The art of biting my tongue

I was sitting up in bed the other night reading my copy of the journal, The Lifted Brow. I was reading it at a ridiculous hour of the night because I often stay up much later than I should. My cue to go to sleep is often the rustle and clamour that comes from the room next to mine as Wade wakes up around midnight or 1.00am for a drink. Usually, I put my reading away, let him climb into bed with me and fall asleep together.

Yes, I’m a push-over and no, I don’t care.

I challenge anyone to say ‘No’ to this little man who—despite being half asleep—manages to have a drink, put on his glasses and come searching for a cuddle. Sometimes he is wearing a clown hat or 35 men’s ties from the dress up box for the win. My favourite part is that he grins at me cheekily with eyes half-closed as he shuffles up onto my bed and under the covers—knowing that he has me hook, line and sinker.

If I am particularly engrossed and don’t want to stop reading, he will prop himself up against me and snuggle in as I sit up for a little bit longer. He usually goes straight back to sleep curled up under my arm with his head resting on my chest. I listen to his breath moving in and out knowing that I’m in the company of one of the most contented humans on the planet.

This particular night though, he was fascinated with the journal I was reading.

“What the words mean, mummy?” he asks me.

He is becoming interested in words on paper. He has known the alphabet and numbers for some time but was not interested in putting them all together until he started recognising his name. Then a light went on. Words! It’s still taking a bit of time, but gradually more and more words are making sense to him.

“It’s a story.”

“What the story?”

Here we go…the Bermuda Triangle of ‘What?’ questions that I can never sufficiently answer. Most kids ask ‘Why?’ but he asks ‘What?’ My willingness to launch endless answers at endless questions varies but is usually at an all-time low at 1 o’clock in the morning!

After being politely brushed off, he started flicking back through the pages of the journal while I was trying to read it. He landed on this page. An artwork by Grace Rosario Perkins.



I love art. I love the way it makes me feel but frankly I’m a bit of a heathen when it comes down to it. I rarely research art history or seek a deeper knowledge of the pieces I am confronted with. I just superficially engage with it. I like art of all types. I’m not averse to abstract, conceptual or minimalist styles. I am comfortable with mixed media, heavily politicised pieces or ironically inane pieces as long as something speaks to me. It might be simply aesthetic; it might be the concept behind the work; or the skill level involved, but at the end of the day…I either like it or I don’t.

Now, no offence to the artist of this particular piece, but when I came across it in the journal earlier, it left me cold. Nothing about this piece spoke to me in any way. Wade however had a completely different reaction. He couldn’t take his eyes off it.

“What that mummy?”

“It’s an art piece, do you like it?”

He stared at it for the longest time and I decided to just wait and see what happened instead of asking more questions or talking about it further. Then, using his hands, he pretended to lift each segment off the page and place them on the bedcovers next to the book. As he picked each one up he turned them over in his hands and admired each segment. Once the page was ‘cleared’ he picked up a ‘paintbrush’ and began using the page as a palette.

“Pink and orange and yellow.”

He took each colour in isolation and ‘painted’ different sections of the bedclothes. Once he had finished, he ‘picked up’ each segment and put them back on the page.

“Your turn mummy. You do it.”

So I did.

Of course he told me exactly where to paint and how I was doing it all wrong, but it was wonderful watching him have his own experience of something that came entirely from within him.

“There. Done,” he announced.

“It’s beautiful. Do you like it?”

“I love that.”

Wade’s reaction to the piece made me see Grace’s work in a completely different light. It didn’t move me aesthetically any more than than it did before, but it came alive to me in a different way. I realised he was in a place outside of my echo-chamber, having a unique experience of his own making and choice.

It made me wonder what he saw that I didn’t.

What he knows that I don’t.

When Down syndrome hits the media, as it did this week, it is easy to be consumed by the competing opinions from the world around us. Being a parent is hard for everyone but it gets really hard when your son’s condition makes people feel entitled to an opinion on whether he should exist or not. People who toss their opinions around like seed to the pigeons are often negligent to the fact that some people with Down syndrome read comment threads, and are crushed by the commentary that swirls around their right to exist. People are also blind to the idea that no one can predict what kind of life any person will have before they have drawn their first breath. Yet the commentary suggests that people with Down syndrome, and their parents, need to give some kind of guarantee that they won’t be any trouble if allowed to be born, ie. justify their decision to continue with the pregnancy.

Fielding opinions about Wade makes me feel like I have a horse tied to each of my limbs.

One for the opinions over where he should be educated.

One for the opinions on how he could be ‘improved’ by endless therapies and supplements.

One for people who think he is an angel sent from heaven on a rainbow chariot drawn by unicorns on a mission to inspire us all to be better people.

And one for the people who think he is a burdensome abnormality who should never have been born.

…and if I make a sound, those horses will charge and tear me to pieces.

In the middle of the freely thrown comments, whether they are attacking people with Down syndrome or supporting them, it’s easy for the unique humanity of a person to get lost.

And so it was during this unique moment of peace in the wee hours of the morning that I saw something wonderful and listened to the only person who mattered. The little guy who has been quietly speaking to me from the moment I knew he was there. Whose voice has always made sense in the raging sea of competing opinions.

This perfectly made little man who sees the world in a different way to me. Who finds beauty where I don’t or calls bullshit on my passions.

Art makes us see the world from different perspectives. It can take a simple object and represent it in a million different forms and formats. A painting of a bowl of fruit can stir deep passions or a couple of pieces of fabric and a bunch of fans can make you weep. Art can force you to stand in front of things you don’t like or understand and compel you to at least consider it before moving on.

It’s a lot like the gallery of human diversity we all walk through everyday. And maybe if we closed our mouths, opened our eyes and waited a little bit longer before rushing forth with our opinions, we might find something wonderful and surprising that we didn’t know was there.


6 thoughts on “The art of biting my tongue

  1. Leticia that was so beautiful. After feeling so overwhelmed with everything I’ve read online this week, your piece has restored my faith in myself.
    Thank you.

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