The First Time Ever I Saw Her Face by Carolyn Walker Author of Every Least Sparrow
By Carolyn Walker| Published on carolynhwalker.com | 2018 | Carolyn Walker is the author of Every Least Sparrow (Garn Press) On sale on Amazon ($12.95) Barnes & Noble, IndieBound, Waterstones, Books-A-Million, Indigo Books. EBook on Amazon | Syndication made possible through Patreon.
By Carolyn Walker
I don’t think our pediatrician meant the information he was sharing with me to be a warning. There were problems with my daughter’s development, Dr. O’Neill said, among them lip pits and a beak nose.
But warned was how I felt. I hadn’t seen my new daughter yet, and he was in the middle of explaining her various deformities to me, trying to get across why he thought she might have Rubinstein-Taybi syndrome (RTS). These were but two of the traits of this rare and little-understood condition that affects both the body and the mind, he said, while I sat on my hospital bed in a daze of confusion.
Subsequently, between 11 PM on the day of her birth, when Dr. O’Neill came to see me, and 8 AM the following morning, I tossed and turned, and sometimes wept, trying to conjure what I had given birth to.
What could lip pits and a beak nose possibly look like? I imagined not a baby’s face, but a dark dungeon with holes in the floor and bars at the door.
A mother should not be afraid to look at her newborn. But I was filled with trepidation as a nurse handed Jennifer over to me, and I peeled the fleece blanket back, exposing her for the first time.
She had been crying – I’d heard her as she was brought down the hall and into my room – but grew quiet when I tucked her against my chest, where she could hear the comforting, familiar heartbeat she’d listened to for nine months. She felt warm, and I recognized that she was a part of me.
I looked at the nurse, and she said, “Go ahead, count her fingers and toes.” She smiled at me, as if she knew that inevitably I’d fall in love, and I obeyed. I pinched the corner of the blanket between my forefinger and thumb and cautiously unveiled my baby, like a woman does when she’s been handed a surprise gift and is suspicious that something will jump out at her as she pulls off the wrapping paper.
I was greeted by a fresh pink face with two dark eyes peering back at me. Above them was a red birthmark. And above that, the yawn of her fontanel pulsing slightly across her hairline, beneath a wave of thick black hair. Jennifer’s nose seemed a bit pronounced, but I didn’t find it worrisome. And the lip pits were nothing more than two tiny polka dots of flesh on her lower lip.
Sometimes over the years, I studied Jennifer’s face to see if, deep down inside, beneath the RTS that informed it, she favored her father or me. Her siblings have their father’s beautiful dark eyes and my full smile, and I thought that had she not been born with RTS, she might also. I thought that if I looked long enough, hard enough, I might see the normal Jennifer who might have been.
Twice in her childhood, I happened quite unexpectedly across two other people with RTS – a young man, twelve-years-old, and a woman in her thirties – their faces were carbon copies of one another, and foreshadowed what Jennifer’s would look like as she grew. I had in those moments the experience of looking into the future. I saw in the boy how my daughter would appear as an adolescent. And I saw in the woman, the Jennifer who would grow old.
Then surprisingly, I one day realized that when I looked at Jennifer, I no longer saw her RTS features. Time and love had made them invisible to me. Looking at her face became akin to looking through a slightly tarnished mirror. I saw only beauty reflected. I saw her quirky smile and shining eyes, her mischief and determination. I saw her innocence and her humanity, and all the noise of deformity that went on around these qualities disappeared.
Back when Jennifer was born in 1977 there was no Internet. And really, given the syndrome’s rarity, I was lucky to see the boy and the woman I encountered so many years ago. Now I have the privilege of meeting other parents and their RTS children in a Facebook group. I think there are about a thousand members, from all over the world. Most of the children are young, and from the parents’ posts, I can see they are endeavoring to come to terms with the ways RTS will affect them.
I have the advantage of having lived through the hardest parts of raising a disabled child. I’ve gotten her through a variety of medical traumas, an education, a job, and into a thriving adult life outside my husband’s and my home. When I want to, I can go on Facebook and work my way through face after face of Rubinstein-Taybi syndrome. I smile every time, thinking about how I could hug each child as if he or she were my own.
What I want to say to the newer parents is this: the day will come when the diagnosis doesn’t matter. You won’t focus on it anymore. It will be old hat. All that will matter is the human being you see before you.
Carolyn Walker is the author of Every Least Sparrow (Garn Press) On sale on Amazon ($12.35) Barnes & Noble, IndieBound, Waterstones, Books-A-Million, Indigo Books. EBook on Amazon | Syndication made possible through Patreon.