My mother and I were leaning over her bed folding laundry. I was 12 years old. As we worked, Mom reminisced about my birth — how she’d carried me home from the hospital in a fluffy pink bunting and how my grandma had been so excited she’d quit smoking, cold turkey. Mom smiled as she described the birth announcements she and my dad mailed proclaiming the arrival of a “fine daughter.”
That was code, so everyone would know I hadn’t inherited the same disease as my brother, Danny — a rare and incurable disease called Familial Dysautonomia that prevented his nervous system from developing and functioning normally.
I couldn’t fathom the gamble our parents took when they decided to have me. My brother was smart and funny and patient, and even though I tried, I couldn’t imagine our family without him. There were only 300 known cases of Familial Dysautonomia, and the average life expectancy was just 5 years old. Those statistics were never discussed in our household, but our parents struggled mightily to beat those odds. It wasn’t easy. Coping with Danny’s frequent lung infections, orthopedic problems, vision problems, digestive problems and more amounted to more than a full-time job. How would Mom and Dad have managed a second child with FD?
I knew it was no small risk. In science class, Ms. Nelson had taught us about Mendel’s experiments with pea plants. We’d learned about dominant traits and recessive traits and how to use Punnett squares to chart the probability of an offspring inheriting curly hair, blue eyes or the ability to flip one’s tongue. For me, the lesson’s existential implications were clear. Working backward, Danny’s FD meant both our otherwise healthy parents were carriers which meant odds were 1 in 4 that any baby they conceived would have the disease.
So when my mother brought up the carefully-worded birth announcement, I ventured to ask, “Weren’t you worried when you were pregnant with me?” I tried to sound casual, keeping my eyes on the socks I was sorting.
My mother tossed aside my question like another folded towel. “Oh, I knew you’d be fine.” The way she said it, the decision to have me had been the easiest one in the world.
For me, the decision to have a child wasn’t easy at all. I weighed the impact parenthood would have on my career, my marriage, my body. In contrast to my mother whose willingness to spin the genetic roulette wheel with me I attributed to an unequivocal maternal urge, I figured my ambivalence meant I might not be cut out for the job.
I was fortunate in that by the time I became pregnant, the gene for the disease that had by then killed my brother had been identified and a carrier test made available. The test confirmed that I’m a carrier — as are one in 27 people of Eastern European Jewish extraction. It came as a shock to realize just how close I’d come to inheriting Familial Dysautonomia. But my husband, with his Catholic mother of Northern European stock, tested negative, freeing me from the worry that our daughter might inherit it.
I remember the moments just after her birth when my obstetrician placed her on my stomach. Her blue eyes were open wide, making her appear curious. Her sparse, extremely blonde eyelashes added to this impression. “Hello Baby. Hello Jacqueline Simone,” I thought as she wormed her way up my torso, instinctively seeking my breast.
She’s 12 now, and I’m constantly astounded by her physical perfection. It shines around her like a golden light when I watch her kick a soccer ball, climb a rope, do a handstand, dance en pointe. I don’t fail to notice that all the major systems of her body function they way they’re supposed to. Like the time she was an infant, and some milk went down the wrong way while she was nursing. She coughed. I saw that gag reflex keep her lungs clear of milk, and I knew I was witnessing a miracle.
A few times each winter, she catches a cold. A day in bed and some chicken soup, and she’s good as new. The biggest medical emergency I’ve faced with her was the time she broke her toe during her gymnastics class. Imagining myself in my mother’s shoes, with a child with a devastating illness, I’m constantly grateful for my daughter’s robust health.
As for my mother, she now concedes her decision to have me wasn’t as easy as she’d made it out to be back when I was 12. “Grandma told me I was nuts. She said I should have an abortion.”
Terminating her pregnancy had been a legally available option when I was conceived thanks to the passage that very year of the nation’s first liberalized abortion year in our home state of Colorado. My mother tells me she and my father weighed the matter, and that ultimately Dad entrusted her with the choice. “Daddy supported me,” Mom says. “Whatever I decided, he was behind me.”
“And you decided to go ahead,” I prompt.
“I decided it was worth the risk. I figured the odds were in my favor.”
Learning of my mother’s leap of faith makes me wonder what ran through her mind in the week morning hours of my birth when Mom realized I was healthy.
Soon as she saw me, Mom says, she knew I didn’t have FD. But the doctors insisted, “Oh, we’ve got to run tests before we can be sure.”
Mom was annoyed. She didn’t need their tests. She’d seen me trying to suck the fingers of the nurse who cleaned and swaddled me. My voracious pucker was a dead giveaway — the suck and swallow reflex was something my brother had lacked at birth.
But the doctors whisked me away to perform their rudimentary diagnostics — administer a histamine test, scrutinize the papillary of my tongue, draw blood, appraise my urine.
After they’d gone, my mother remembers standing at the window in her hospital room, the feeling of her forehead pressed against the glass. She remembers she was crying.
“Why were you crying?” I ask. I know the reason, I just want to hear her say it.
“Relief,” my mother replies. “It was relief.”
Mara Marks is working on a collection of memoir essays. Other stories from the collection have appeared in Alimentum, BioStories, The Hairpin, Mothers Always Write, Pentimento and elsewhere. She enjoys her loving family, supportive friends and those little sample cups at the frozen yogurt shop. http://maracohenmarks.