. Mommy’s here. Her blanket looked dingy under the harsh lights. Dirty. It covered the lower half of her body and nodes dotted her chest. What’s going on? I asked no one in particular. What happened? What is that thing in her mouth?
Everyone in the room was so quiet, deliberate, the space no larger than our galley kitchen. Still. Every movement hushed. That’s when my husband put his arm around me and led me out into the hall, a cold place neither here nor there, floors so shiny I could nearly see my reflection in them. I don’t understand, I said.
My daughter’s life—as well as my writing career—could have ended here. “You know we almost lost her,” my husband later said. Status epilepticus, the life-threatening seizure that E initially experienced, carries with it a high rate of mortality and neurologic deficits. If she hadn’t survived that life-threatening seizure, or if it had left her with neurological scars, my responsibilities as her mother might be vastly more complex. Still, her seizures have overshadowed every aspect of my early years as a parent and writer. Writing requires time and focus and as a parent to a child with health issues, I’m often challenged by conflicting needs. Yet dealing with these concerns has also expanded my worldview and transformed the way I approach my work. Writing—working toward a goal and identifying myself outside of my responsibilities as a parent—has become more important than ever.
My daughter has seized in the doctor’s office when they tried to measure her height and during a check-up when a doctor looked inside her ears with an otoscope. She has seized in the hospital, while at the neighborhood park next door, in our kitchen, her bedroom, in the bathroom, on the living room floor in the summer and in the winter while she was fighting a cold. One Mother’s Day, years ago, she went limp in my arms when I lifted her from her high chair.
She’s nine years old now and because her seizures are caused by breath-holding spells the doctors are hesitant to prescribe daily medication. I do however carry with me at all times a syringe pre-filled with medicine that can halt a seizure by relaxing her body. The major side effect of the Diastat is that it also suppresses respiration, making it difficult for E to breathe.
Every application of Diastat has resulted in a trip to the ER.
We have visited the ER many times.
Before my daughters arrived I squandered time. I read books from start to finish whether I felt drawn into the world of the story or not. I worked on short stories that were okay but could easily be put aside to check email or run an errand. I lacked dedication.
Parenthood changed that. So did the seizures.
As a preschooler, when I said goodbye to E she would cry and follow me to the door. No amount of back patting or hugging could calm her. As the red of her face deepened, and we crept closer to another breath-holding spell, the teacher would distract her and I would rush to my car. Once at the library, seated in a carrel, I would keep looking at my phone. Had E seized? Were they trying to reach me at that moment?
Morning was the only time free of such anxieties. I began to set my alarm hours before the rest of my family. I discovered that my ideas are clearest when I work before my day with my daughters (or anyone else) has begun. In the quiet dark of morning I was more focused and wrote only what appealed to me; every minute was precious. Seizures were always a possibility and life remained fragile. Though it had been years since I had published my first book, a collection of short stories, I vowed to keep writing.
The decisions I made at the start of each day were enough to urge me forward.
By taking note of what appeals to my imagination, I’ve learned to work on stories while waiting in line at the grocery store and snapping Legos together to make a ship. I can puzzle through a problem with my current project while folding socks and invoicing a freelance client. And when I get those ideas down, I let go of all expectations. In Bird by Bird Anne Lamott says all writers write “Shitty First Drafts” and has a chapter in her book titled as such. She goes on to say, “I know some very great writers, writers you love who write beautifully and have made a great deal of money and not one of them sits down routinely feeling wildly enthusiastic and confident.”
Throughout the writing of my novel I doubted my project and myself —some days more than others. Being a parent and an artist means embracing uncertainty and its sibling—fear. Elizabeth Gilbert’s thoughts in Big Magic: Creative Living Beyond Fear helped me see fear as something that can actually illuminate a writing project. Gilbert envisions fear and creativity as conjoined twins and makes space for the two to coexist. She even has a welcome speech prepared for any time she embarks on a new project:
Dearest Fear: Creativity and I are about to go on a road trip together. I understand you’ll be joining us, because you always do… There’s plenty of room in this vehicle for all of us, so make yourself at home, but understand this: Creativity and I are the only ones who will be making decisions along the way.
I’ve taken a cue from Gilbert and turned it up a notch—on days when I am most hampered by life’s concerns, I write a list of all my fears and on the opposing side try and refute them. Usually this activity shifts my headspace and allows me to re-center and return to the work at hand.
Just as I cannot know the outcome of the novel I am currently drafting, my daughter’s health also remains uncertain. Her seizures have grown less frequent and when they do happen, they are shorter in duration. Still, I wonder what her future holds. Someday she will drive alone on the highway. Someday she will lean in to kiss a significant other, breath momentarily halted. And someday she will leave us to attempt her own dreams.
Parenting and writing are chock-full of doubts and frustrations, stress and delight, but these challenges can also fuel a writer’s work by reminding us that writing is a choice like any other, and that uncertainty remains part of the process. I could have put my own dream aside and stopped writing on countless occasions—when a printed rejection arrived with one word underlined: NO or when I caught our sitter on FaceTime with a friend while my toddlers were alone in another room. But every time I sit down I face these fears head-on and write through them.
My daughters have complicated my life in useful and important ways. And on the good days, when I think about them as adults, I hope that through my example my daughters are learning that their needs and goals matter and are worth pursuing.
It’s a conviction I can’t imagine any of us living without.
Image Credit: Public Domain Pictures.