The Spot.

How do we keep fighting for our kids?

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A Note // I was asked the question ‘How do we keep fighting for our kids’ from another parent to a child with a disability. She was tired, and recent world events left her feeling helpless and alone. I certainly don’t have all the answers, but I do have this story of a story. It’s helped me realize what advocacy can be when frustrations are high and fire is low. So, I’m sharing it with all of you today. My hope is, you find your spot.

Image of a little girl with long blonde hair, holding a pink smoothie and wearing a grey knit vest over a light blue long sleeve shirt and blue jeans. She is bent over, smiling at the camera, and she has Down syndrome.

It’s 2:45 p.m. on a Tuesday, and I’m buckling my baby into her car seat. It’s raining, and I’ve wrapped her in a warm jacket and boots. My hair is soaked from the downpour as I toss the diaper bag into the back seat and circle around to the driver’s side to climb in. My hands are stuffed with a coffee cup, keys, and the library book my six-year-old forgot to return this week.

I drive ten minutes down the road to where my three oldest kids go to school; the long cream building with colourful painted fish swimming along the fence is a beacon of happiness. All three of them love it here. All three of them belong. I park and step out into the rain again, pulling the stroller out and snapping its hinges into place. I place my baby into its fabric cocoon, pulling the rain cover tight to keep her warm, then click off the break and start moving. Every Monday to Friday, this is our routine: walking towards the doors where my kids exit the school, the place where my daughter walks out the big double doors to meet me. Five days a week, I walk towards this spot, the place where we change minds, forever.

First, my six-year-old bounces out the doors, running the ten feet towards me in a flurry of excitement. He throws his backpack at me while talking about lunchtime and squealing at his baby sister. He always comes out first. My daughter, who has Down syndrome, takes longer to walk down the long hallway to meet us, and her twin brother chooses to skip pick-up altogether and go straight to the basketball court, where I find him each day after we’ve changed the hearts of those around us. It’s still raining, and my six-year-old has started losing patience with waiting and is now pushing the stroller toward the basketball court before my daughter gets to the doorway. I know he will go look for his older brother, so I stand here alone, waiting for her to reach our spot.

When I see her, I can’t help but smile. There are no words to describe the feeling of sunshine while standing in the rain, but it washes over me in a glow when she's within sight. I hear her heavy feet stomp toward the door, and there are about four seconds between when I see her and when she locates me among the other parents. I drop to my knees in those seconds so her eyesight aligns with mine. Today, the ground is soaked in water, and I can feel the other parents looking at me with my jeans planted on wet cement. Perhaps they wouldn’t do this - welcome everything - including rain-soaked pants. When she sees me, it’s like lightning: sharp and bright, sudden and once in a million. She always runs, just like I always kneel, and when she gets to me, I can feel the exhale of parents standing near me, the gush of air that comes with being breathless, swept away, in awe of something.

She hugs me for a long time, much longer than other nine-year-olds hug their moms, and when we pull back from each other, she looks deep into my eyes and shows me the pearl flecks of her own, floating against an ocean blue. She smiles, and so do I; our little universe of two minutes is almost over, but I never stand up until she lets me go. I will always be the one to stay longer if she wants me to. I say thank you to the lovely woman who supports her at school - she carries my daughter’s bag so we can greet each other like this each afternoon. I think she knows what we are doing in this spot each day. She is one of the lucky ones who spend hours with my daughter at school, and I think she holds my daughter’s bag because she knows how significant this shift can be.

In this little spot, each day, Kenzie and I get to tell a different story.

When Kenzie was four years old, I would pick her and her twin brother, Wally, up from daycare and speak louder than everyone else. I would ask the twins questions about their day, knowing Kenzie would only answer with sounds while Wally answered with words, knowing the other parents in the room needed to be shown that including Kenzie was simple, and we never required her to fit into that inclusion in a specific way. I could always feel eyes on me. Bent over, changing their shoes from indoor runners to rain boots, I would talk loudly to counter what I assumed the other parents were thinking. I assumed they were thinking things I wouldn’t like, things that weren’t true.

In a world where some people are regarded as less, or unwanted, it can feel like a lifelong battle to fight for rights and recognition. In only nine short years, I have had to fight for my daughter to be seen, valued, and included for exactly who she is instead of who a room is willing to include her as. It’s an important distinction, and fighting for that has broken my heart and cracked me to my knees more times than I want to admit. I don’t want to admit that the world’s default setting is exclusion. I don’t want to shout and demand that people see what is so clearly right in front of them.

When the twins started Kindergarten, I was wildly aware of the widening developmental gap between Kenzie and her brother; starting school became a sharp reminder that the gap was also present between Kenzie and her peers. I saw parents looking at my daughter as she was helped to put her backpack on a hook, helped to change her shoes and helped to transition to circle time or recess. To counter what I believed they were all thinking, I talked loudly, declaring both my kid’s victories in a booming voice, saying, ‘Look at your drawing!’ and ‘Look what you made! You’re so clever!’ I would hug my daughter tight and think silently, ‘Don’t feel sorry for us. Don’t assume this life is hard.’

These ideas I believed were being thought, and my booming voice that countered them, all grew out of the first story I was ever told. A geneticist who believed sincerely in every word she was saying, sat across from me and my swollen belly, declaring all the things my daughter would never do. She told me a story of how my daughter would acheive less than everyone else, and because it was the first story I had ever heard about Down syndrome, for a while, it was the story I believed.

Kenzie is now in grade four, and I have the luxury of time and forgiveness. As the years pass, I have not forgiven the person who told me my daughter’s life wouldn’t be wanted, but I have forgiven myself for grieving a story that wasn’t true. I no longer talk loudly at pick-up, play dates, or at the park as she navigates play structures and social cues with new kids. I no longer narrate what I believe the world should know my daughter’s life to be.

My jeans are wet, and my hair is wet, and when she reaches the spot where I am kneeling we get two minutes to tell a different story. When her eyes find me, she throws her arms out wide. Sometimes, she runs, but always she pushes through the crowd of kids in a straight line towards me, like I am the last chapter she needs every day. She kisses my face; she buries her cheek into my neck, she laughs and whispers a sound, her way of saying hello. Sometimes, I pick her up and twirl; sometimes, I cover her face in kisses. Always, I feel the other parents watching us. Our routine of affection is well-oiled, and I welcome the stares on my back because I know what they are thinking.

Truth and understanding have graced me with a change of heart, shifting me away from shouting and leaning freely into showing. This is what my daughter has taught me: advocacy is forever when your child exists in the most marginalized community of disability, but forever advocacy will harden your skin and weary your soul if it’s constantly the kind that requires brute force.

A soft heart has taught me that not everyone can absorb a message that is loud and sharp. Sometimes, the quiet sharing of a story leaks under the lip of a closed door - shifting thoughts toward the truth before anyone notices the door is finally open.

Kenzie and I have been sharing a story with a group of watchers for months, even years now. We are offering parents a better first than I was given.

By the time I’m standing and hoisting my daughter’s backpack over my shoulder, I can feel the eyes of parents softly watching us walk away. They are wishing for what we have. One more hug, one more kiss from their own child in front of friends. They are understanding that different looks wonderful, wanted and loved. Without any words, Kenzie has softened hearts more than any language I could have used. She is the teller of her own story, and her version is more vibrant than anything I or a doctor could have dreamed up.

How do we keep fighting for our kids? I have shifted my outlook on this throughout the years and landed in a place where my daughter changes more hearts than I ever could. I allow her the space to show up exactly as she is, and I spread my arms wide and catch any opportunities I can, dropping them at her feet for her to navigate in her own unique and meaningful way. I hold doors open and move to the side, allowing her to share a story that I once believed couldn’t be heard the way she told it. And maybe you don’t believe me yet, either. Perhaps this sounds too good to be true, or not good enough. But in time, I hope you find your way to a spot that is like lightning, bright and once in a million. And no matter the weather, you’ll feel how important it is to drop to your knees, letting the rain soak to the soul of you while wrapping your arms around the person you know deserves the world. And the world will watch you tell a different story. Where everyone stands back in awe and thinks, ‘how lucky.’

Thank you for reading.

Xo

Katie