I remember growing up and hearing the cliche, “S/he has a face only a mother could love.” I came to understand that this meant some kids were endowed with natural, exterior beauty while others had less-than-desirable looks. Recently I thought about this phrase, and it took on new meaning. As a mother of a daughter with a facial difference, I realize that I am biased toward her appearance. Sarah’s countenance is one that has been familiar to me since her birth. I know every curvature of her little nose, every trace of her unique fingers. There’s comfort in knowing our children so intimately that, regardless of their visage, we love them.
But this was not always so for me. I regret to admit that, when Sarah was a newborn, it took me several weeks – months even – before I came to see her as my daughter. Every time I held her, I was frightened, because I didn’t fully understand what this Apert Syndrome was all about. Her severe facial features always made me uncomfortable, mainly because I was afraid of facing the inevitable surgeries and struggles. I didn’t know what the fight for her life would look like, and I had no way of seeing her three, ten, or fifteen years down the road.
Over time, it didn’t matter that she had severe baby acne and horrific cradle cap. I stopped caring about people’s reactions when they saw her mitten hands not yet separated by surgery. The more I held her, the more I got to know her – the more she became familiar to me. I learned quickly that we only fear what we don’t understand.
I know that people with Apert Syndrome exhibit similar facial features that define the condition, but they are not defined because of Apert Syndrome. Identities are those inherent qualities that comprise our personhood, which has little to do with exterior characteristics and more to do with interior character.
Now I wonder, What is it about kids with Apert Syndrome that melts my heart? I see each of them in my Facebook feed, some post-op, some just hanging out in their daily lives, and I am drawn to them now. The vulnerability I feel when my eyes gaze at their button noses, big and beautiful eyes, and adorable smiles is overwhelming. It draws up a love I have never in my life understood until Sarah entered it. This love is expansive. It is unconditional. It is authentic. It is real.
This love is drawn to the hidden beauty of Apert Syndrome.
The world sees “a face only a mother could love,” but I have come to love every single face of these kiddos, not just Sarah’s. Somehow, over the course of three years, my heart has significantly changed my perspective on what is and isn’t beautiful, what matters and what doesn’t, and how to truly understand the depth of a person’s dignity.
I have come to see with the eyes of my heart now.
Those harsh facial features that make people gape and gasp are now endearing to me. When I see a newborn child with Apert Syndrome, I am taken back to those early days of Sarah’s life – when her hands were unscathed by surgery and her innocence penetrated the core of my being. That’s what I love about everyone I’ve encountered and come to know who were born with Apert Syndrome – they are refreshing representations of the depth of integrity for which I long. I am now drawn to them, because I see beyond their eyes, mouths, and hands.
I am drawn to their ability to love.
Maybe some people will always see others as “ugly” or “reprehensible,” but I don’t. I don’t believe in the old adage, “a face only a mother could love” anymore, because it’s false. Every face of every person reveals the window of their soul, and that’s what I am looking for – more than the perfectly plastic faces that are carbon-copied on billboards and in magazines. I am looking for substance, and they have it. They are real people with a genuine desire to learn and love, and that’s what I see in them –
Text Copyright 2016 Jeannie Ewing, all rights reserved.
Image Copyright 2015 Lil G Photography, used with permission and edited in Canva by Jeannie Ewing.