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.”
This is an article that touches my heart each time I read it. What a wonderful tribute to both you and your daughter Maia. You are both treasured!
ReplyDeleteThank-you Mary Kay. Without your encouragement this blog and post wouldn't exist and quite literally without the AATH I wouldn't be on this awesome path.
DeleteThis is a great story! Your children are so strong and reliant because of all the love and support they are surrounded by. I would love to share your story with my students if I may?
ReplyDeleteThank-you Cathy! I would be honoured if you shared it with your students or anyone else. I think it's a pretty universal experience of parents of exceptional children that we just don't talk about enough. Share away!
DeleteThis is a beautiful story of love, resilience and determination. Your daughter is perfect!. We have a lot to learn.
ReplyDeleteThank you! Our kids are often our best teachers. Please feel free to like my Facebook page if you would like to follow this blog.
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