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. It doesn’t matter what our exterior shows the world, but rather, what matters most is what is in our hearts.
At the doctor’s office, I was waiting to be called into yet another exam room – this time for me. 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, about Felicity’s age, immediately introduced herself to Lissie and asked if she might want to play. Lissie, being shy, needed some coaxing, but she did eventually engage in some passive play with the girl (whose name was Emma).
Emma then looked down at Sarah, who was gleefully scooting on the floor towards the other two girls. Remember, 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.” I handed a card with information on Apert Syndrome to the mom, and told the little girl that Sarah was born with a rare condition that made her face look the way it did.
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, the thought came to my mind, a funny face is a beautiful face. I thought it to be an appropriate title, because 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. God, in His infinite wisdom, knew what He was doing when He molded and fashioned Sarah and all of her distinct characteristics.
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 bugged out? 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.
We all have them, don’t we? Why do we all stop or take a second look when we see someone who is noticeably, visibly different from the mainstream populous? Why do we shoo our kids away from them or act embarrassed and nervous when our children stare? I find it all too trivial in the grand scheme of things. In fact, I find it appalling at times.
Instead, every family in this world can begin to change these bizarre and skewed perceptions of what it means to be a perfect human being, what it means to look and act perfectly in our culture and society. I propose the following two ways: Firstly, we teach our children in the privacy of our homes to never be afraid to ask us questions about people’s differences, as long as they do so privately. We also introduce our children to other kids and families who don’t look like ours do; as parents, we have a responsibility to end the madness of segregation, prejudice, and the -isms of our world. We can do this by treating all people with equal dignity – making eye contact, smiling and saying “hello,” introducing ourselves. We befriend people who aren’t like us. We love them.
Secondly, we start educating ourselves on people’s differences and teach them to our children. We point out the things that are different about us, about our kids, and we remind them that our differences are the gifts we offer to the world. I am thinking of the incredible verse in 1 Corinthians 12:12-26 (One Body, Many Parts):
As a body is one though it has many parts, and all the parts of the body, though many, are one body, so also Christ. For in one Spirit we were all baptized into one body, whether Jews or Greeks, slaves or free persons, and we were all given to drink of one Spirit. Now the body is not a single part, but many. If a foot should say, “Because I am not a hand I do not belong to the body,” it does not for this reason belong any less to the body. Or if an ear should say, “Because I am not an eye I do not belong to the body,” it does not for this reason belong any less to the body. If the whole body were an eye, where would the hearing be? If the whole body were hearing, where would the sense of smell be? But as it is, God placed the parts, each one of them, in the body as he intended. If they were all one part, where would the body be? But as it is, there are many parts, yet one body. The eye cannot say to the hand, “I do not need you,” nor again the head to the feet, “I do not need you.” Indeed, the parts of the body that seem to be weaker are all the more necessary, and those parts of the body that we consider less honorable we surround with greater honor, and our less presentable parts are treated with greater propriety, whereas our more presentable parts do not need this. But God has so constructed the body as to give greater honor to a part that is without it, so that there may be no division in the body, but that the parts may have the same concern for one another. If [one] part suffers, all the parts suffer with it; if one part is honored, all the parts share its joy.
Even if you are not an overly religious person, certainly this metaphor of the body working together as a whole but consisting of several different parts with different functions can serve as a teaching opportunity for our children to understand and embrace other people’s differences. It can also assist them in expressing their own uniqueness rather than hiding the attributes they may feel do not “fit in” with their peers or with societal perceptions of beauty and success.
Consider the magnitude of this message and its power to potentially and fundamentally change the world: If every parent taught his/her children this and modeled it at home instead of pursuing material success or exterior beauty, people would be unafraid and unashamed to be themselves. Children would grow up with self-confidence and empathy. Bullying would no longer be an issue in schools.
Does Sarah have a funny face? Some may think so. But I happen to think her face is beautiful. And so is yours. We are all cherished and treasured in God’s eyes. Let’s see other people through His lens rather than our jaded and tainted perspective.