Beautiful Differences

“Why's your face look so funny?  It scares me.  Get away.”  That was the voice of one of the kindergarteners in the hallway as I walked to the class I currently observe and teach.  I'm 21 years old and it still stings the same as it did when I was 4, entering into my own kindergarten class.
        I was born on December 1st, 1985 with a bilateral cleft lip and palate.  I have spent the majority of my life trying to blend in.  I never wanted to be noticed for being different.  Countless nights of my childhood were spent praying that I could look the same as the other kids in my class.  In elementary school I was very lucky that the teasing was kept to a minimum. I gave yearly presentations on clefts and brought in baby pictures.  I've discovered that if children understand why differences exist, they're more likely to be tolerant. I remember a story from when I was in 6 th grade. A girl from another classroom was making fun of my lip. Andrew, a boy I went to elementary school with said, “Hey stop it.  It's not like it's her fault.”  I have never been more appreciative of anyone.  He knew about my cleft because of the teaching I had done when I was younger.   It's good to know that there are wonderful people out there and that some of the kids, even in grade school were able to understand me. For the most part though, despite occasional teasing, I was a happy, normal child. I just happened to have surgeries punctuating the years in which I grew up.
        I despised those surgeries and hospitals.  I hated the doctors; hated the way that they didn't look at me when they discussed my “condition.”  Hated the way they touched my nose, prodded in my mouth, and pulled at my cheeks, all as if I wasn't human.  I spent the months before my surgeries dreading them.  To this day, I can give you the exact date on which my surgeries occurred because in those months it was all that filled my head.  The medical staff always gave me a tour of the hospital in order to prepare me for my stay, they loaded up a goody bag with rubber gloves and medical face masks as if that made it all better.
        “We look forward to seeing you in three weeks Ashley!” The smiling brunette receptionist made me sick to my stomach.  I glowered at her and clenched my fist around the handle of my goody bag.  “Just sign right here.”  She pointed to an “x” and my mom leaned over the paper, gripping a black pen.  I wanted to scream.  I wanted to yell at my mom, “if you love me so much the way I am, then why are you making me do this? I'm fine!!”  But instead, I stood quietly, scowling at the receptionist and the two year olds playing happily in the waiting room with Legos, who had no idea what was coming to them.
        Unfortunately, as hard as I tried, I could never stop time.  When surgery rolled around, as it always did, my parents sat with me in the waiting room.  I only remember the feel of my mom's heartbeat on my cheek. I would sit curled up in her lap, wetting her shirt with my tears.  My dad sat next to us occasionally rubbing my leg.  Except for the glances he stole every once in awhile, his eyes stayed focused on the hand held electronic black jack game we always brought with us.  My father is an incredibly sensitive man and I knew he thought he had to stay strong for me.  His energy was poured into that game because if it weren't, he would have cried with me.  We seem to share a heart, and deep down I knew he was in as much pain as I was.  I soon would fall into a drug induced sleep hearing only the soothing sounds of my mother's breath, an electronic shuffling of cards, and a man's soft voice saying “place your bets.”
        My life has been blessed with an amazing family.  They have always been by my side, and although recovery was never fun, it was manageable because of all of the love that surrounded me.  There were times when I couldn't eat for several weeks after surgery and my mom always made the best peanut butter chocolate milkshakes.  I am forever indebted to them.  I couldn't have asked for a better group of people to share my life with.
        I am much older now.  I suppose I'm almost grown.  However, it wasn't until recently that I started embracing what makes me different.  When I was 8 or 9, my parents began to receive the Wide Smiles magazine.  Their website had also just gotten up and running.  I refused to look at any of it.  I didn't want to see pictures of other children like me.  I didn't want to read books about people who had gone through similar experiences.  I was normal, and that was all there was to it.  A few years ago, I snuck a peak at the Wide Smiles website.  That first time I cried.  It was incredible to see just how many families are affected by this condition.  I loved seeing the pictures of the babies with clefts.  They were all so beautiful.  They were all so much like me.
        On my quest for information, I also decided to ask my parents questions that I was too afraid to pose before. I asked them what their first thoughts were upon seeing me.  I was always terrified that they were repulsed by me.  My parents like many others, had no idea that I had a cleft until I was born.  I didn't want to hear them say that they didn't want me, but I also wanted to hear the truth.  When I finally got up the courage to ask, my mom said, “Well first, we thought that you had the most beautiful eyes that we had ever seen,” she smiled, and her eyes got a little bit misty.  “We were a little bit concerned that there might be something cognitively wrong.  We had no idea what a cleft was, or anything that might go along with it.”  When they got over the initial shock, my dad went on to tell me that my mom took on a “my baby and me against the world” attitude.  She took me and my un-repaired cleft everywhere and glared at anyone who looked at me funny.  “Finally, when it came time for your lip repair surgery,” my mom continued, “we were actually sad that you were having it.  We had fallen in love with your face and it hurt us to think that we were going to be responsible for changing it.”  As much as I kicked and screamed about my surgeries when I was younger, I look back and am grateful for everything that doctors and medicine are able to do.  I am a very healthy girl with a wonderfully normal life.  I am in my last year at Michigan State University, studying Deaf Education.  I have amazing friends and a loving family.  I have recently wanted to become involved in helping cleft affected families.  I want to be able to show people that your child can have a cleft and still end up with a beautiful and fulfilling life.
        As for the young children who still stare at me, for the ones who say mean things, I have learned to take it all with a grain of salt.  It is their lack of knowledge and understanding that causes them to fixate their eyes on my lip or make hurtful comments.  I just smile and try to explain to them as best I can that I was just born a little bit differently.  Just like kids have different colored hair, I happen to have a differently shaped lip.  It's not anybody's fault, it just happens sometimes.  They usually nod and smile and go back to playing.  It does still sting when their remarks are brutal, but I also welcome the opportunities to educate people about what makes me unique.  My cleft has made me who I am today, and I think it is important that everyone knows and understands about one of the most influential parts of my life.  To be honest, sometimes I am still embarrassed about how I look.  Some days are worse than others.  For the most part, however, I'm happy to be who I am.  I try to live my life to the fullest, and right now, I love every minute of it.

*Ashley Barbour is a volunteer Angel, and can be emailed at: barbour7@msu.edu