Sometimes I forget that Sarah looks different. Actually, I forgot long ago that Sarah didn’t look like a typical baby or toddler. But this week I was reminded – sadly – in an otherwise normal milieu.
When our family is out in public, I often forget that we aren’t a typical American family. Sarah’s condition is not usually on the forefront of my consciousness anymore – not like it was shortly after her birth, that is. At that time, I was in a much different place in my heart. I was often embarrassed or even ashamed, not wanting anyone to notice her visible differences – her mitten hands, her pronounced forehead or buggy eyes. I eventually made peace with these, and today I am unashamed of how Sarah looks. It doesn’t matter to me anymore. Sarah is just Sarah.
Still, I forget that others who do not know Sarah or who have encountered her for the first time might see her the way the world sees people who are different – a stark contrast to the chameleons we see everywhere else, the people who all blend together rather than stand out.
Clearly, Sarah stands out. But instead of perceiving this as negative, I have come to believe this is a gift. It is good that Sarah is noticeably different, because her little life reminds everyone else that we are all people.
At the doctor’s office, I was waiting to be called into yet another exam room. I had both girls with me, and it was an otherwise ordinary day. Another mom and her preschooler walked into the waiting room and sat down. The young girl, Emma, immediately introduced herself to Lissie, my other daughter, and asked if she might want to play. Lissie, being shy, needed some coaxing, but she did eventually engage in some passive play with Emma.
Emma then looked down at Sarah, who was gleefully scooting on the floor toward the other two girls. Sarah isn’t aware yet that she looks different. She thinks she is just like everyone else, and that is how she is treated at home – just like a typical, normal toddler. But Emma, who had just seen Sarah for the first time, gasped and said, “Mommy, that baby has a funny face!”
Her mom, clearly embarrassed, apologized profusely. I quickly brushed it off with a wave of the hand and said, “I understand how young children are. They are just curious, and that doesn’t offend me, believe me.”
Then Emma noticed Sarah’s hands. “Mommy, the baby only has three fingers!” The poor woman looked like she wanted to crawl into a hole. What does one do in this situation? We all know that children do not have social or verbal filters, and they definitely say what they mean. But how do we, as adults and parents, respond in these unforeseen situations?
I smiled. “Yes, she had surgery on her hands to give her fingers.” Emma, of course, didn’t quite grasp all of this, but thankfully her mom asked me for Sarah’s name and then told her daughter, “This is Sarah. Can you say ‘hi’ to her?” Emma did, and suddenly she didn’t treat Sarah as if she were a social pariah anymore.
I think a parent’s response makes all the difference in the world in a circumstance like this. And we all – at some time or another – will find ourselves in these predicaments.
Even though I knew little Emma was so young and had no intentions of being rude, it still hurts my heart as a mama. It hurts, because I know inherently that the world sees Sarah’s craniofacial condition, while I simply see Sarah.
To me, she is just a typical little toddler, and the wonder in her eyes as she says, “Hi!” to passersby both pierces and warms my heart.
It pierces my heart because I see the stares in my periphery, hear the murmurings and whispers when we are in public places, but she does not notice them. She looks at the world through untainted, unblemished lenses, yet the world does not respond to her in like manner.
It warms my heart, however, because I am humbled by her transparency and her innocence, two very striking characteristics in an otherwise sterile society.
After this incident occurred, this thought came to my mind: a funny face is a beautiful face. This is how I see Sarah. I do not see a funny face. I see the face that has become so familiar and so beloved to me and to countless others. I see her unique features, yes, but they become less apparent over time. Her face has become one marked with love and joy, not one that was formed asymmetrically.
When I see Sarah, I see her golden, blonde hair streaming down her neck. Yes, it is wily, but I find it to be beautiful. I notice her big, blue-green eyes and long, curly eyelashes. Are her eyes a bit droopy? I suppose, but I don’t really notice anymore. What I see is the beauty from who Sarah is radiating from within to an external beauty that the average person may not view. But I do. I see Sarah’s sweet smile and her button nose. Is her nose small and the bridge a bit scrunched in? Yes, but I don’t care. Is her mouth a bit small, and her teeth crooked? Is her speech slightly slurred? Of course, but it no longer matters to me.
None of this matters to me anymore. I have given up the fight of trying to fit our family into a societal mold that, in actuality, probably doesn’t exist anyway. It exhausts me to be constantly vigilant as to how others are reacting or responding to Sarah’s differences. Though initially I dreamed we would be an otherwise normal American family, I have now come to embrace the beauty and gift of each family member’s unique attributes.
A longer version of this post originally appeared on Love Alone Creates.
The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. If you’d like to participate, please send a blog post to firstname.lastname@example.org. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.
Want to help celebrate the human spirit? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.