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Illustration by Juliana Neufeld
Before my daughter was born, the story of her life with Down syndrome was set. That was how it was phrased to me, her mother, as I sat in a chair listening to the doctor deliver the diagnosis. Her life – the doctor told me – was one that could already be told from beginning to end. I could tell this doctor had told the same rendition again and again, a memorized verse, repeated so many times by medical minds that the story of my daughter’s life had long ago shifted from a tale, toward fact. Even though there was nothing to prove this story was right, even though the person telling my daughter’s story had never lived my daughter’s life, it was constantly echoed by others, and each time, her story became a little more set into stone.
After she arrived, I curled Kenzie into the nook of my arm, marvelling at the wonder in her eyes. I was confused; why would the narration of her future resemble anything but the expanse of possibilities I could see in the curve of her cheek? Why was I being told her life already had a map, when everyone else did not? So, I pulled the blanket back to show the world her promise, but the world roared back with her story of “less.” She would do less, need less, be less. I was told this so many times that I began to fear the repetition had taken hold, and I watched as so many agreed on what they wouldn’t give her – a chance.
In reaction to the never-ending cycle of a story that wasn’t hers, and to counter the fear that our family refused to foster, I fought back with loud words of worth wrapped in sentences of joy and celebration. “Look how wonderful she is!” I shouted. “Look how wrong you have all been!”
The world looked, smiling at her. Many nodded their heads in agreement. She was wonderful. But I watched as the world kept walking by, refusing to change their minds, steadfast in their beliefs that they couldn’t include her – even if they tried. No need, I heard them say, we already know her story. The truth – many believed – was what had always been said.
No matter how loud I was, the truth of my daughter’s story could not be heard.
More years passed and my daughter grew into a clever, vibrant and joyful child. Her laugh was contagious, and she moved through her days with quiet wonder. My daughter didn’t speak, instead choosing to explore and discover with her hands and eyes. I marvelled at the silent beauty she revealed in her path and eventually, I began to tire of all the explaining. How many times could I shout my daughter’s worth, how many times could I list all the ways she was wonderful? And how long could my heart witness the world ignoring her?
My efforts exhausted me. Hundreds and thousands of times, I had to shout that the world’s story of my daughter was not actually my daughter’s story. She won’t amount to much, I had been told, so she was given almost nothing. She can’t play sports, they had said, so no team would welcome her.
Eventually, I needed to rest. Eventually, I couldn’t shout anymore. Eventually, it was time for me to sit back and let my daughter take over.
Many were stunned by her quiet curiosity and they turned, noticing. She led the way differently than I did and when people trusted enough to follow – she took them to the most beautiful places. Vibrant colours surrounded her everywhere and anyone who took the time to notice discovered her world was made of neon light.
I stood to the side and witnessed an incredible thing; the story that I had been trying to rewrite with a loud voice and booming fist, the one that was always lost to the chaos of a perceived belief – was clear and bright as day when left in her hands. My daughter shared her truth with no words at all and for the first time, I understood that her truth would never be explained by me. It could only come from her.
I stepped back and listened and for the first time the world heard a different narrative – one that felt new but had been there all along. My daughter was gracious and kind with each stranger who stopped to learn, allowing more compassion than people had ever shown her. Finally, the old story melted away. I began to understand what I had overlooked, what I had missed the day I met her, eyes wide with wonder – it would be her who changed things. It would be her who crumbled the stone and made a path of gravel to follow. And she was gracious while I learned, too.
My daughter’s story is the truth.
Kenzie is wanted, celebrated and loved. And she will share it with anyone willing to listen.
Katie Jameson lives in Vancouver.