Wednesday, 18 December 2013
WE ARE ALL THE SAME
We are sitting at the dining room table, recapping our days over steaming bowls of linguine. My youngest starts telling me about how some kids at school were making fun of her older sister in the schoolyard. My 9 year old daughter was born with a rare genetic syndrome that results in skeletal and craniofacial anomalies, as well as a hearing and intellectual impairment. She is short and stout and wears hearing aids. She also sports a wild mane of curly locks that I desperately attempt to tame into some semblance of a ponytail each morning. Every day by noon her frizzy curls have sprung themselves free and frame her face like the light wisps of a seeding dandelion waiting for a sticky-handed toddler to pluck and blow into the wind. Her wide set eyes, large flat nose and scarred, partially repaired cleft lip only add to the illusion of a precious lion cub. At an outing to the zoo this summer, we were watching the mighty gorilla in his enclosure, trying to explain our ancestry to him when she asked, “So you ‘evolved’ from monkeys, and I ‘evolved’ from lions?” Poor thing received only the non-verbal response of her entire family rushing to snuggle and kiss her delicious cuteness.But not everyone has always been so loving toward her. As a baby, before any of her reconstructive surgeries, I was given a painful window on both the kindness and cruelty of others. Everywhere we went, people would stare, laugh and point at the “weird looking baby”. But I was in love with her and didn’t let it stop us. Years later my close friend confessed that mine had been the first baby with a cleft lip that she had ever seen and we both sat in sad silence as we realized how many other mothers must simply keep their baby’s hidden to protect them from the stares of others.
Her first Christmas, I sat in a corner of my sister-in-law’s kitchen with my two-month-old daughter on my lap. Many awkwardly avoided us that evening, but I was happy to be there. I had got dressed up for the first time in months and was thrilled to be out of the house, conversing with adults. After dinner, her eight year old cousin sauntered up to us. He took his time to size her up and finally proclaimed, “She looks like one of those vampire-killing monsters in the movie Blade. You know, with the mouths that open up all weird and sideways? But… like a cute baby one!” I laughed in gratitude of his accurate honesty and pure heart.
There was the weekly trip to the grocery store which inevitably included a long wait at the cash having to listen to the people behind me whisper foolishness as though I were the one with the hearing impairment. Other shoppers would move away, avoiding eye contact in their discomfort. I’d bend over my cart, smile and play with her little toes, my ears flushing red at the pain and rage that would bubble up. But I was determined to protect her from their hurtful words and have her register only my love. Most days I would ignore it. Others, I would accept that I just didn’t have it in me that day. So I would stay home, eat peanut butter on toast and rationalize why I could easily postpone the groceries for later in the week. And then there was the occasional day, when all the deep breathing in the world wasn’t enough, so I would pull her out of the shopping cart, abandon it half full in the centre aisle, and walk out of the store to let the tears wash over me in the privacy of my car.
But as she grew, so did my resilience. In the park when other children would make fun of her I felt no shame, marching across the sandbox in front of their impotent parents to explain why she looked the way she did and how it wasn’t nice to speak to others that way. Or when some bold stranger on the street would blurt out “Oh my God!” at the sight of her wearing arm splints, an orthotic helmet and rows of stitches on her face, I would laugh and say “You should see the other baby!”Through all these moments, I have always known that others’ reactions said little about my darling girl or me, but volumes about who they were as human beings. And so I smile from the depth of my soul when I think of the older woman in the pharmacy who stopped to tell me how beautiful my baby was. She had a grandson with special needs and saw right through to my daughter’s perfect little spirit. Or the man in the grocery store who saw me struggling to rearrange the produce in my cart like some housewives' version of Tetris, and came over to share how he was a retired nurse and was so happy to see how well my little one was doing. Or my niece, who rushed into the hospital nursery before I could properly warn her, saw my odd-looking scrawny newborn in the incubator and exclaimed, “She’s perfect!”
I have taught my daughter that sometimes when people don’t understand something they can be frightened or not know how to react or what to say. That sometimes people will say things just to fit in, because they don’t have the confidence to stand up to others and do the right thing. That sometimes, sadly, there are people who are just not very nice. But that what matters most is how she acts and reacts. That she should stand up for herself. Tell others how it makes her feel when they tease her. Spend time with friends that make her feel happy, and that she should always treat others with kindness because that is all that really matters.
Dinner is almost over. The little one is still ranting about the day at school. “Mommy, they were saying all kinds of things about her face and her nose,” she can barely contain her sense of injustice, “They weren’t being nice!”
Her older sister is barely perturbed. She is enjoying her pasta but eventually stops for a sip of water. “They are like that because I’m different.” She says matter-of-factly.
Minutes pass as she scrapes her bowl clean. How did I create such a bold and beautiful child? She finally comes up for air to add,
"But really... we are all the same.”