The amount of watering and waiting required for a tomato to turn from green to yellow to red can be measured in the hazy mornings and hot afternoons I spend outside, garden hose in hand, quietly ushering a deeper shade of ripeness. I am attuned to the way sunshine hits every orb hanging from a branch at every part of the day, snipping and clipping leaves away in the hopes of a quicker return on investment. I can count seven branches of ‘zillions,’ still the colour of limes. They do not transform under my watchful eyes.

Inside, my daughter lies on the couch, which is green and will always be green. She is wrapped in a red plaid blanket and stimming to ‘Frozen 2’ for the second time today. We don’t go anywhere or do much, because my daughter just had spine surgery. Actually, two spine surgeries. Ten incisions line her torso, flanking her spine on either side, evidence of science doing miraculous things. For the last month, we have had to coax her outside, coax her into the light, coax her into walking around the block. She moves slowly and lets us know she would rather be stimming to ‘Frozen 2’. When we get back home, I check her bandages for leakage, redness, or swelling. I take her temperature and watch for a fever.

I am tending, tending, tending.

I am waiting, watering, checking.

I am measuring what was before against what I hope will come.

For 18 months before this surgery, I did my best to hold my daughter’s body where it was. I agonized over every degree she curved and twisted, scoliosis slowly bending her at the hips. She wore a back brace every day, confining not only her body but the colours of her mind. She wore it for hours and hours each day. We adjusted it, checked in, strapped it on. Her skin broke down. Wounds appeared. We treated them, healed them, and put the brace back on.

It felt like an eternity as her colours faded.

The tomatoes won’t tell me what would help them grow faster. Like tiny, stubborn toddlers, they move at their own pace. They are quiet and firm, not bothered in the least by the gardener who bends to peer at them several times a day, checking for any change.

My daughter speaks in movement; her language is one of rocking, swaying, touching and waiting. She will tell me a thousand words with just one look, and so a thousand times a day I move close enough to hear her. Every hour, I ask her what hurts, and in return, she touches my cheek, thanking me for paying attention. I circle her like the moon, watching for any sign of change.

People love to say ‘time heals,’ but maybe they have not stood in the hot sun, willing something green to turn red. Maybe they have not stood over their beloved, wondering what hurts and never knowing the answer.

And then yesterday, she stood up straight, and I measured her. Just one month after her two surgeries, she is three inches taller than before. In a month of lying still, she grew. While I was waiting, wondering, tending, her spine straightened upward. It would seem that her body was waiting and tending, too.

Meanwhile, I keep going outside to check the tomatoes. Still green. Maybe it isn’t hot enough? Maybe I haven’t watered enough? Did I not fertilize enough? Should I rotate them again?

I hold no religion, but there is a particular kind of faith required in tending something you cannot hurry. Parenting has taught me that over and over, although as I trim another branch off my tomato plant, it would seem I still need reminding.

Gardening has taught me this: you cannot always see growth while it grows. You can hope for it, and then wait.

You cannot determine change by what is above ground.

Life has felt out of control and desperately slow this summer. I am home with my four kids in the backyard, and we have cancelled all our plans while my daughter heals. I have read books and made cheese sandwiches. I have built forts and filled the little plastic pool a hundred times. I have grown roses, calendula, snapdragons, and straw flowers. I have been bored, and run out of time. I have yelled, cried, laughed and apologized too many times to count. I am split in half, living every day at the equator of gratitude and longing.

I have wanted to start writing again, but really had no idea what to write. Maybe because I have spent most of this summer measuring what was before against what I hoped would come. For over a year, I wanted the change in my daughter’s body to stop, for her spine to cease its twisting, for the brace we strapped against her to hold the pieces together. For over a year, I watched her body shrink. And then, in four weeks, she changed in a way I didn’t know was possible.

Three inches, upwards.

Outside in my garden, I have done my best. I have watered, clipped, rotated, and watched. I have googled videos about smashing seashells, I have mixed manure into dirt. And the tomatoes are still green. I counted hours and minutes against degrees of bone shifting. I explained and apologized every time I put the plastic mould around her body.

I think this is the part I keep forgetting; tending does not give me authority over what happens next. I can water, I can watch, I can move things toward the light, I can pay very close attention. I can hope. But I cannot decide when change will come.

Tomorrow morning, I will coax my daughter, who is taller, into the sunshine. We will go for a walk, stretch out our spines, and grow in ways neither of us can see.

Then, I will go and water my green tomatoes.

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Thanks for reading.

Xo

Katie

It is April, and the daffodils are bursting. Plump and heavy with promise, the petals are glowing in shades of afternoon yellow and sunrise gold. They gather along roadside corners, fill supermarket basins, and spill into vases on windowsills. They arrive each spring, signalling relief after winter’s harshness.

The start of April marks twelve years since my son, Lochlan, was born. The end marks twelve years since he died. These thirty days linger and whirl within my mind, a never-ending cycle of celebration and tragedy. A lump sits in my throat all month—half a breath, never enough air enters before too little escapes. There is never enough time to celebrate his life before we mourn his death. Every April, my aching lungs remember. It is the month I became a mother, yet no mothering could keep him. I sat still as he teetered between life and death, never daring to take in too much air.

With its promise of petals, spring also blooms with painful certainty as a reminder of the time when he was gone, where there was no sign of him anywhere, and I floated in the abyss of never knowing if I could claim the word ‘mother.’

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My son Wally, who is the oldest of my kids, but not truly my oldest, is old enough now to understand how the air bears weight in April. I suppose all my children, here, know that Mom tends to be more tender on many days in the spring. It’s common for her to cry when the tulips bloom or to find herself lost in thought more often, gazing out the dining room window with a task left unfinished in her hands. But Wally has grasped my grief from a different perspective this year. Like a little archaeologist, he’s begun to uncover the layers of my heart.

I stay busy in April. That has always worked well for me, and any grieving heart will agree that moving through your ache is always better than lying beneath it. I find chores, tasks, and crafts help keep me occupied. This year, I poured myself into making cardboard daffodils; cutting, gluing, painting, and fussing. I mixed several shades of orange paint with white to get the center corona just right. But I didn’t like it; it was too bright or too contrasting. I tapped my foot, hummed, and hesitated for at least a day, then decided to start again by mixing a deeper orange with cream-coloured paint. That did the trick—the exact hue I wanted—and I carefully covered the brown cardboard. I thumbed through my craft supplies drawers, carefully searching for the perfect string to hang them. I didn’t want a dull colour or twine—far too utilitarian for such a display of love. At the bottom of a basket, I found an unused roll of thin, green ribbon—so much of it, as if it had been waiting for the perfect task. The holes would need to be small; no hole punch with a gaping space at the top of a petal would do. After wandering the house for a few days, I realized that the small end of a screwdriver would be the perfect size, and I ran to the toolbox under the kitchen counter. Of course, I would need to gently tap the metal part through the paint and cardboard—a tear could happen quickly, and I would need to start again. Hours of careful poking later, my flock of flowers was ready for hanging. A beautiful string of yellow, placed under his framed photo. Like a graveside tribute, cloaked as a craft.

I am always searching for ways to be his mother. No matter how many years pass, I subconsciously find ways to pour myself into the day Lochlan was born, the day he died, and endless days with no milestone marker at all. I yearn to tend to him, to care for his body and his heart. I ache for all the days taken from us both, mornings, bedtimes, breakfast arguments over discarded eggs and toast. I want to watch him ride his bike, kiss someone he loves. I want to hear a best friend say his name. I want to buy him new socks because he has outgrown the ones I just bought. I want to forget that he’s outside playing, because that’s where he always is. I want to walk into a grocery store with him swaddled on my chest, just to pick up some bread, and have a complete stranger stop me to coo at how sweet his round, healthy face is. I want to laugh and agree with this stranger that yes, he is perfect, he is deeply loved, and yes, you can feel how adored he is by being in our orbit.

I want to hold onto that joy with someone.

I have been wearing a small black strap on my wrist for months now, a strange, tiny computer that tracks my steps, strain, and heart rate daily. It’s my attempt to be healthier, to get stronger. To live as long as I can, I suppose, to gather time, collect memories and stories well into my nineties and ask my kids, ‘Remember when…’

For a long string of days in a row, the app on my phone made a small ding, an alert I didn’t understand until I clicked the button to uncover the problem. My resting heart rate was high. Too high. For too many days. The app wanted to know why.

The AI thought it could help.

“Hello Katie, I noticed your heart rate is elevated. It’s more than usual. It’s too high, for too long. Are there any physical or environmental factors you want to talk about?”

I laughed before I screamed, although the scream was much louder. Even the robotic brain on my wrist pressed into the undercurrent of April.

Physical or environmental factors?

“I AM GRIEVING!!” I screamed at the black band on my wrist, begging it to sense more than my heartbeat. Begging it to equate the longing, the breaking, the scattered, noisy quiet to the reason my heart is skipping faster and faster.

I am grieving, I screamed.

I am grieving, I cried.

I am grieving.

Let me grieve.

I am living and loving with my whole, broken heart. I am trying and failing; I am starving and content. I am stretched and full. I am everything all at once. I am driving my son to baseball practise with the music blaring, singing at the top of my lungs, wiping away tears on an ordinary Tuesday. Wally glances at me from the corner of his eye, checking something he could only feel. Perhaps as he digs, he will discover the reason for my ache I have shared each April is the truest of all — I am happy, and I am sad.

I am mothering him. Them. Forever.

A friend came over to pick up her son after a playdate and noticed the string of cardboard daffodils hanging on the mantle. She loved them; she thought they were pretty. Her son and mine were wrestling in the living room, laughing and chasing each other right in front of Lochlan’s framed photo. My friend shook her head and gazed at the painted cardboard edges.

“How do you have the time?” she said, laughing, knowing how busy this life can be.

I find the moments I most want to mother Lochlan are moments like these. When he isn’t in the room for someone to see, his voice isn’t reminding anyone that he was here, that he existed. I want to mother these pauses and awkward silences — moments when the silence is mine to hold, when I choke back a scream, ‘I AM GRIEVING’ to a friend. A moment like this one is when the weight of the air bends downward, heavy under the strain, when others have no idea that Lochlan takes up the most space in the room, and I’m waiting for the joy of him to become something I don’t hold alone.

It’s when joy is at its peak that I want to share Lochlan the most.

At night, I sit in the living room with candles burning, and the warm glow against the yellow string of daffodils looks beautiful. Twelve Aprils have come and gone, twelve Aprils caught in my chest. What I create each year is not a vigil, but a deliberate way of loving him, being his mother. Each petal made so carefully, each step something I needed. I’m in no hurry to take these cardboard flowers down, I know full well they will still be hanging in August, even though the daffodils outside will be buried in the dirt, preparing to sleep for winter. Next spring, I might try a new craft, or dig a garden, or build something that seems completely arbitrary to an outside eye.

Only last week, I was pulling weeds in the front yard when someone walked by and said,

“I love your yard. I love the way it feels.”

I smiled at all the scattered toys, the huge trampoline on the grass that will forever erase any aesthetic of ‘cute and trendy’ for our home. There were signs of my kids everywhere. It was easy to know I was a mother here.

“Is it because of all the toys?” I asked her, laughing.

And she paused for a moment, thinking.

“No,” she said, “it’s the way your house makes me feel when I walk by. It’s happy. I feel warm when I’m near it all.”

For a moment, it was April, and I was a new mother, standing in the grocery store with a baby wrapped against my chest, a loaf of bread in my hand.

And my breath exhaled, all the way.

Thank you for reading. Xo

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She sat on the cushioned bench with a tray across her lap, hair wild and a big smile stretching across her face. She had a paintbrush in her hand, her clothes were covered in splashes of colour with bright smudges of black on several of her fingertips. She hadn’t seen me yet. I was standing just outside the door, where artwork from the week of camp with eager kids covered the windows. In rows of neon and black and white squares of paper I could see the story’s of each individual child’s mind; neat arches, hurried shapes, fantastic impressions of trees and sunflowers, collages of tigers with lips and eyes. Nestled into the black and white drawings was the unmistakable offering from my daughter. Her snowy landscape differed from the others; it was a single snowflake, or maybe a solitary snowball. It was a piece of ice at the bottom of a lake, or maybe it was the sun, bursting through the heavy clouds everyone else thought were impermeable. It could have been missed, if no one was paying attention to the gaps, but there was room for her, here.

Next to my daughter was another little girl, a little older, or maybe she was the same age, to be honest I find it hard to know if her age matches those of the little girls around her. They are different in the way they move and express themselves. My daughter is smaller than most, the triple 21st chromosome floating in her DNA keeping her a full head below the height of her peers. I can see my daughter colouring with felt makers while the girl beside her braids some red twine into a bracelet. Later I would discover a similar bracelet of red string wrapped around my daughters wrist. A keepsake from a friend she just met that week.

To her left is the 1:1 support attending camp alongside my daughter this week. She’s a cheerful woman with tattoos on her arms and legs, her mouth boasted a big laugh on the first day we met. I could tell that this woman held a lot of love inside her, that she had the capacity to hold the preciousness of who my daughter is. In the nearly ten years of being a mother to a child with a developmental disability I have discovered I can tell almost instantly if the person I am handing her over to has the eyes of someone who can see to the heart of things. I knew as soon as this woman sat on the floor alongside my daughter, instead of choosing to sit in a chair above her, that she would end the week with a gift she wasn’t expecting. She is holding out felt markers for my daughter to grasp, one by one they cover the white paper in colour together, each of them claiming a role to the chaos of colour.

There is a fan just to the right of my daughter, swiveling back and forth a foot away from her body. I told the camp leader that she has a tendency to overheat. ‘She might need to take a break in cooler room’, I had said on the first day. It was July after all, there’s no controlling the weather. ‘We brought in a fan, we brought the coolness to her’, they said when I arrived for pick up the first day. Some of the other kids were hot as well, and had flocked to sit together, all painting on the floor as one. On the table in the middle of the room was a little speaker playing music, as I stood outside the door frame I could hear some of the kids singing along to the words. It’s a cruu-uuu-uuu-el summer. I had mentioned that music was a wonderful thing for my daughter - when transitions felt hard or tasks were overwhelming, music helped her try a little longer. Now, I could see groups of kids working on different kinds of paintings, humming along to the song, quietly finishing their works of art.

The camp counselor saw me first, smiling wide and shifting her attention towards the trio on the floor. ‘Kenzie, Mom is here!’ she said, and the woman to my daughter’s left repeated the words, ‘Kenzie, Mom is here!’ Then, putting her fingers in a ball the way I had shown her on the first day, she brushed her fist from chin to cheek, signing home. I watched Kenzie understand the sign, offering it back to the woman helping her, then she turned to the door, knowing that’s where I would be.

Kenzie’s eyes were bright. Her smile told a thousand stories.

I have witnessed Kenzie at the end of school days for years. There is difference between her being ready to leave a place, and her wanting to LEAVE a place. The difference is marked by behavior. If it’s the latter, she will not say hello to me, she will walk towards me immediately with her eyes closed, like she is trying to forget what the day held before even exiting the room, like she needs me to guide her away from everything she no longer wants to see. I know when she leaves a place with her eyes closed that she has been misunderstood for nearly the entire time she was apart from me. I want to hold her in my arms on days like this - I want to promise it will never happen again, but I know it will. I can’t change the heart of everyone who meets her. I can’t hold my arms up forever; even concrete cracks under too much weight. I have watched her leave classrooms and community spaces with her head down, eyes closed. I have absorbed the sadness I can feel melting off of her when she finally lets me hug her on the way to the car. I have cried while wondering what her day held, or what her day lacked and have said to myself ‘never again.’ I don’t know if its foolish to keep trying, to immerse my daughter into spaces that require immense work on my part to become welcoming. This week of art camp was another try at inclusion, another hopeful attempt to give Kenzie a place to belong outside our home. I don’t know if I am getting it right. But I do know that a life of solitude is not what I wish for her, that I am constantly hoping the echos of our efforts will rebound into a community that thinks of her, when they think of everyone else.

Today, Kenzie’s eyes light up when she sees me in the door frame, but she doesn’t get up right away. She lingers, and I know its a signal she wants to show me what is around her. I enter the room and squat by her feet as she sits on the bench next to her friend. I smile back at my blue eyed girl, and ask about everything I can see. ‘Is this your painting?’ I ask and point to the art on her lap. She smiles and points. ‘Peeyyn’ she tells me proudly. ‘Is this your friend?’ I ask, gesturing towards the little girl sitting next to her, and Kenzie leans her body towards the girl, touching her forehead to the girls arm. The girl smiles, almost sheepishly, almost like she doesn’t deserve such a good friend. Kenzie is telling me this girl is nice, and I understand this girl has made Kenzie feel safe. ‘Are you happy?’ I ask, already knowing the answer but wanting to soak in the golden shine of what it is to hear her tell me. ‘Peeeeeee’ she say’s, signing her hands in a whirlwind of palms whooshing upward from her chest to chin. Happy.

It makes perfect sense that there are no words to describe the joy that radiates from my non-speaking daughter when she feels seen and valued and respected along with everyone else in the room. Just like everyone else in the room. There is no use trying to put words to such a thing, when only the indescribable swirl of colours like tangerine, neon pink, and electric green will do.

This is the last day of camp, and I am wobbly with gratitude knowing the goodness of what my daughter has experienced, and equally sad for six more weeks of summer without any peers. Her support worker picks up her backpack and hands me a folder packed full of artwork from the week. ‘She made so many gorgeous things!’ the woman with tattoo’s exclaims, and I am lost in how to explain to this woman the magnitude of what she helped make happen. Before I know it, I am stumbling over words and holding my daughter's hand. I am trying to share what this week has meant to our entire family, even while knowing I can never truly explain to this woman what it feels like to carry grief the size of a mindset with barriers. I can’t describe the shape of a heart that isn’t included, nor can I paint her a picture of my daughter’s isolation.

So I cry. Big, fat, salt-filled tears. I cry even though I hate crying in situations like this one, where my tears are misconstrued from gratitude of heart, into beholden heroism. It can be dangerous to cry in a situation like this, where ‘thank you for being human’ mistakenly turns into ‘thank you for taking on the impossible task of including my daughter. You are a hero’. I almost never allow tears in a place like this one, but this place has felt different from the very start.

Advocacy is such hard work. Not because what my daughter needs is so complex, in fact what she needs almost always benefits every other person in the room. A fan, music, breaks to relax. Sometimes what she needs is a human right. Access to a bathroom, language she understands. And most often, I feel like I am persuaded to believe that what I advocate for on behalf of my daughter is too much, or too hard to provide. When I step away and look at what Kenzie needs to participate I feel angry that for her, and only for her, the opportunity to use the bathroom requires paperwork, more money and many extra steps. When I deliberately peel back the layers and dissect inclusion; I feel outraged for the way we are funneled into believing that we are asking for anything different than the family standing next to us. Advocacy often feels relentless because it extends into every facet of our life - every outing, every park visit, every grocery store shop, every day. Advocacy is not only asking for spaces to include my daughter and recognize her whole self, it’s noticing what energy and beliefs fill a room, even when that room claims my daughter is welcome. Advocacy is believing with my whole heart that Kenzie deserves to take up space without changing who she is, and it’s trusting that when I’m not there others will believe in her right to that space for me.

There are never enough words or enough ways to show what is inside my heart to the people who create places like this one, so I say to the woman with tattoos ‘thank you, for all of this.’ I gesture to the room, the mindset, the way my daughter was ordinary for a week. ‘Kenzie doesn’t get many opportunities like this one’ I say, and I am wiping away tears and smiling at my daughter, letting her know I’m happy and these tears are just the overflow of joy in my heart. Kenzie puts her cheek to my arm, telling me something, and I nod back.

Yes, I think, this place was good.

The woman with tattoos fights back tears, too. ‘I really loved being with Kenzie this week’, she say’s. ‘I wish we had more time together’. Kenzie is only allowed one week of camp, that is all this program is able to offer us, and we gladly soaked in all five days. There are so many kids just like Kenzie who want to come, participate, and we need to make space. I know there will be parents just like me standing in this room next week, trying to find the words they simply can’t summarize. ‘I had so much fun with you Kenzie.’ The woman with tattoos is now on her knees, eye level with my daughter and smiling. She has big tears on her right cheek. And I know she means it, I know she wishes she had more time with my daughter. I know what it is to be let into Kenzie’s inner circle, to reap the rewards of understanding, to be allowed the solar system of her laugh. I know that after five days this woman now understands better what access to community means for someone like my daughter. I can see a fire behind her eyes - the gift I hoped she would receive - and I hope she uses it well.

The little girl who sat with my daughter today, and most likely several of the camp days, moves closer to Kenzie and stretches her arms out in a silent ask - can I hug you? Kenzie, recognizing the way someone understands her voice, stretches out her own arms and briefly taps the girls back. ‘Will Kenzie be in this exact camp next year?’ the little girl asks me. I can hear hope in her question, I can hear the story of what it meant to meet someone like my daughter. I smile, answering her while answering myself, ‘Yes, she will,’ I say. ‘She will be back.’

It’s possible that my tears and my words will forever be misconstrued. That even now, after telling this story, the narrative heard will be that a summer camp heroically included my daughter in it’s programming. That it is victoriously the champion of this tale, providing a place for disabled youth to spend a few wonderful summer days. Or, perhaps the narrative will be that a summer camp made changes after recognizing gaps in equity, that acceptance and taking up space was prioritized which allowed my daughter to sit in a room with peers. It’s possible that what I have laid out here will never be uncovered, unless I uncover it plainly. So, let me explain. Because what this summer camp did, in fact, was simple. And no, the simplicity wasn’t in equal access or the creation of supports for disabled kids to join in. The simplicity was the recognition of my daughter’s humanity. It was simple, the way this program made space for my daughters small hands, little body, creases at the edges of her almond eyes, her bellyful of laughter and curious mind. It was simple, the way they allowed her whole self to arrive, the way they made her body feel cool and the way they asked, in her way, what she needed. It was simple to allow a friendship to blossom without words, or to believe a single tangle of white paint was just as glorious and worthy of display as anything more intricate.

The meaningful inclusion of my daughter at this camp wasn’t heroic - it was human.

It was a simple thing, for my daughter to be seen as a full and good person, whole, instead of as a policy to be filled or a problem to solve. What this program did wasn’t grand or dramatic, it was simple, which is what made it radical. This camp shifted the perspective from inclusion being something we hope for, to something so meaningful, it felt ordinary.

Stepping into the sunshine with Kenzie always feels good. As we leave, I hoist her backpack over my shoulder and we hold hands while walking towards the car. Kenzie is smiling and shaking her head back and forth, letting the breeze lift her hair from her neck, little wisps floating past her cheeks and nose. She drops my hand for a moment, long enough to twirl, twice.

She is very, very happy.

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My deepest gratitude to UBC Camps for recognizing the need for community programing for kids with disabilities in our area. For any families looking for an inclusive space to send your child in the summer (both to families like mine who are looking for support built into a program, and for families who are simply searching to support programs that are including kids like my daughter in regular programming), I have linked the program below to bookmark for next summer.

UBC Summer Inclusive Camps

Things you can ask any program you are signing your child up for in the summer:

• What supports does your program have in place for kids with disabilities to attend and be meaningfully included in the weeks activities?

• If someone non-speaking wanted to attend this camp, do any counselors have an understanding of and use ASL (American sign language), or have experience with AAC (augmentative and alternate communication) devices?

• Would your camp ever consider seeking out funding to hire dedicated supports so families don’t have to take on the finical burden of extra costs so their child can attend?

• Our family is looking for an inclusive experience for our child this summer, which program of yours can I sign them up for that will include the opportunity to create friendships alongside peers with disabilities?

Thank you so much for reading or listening, it means the world.

Xo

Katie

I am not asking for much. Only for my daughter to sit in a community space and create art like any other nine-year-old child. She has a developmental disability, and the community she lives in relentlessly uses it as an excuse to exclude her.

When she was a six-week-old baby, I watched a therapist cup my daughter’s torso and neck in her hands, modeling how I should support her body’s low tone. As I watched her hands shift my daughter’s body ever so slightly, she smiled at me and said, ‘Just the smallest change can make a huge impact on her.’

Down syndrome never felt scary to me; though, from the very beginning I could see how it frightened nearly everyone else. I have witnessed her community’s assumptions that she will never be able to contribute value, and I have watched as she is treated as valueless. My heartbreak feels difficult to explain; seeing a quiet belief flash behind someone’s eyes, knowing their actions and lack of inclusion today leads to a future of loneliness with possible deadly results. Still, I never could have envisioned our community’s systemic failures as they are today.

Most recently, my nine-year-old daughter with Down syndrome was denied access to a community-based art program.

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I enrolled my daughter in an art course at 4 Cats, a well-known and highly recommended art studio for kids with locations in Vancouver, British Columbia. It was a three-week workshop set on Wednesday nights for a few hours with kids her age. The goal was for her to enjoy doing what she loves outside the walls of our home. The goal was for her to be immersed in her community, taking up space and belonging. I hoped for her to experience something she loved alongside peers, an opportunity she rarely receives. This was to be my daughter’s first ever experience in a community class, three nights sitting in a room with kids her age, feeling happy.

When registering for the sessions I noted my daughter’s unique support needs, which include requiring an adult to help facilitate the activities organized by the studio. From experience, I knew that community programs seldom provide the necessary support for a child with a developmental or intellectual disability to engage in programming. This is a barrier often in place, and I offered to assist her during the three classes, supporting her through transitions and the evening’s activities, and I emailed the studio to express my excitement for my daughter to participate; she has a remarkable eye for colours and painting.

The following day, I was contacted by 4 Cats and told that my daughter could not attend the art workshop. The studio manager emailed me stating “our policy is no observers during class. Unfortunately, we can’t make exceptions to this policy and cannot have you in the class.” She offered my daughter a different class, catered to kids and parents, not peers. The manager explained that the presence of an adult in the room, no matter their role, would disrupt the experience of all the other children attending, and the option for my daughter was to have a parent support her on the weekend instead.

I am familiar with exclusion being framed as support. I understand the specific support my daughter relies on is the reason she is not welcomed at all. I recognize that well-intentioned policies often mask the reality of exclusion. However, I had no idea that an art class for kids would so clearly exclude a child based on their disability.

I responded to the manager of 4 Cats, stating there must have been a misunderstanding. I emphasized that enrolling my daughter in the weeknight class was intentional, we were searching for a shared experience with her peers. I explained that if 4 Cats had someone who could support my daughter in their studio, I would be happy to stay out and not attend. All I wanted was for my child to be included.

‘4 Cats is not equipped or trained to support children with specific needs,’ I was told. Instead of accommodations, the manager from the Kitsilano Studio emphasized the 4 Cats policy of "no adults." There were to be no exceptions.

My daughter, and what she needs to thrive in a joyful art class experience, was a disruption.

A second family has since contacted 4 Cats, who has a daughter with complex medical needs. This eight-year-old has a tracheostomy and depends on a nurse, or parent, at all times for medical support. When this family contacted 4 Cats at a second location, asking for accommodation for their child, they were told the same thing. No adults, no exceptions. Her daughter could not attend.

4 Cats denied two children an art class because they need support. These two children need support because they have a disability.

It is impossible to call this anything but discrimination.

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Beyond the blantant discrimination and exclusion of my daughter from something as simple and joyful as an art class, lies a broader systemic failure that refuses to go away. People with disbilites cannot access community support.

In an article from The Tyee, journalist Katie Hyslop reports on the recent investigation of exclusion in schools by the Ombudsperson, who represents British Columbia’s independent voice for fairness and accountability. The article quotes Karla Verschoor, executive director of Inclusion BC stating that schools are “seeing an increase in the severity of complaints from parents of students with disabilities, as well as school administrators and teachers themselves, about school exclusion in recent years.” The exclusion of kids with disabilities within many school districts in our province has never been a secret, and this investigation is revealing that caregivers and parents have long been sharing that exclusion is only getting worse. In my daughters elementary school experience so far, we have witnessed a glaring difference of what inclusion means depending on which school she has been enrolled in. My daughter has been welcomed with open arms and supported wonderfully. She has also been forgotten so terribly that our family pulled her from a school and applied cross boundary. Administration's mindset creates a trickle-down effect that holds true whether it’s a school or a community art program.

If my daughter is valued and believed to contribute meaningfully by everyone around her, we see her surrounded by peers. If she is regarded as a burden or a problem to solve with nothing of value to offer – we see her alone.

People with developmental disabilities often spend their entire lives without the support they need to thrive and lead meaningful lives. Recently, the Representative for Children and Youth released another report emphasizing the urgent need for immediate action for children and youth with disabilities in BC. Their report states that access to “inclusive community and recreational programs, as well as spring and summer programs,” is among the top five service needs that provides wrap-around support that benefits an entire family unit. “These types of programs do more than provide children with social and developmental benefits of belonging - they also give caregivers much-needed respite, lifting up the whole family.” Families are struggling, yet the community, which is in a position to change policies and welcome children with support needs into their spaces, is just standing by, watching. The report reveals that 70% of the 12,000 individuals under age 19 living with a disability in BC did not receive the necessary services and support required for their well-being. Services like speech language pathology and physiotherapy create lasting positive effects for my daughter; they help her navigate a world that was not built with her in mind. Without those services, she cannot participate or communicate effectively to ensure her inclusion in school or programs, and adults tasked with teaching or coaching her begin to believe that she cannot be taught or cannot play.

The cycle of exclusion can have tremendously dangerous results, seen in the life, and death, of Florence Girard, a 54-year-old woman with Down syndrome living in a government-funded share home in British Columbia. Her death was ruled a Homicide by starvation, weighing only 50 lbs when police found her. A Coroners Inquest revealed sweeping systemic failures in the oversight of care for someone like Florence; she had been left alone, those who were responsible for her care had forgotten her, and the idea that my daughter could be immersed in this horrific situation after I am gone terrifies me beyond measure. Florence did not spend her aging years surrounded by a community that believed in her, she did not experience wrap around support. Florence did not benefit from a core base of inclusion that set a foundation of belonging from her youth to her final days. The heartbreaking fact is that Florence Girard is proof of what happens when society decides that some lives matter less than others. Florence lived, and died, in a community that did not notice her unique spark was missing from it.

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There is a clear and direct line running between the exclusion happening in schools, the lack of funding and supports for families of children with disabilities, the death of a woman with Down syndrome in government-funded care, and the exclusion of a nine-year-old child with a developmental disability from a community art class. They are all connected, they all behave as the backbone for each other to exists. If my daughter continues to be excluded from anything that connects her to friends, connects her to opportunities that build passions for hobbies, if she keeps being excluded from anything that allows her to succeed and contribute meaningfully to her community, the effects will be lifelong. She will experience catastrophic isolation, and her community will continue to believe that it’s okay for her to be excluded, because it’s all they’ve ever known.

In a 2014 research article, it was reported that 50% of people with intellectual disabilities are chronically lonely. This statistic reveals that for someone to feel chronically lonely, it would need to happen all the time. Maybe, every day. It makes me think about how segregated schools can be, and how a child with a disability won’t sit in a classroom with peers. It makes me think about how playgrounds are often inaccessible, and a child with a disability will often watch their peers play from a distance. It makes me think about how sports don’t offer support, and kids with disabilities regularly don’t play on teams with peers. I think about summer and winter programs, how they rarely register a child with a disability, and that child will spend so many summers and winters alone, not with friends. It makes me think of a teen trying to get a first job, and no job will take them. I think about how a kid who grows up not being included, becomes an adult who will feel lonely every day. And I think about how this is the fault of society, the fault of barriers always being in the way. The fault of bias, and the fault of a community who continues to exclude someone like my daughter from everything that is a doorway to connection and joy. This statistic makes me worried for my daughter’s future; my daughter who is vibrant and funny and incredibly capable of being a good friend. She is capable of learning and participating, as long as she is surrounded by people who believe she deserves to learn and participate, who offer her the support she needs, and is entitled to.

The exclusion of my nine-year-old daughter today, contributes to the inherent bias she will encounter as she grows older.

Allowing a community art class to maintain a policy that openly discriminates against my daughter and denies her access to opportunities for fun and friendship, further ensures a life in which my daughter is more easily disregarded as an adult. Small businesses and programs are of course, allowed to make their own policies and rules, but the hope is those policies make space for everyone. When businesses and programs are aimed at supporting the community, and the policies in place are sweeping statements of exclusion towards the most vulnerable within that community, the ripple effect is a self fufulling phrophecy - no one see’s disability, so no one expects it.

When we uphold the notion that individuals with developmental disabilities are less deserving of a life rich with experiences and connections, we are cementing a future marked by isolation and loneliness.

We are creating the possibility for someone to starve to death, forgotten and alone.

Nine years ago, I had no idea that the advice from my daughters very first therapist would prove to be what our world desperately needs to hear.

'Just the smallest change can make a huge impact on her.’

My daughter often has no opportunity to share experiences with peers in her community because community programs systemically do not include a child with a disability. I have found through the years that her particular developmental disability stretches her even further from where her peers can so easily go because a child with a developmental disability has historically and repeatedly been left out and left behind. When the manager of 4 Cats in Kitsilano called to speak with me, she told me she understood my frustration and that “a family like mine” must find it very frustrating to find programs for my child. And yet, she changed nothing. ‘No Adults allowed’ may seem like an across-the-board rule for this studio, but in practise, it becomes a tool to keep out children who need support.

‘Just the smallest change’ in this case would be allowing a child with Down syndrome to attend a Wednesday night class with kids her age. The smallest change in policy could have created a richer experience for all the children in that room. And, it would have brought my daughter joy.

I am not asking for much, yet our community insists that what I am asking for is impossible. I only want my daughter to sit in a studio and create art like any other nine-year-old child. She deserves to grow up surrounded by adults who were raised to believe she deserves that opportunity as much as they do. She deserves to live in a community that has decided creating access for her participate as a child will lead to an adulthood full of possibility. She deserves that chance. She deserves to experience joy from the center of all that takes place – not at the outer edges of everything. I am not asking for too much, just for you to finally look, and witness what is happening for people with developmental disabilities around you. I am asking for the smallest change, to create the biggest impact for all kids, but mostly, for a child who paints the world in neon colour.

What can you do?

I am exhausted by the constant fight to have my daughter included in programs that enrich her life and bring her joy. My advocacy today is writing this article, and tomorrow I will try again. In the mean time, you can contact your kids childcare, their spring and summer break camps, their soccer coaches and swim instructors, the local art class your child enjoys - and ask them how a child with a developmental disability could participate. Ask them what it would take to include someone like Kenzie. This question alone brings the lack of inclusion of children like my daughter to light, and at the very least, makes an organization aware that they have work to do.

Share this essay. Get this in front of as many eyes as possible. The more we share what is happening for people with Developmental Disabilities in our communities, the more we help shape a life with more access and belonging.

Thank you for reading.

Xo

Katie

For anyone using a screen reader, or prefers to listen, there is a voice recording of this post below. A play button is on the far right.

Right now in Vancouver, British Columbia there is a very public, very heartbreaking Inquest taking place in Coroner’s Court, investigating the death of an adult with Down syndrome. Florence Girard is her name, and if you google the facts, you will feel a twist in your guts that will remain there long after you close the news page that holds a photo of her smiling, living, and feeling loved.

Florence died of starvation, and I’ll leave it at that. There is no explanation beyond those words that can eliminate the horror that trickles down my back, cold remnants of truth that leak into my skin. There are no words that can dull what my mind can imagine.

I have a daughter, and she is so much like Flo. She is laughter and sunshine. She is opinionated and confident. She loves movies and hot dog buns, Taylor swift and soccer. She wants kisses until she doesn’t, and she will tell you exactly how she feels. She twirls when she’s happy, she rocks back and forth when she’s concentrating. She loves hide and seek, painting and washing anything she can find in the sink. These are the things that define her, the things that make her glow and make her exaclty who she is. These are the threads that make her human.

And yet, when I lay awake at night after listening to an investigation that is broadcasted live, picked up by thousands of news outlets, and seeping into the homes of anyone who wants to listen, it’s not the way my daughter shines in the sunlight that pulses behind my eyes.

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There are other ways my daughter is much like Flo.

She an intellectual disability. She does not always understand when someone is being cruel to her. She does not use words to communicate. I have witnessed her being left out often, because she is misunderstood. She has experienced the heartache of neglect and discrimination. She has been discarded, all while containing a galaxy of wonder within her ocean blue, almond eyes.

She is nine.

I have screamed. I have demanded better, I have yelled into the abyss that so many parents before me have. I have rattled my fists at doors, only to have them opened enough so I could hear to the words ‘this place is not for her.’ I have slung my heart from a hook and waved it wildly in front of anyone I thought might notice. I have watched apathetic smiles rigidly hold tight while backs turn. I have felt the exhaustion of holding a line, while others around me skip past, never holding anything.

And when it feels like hope is lost, when my chest rips open and I am afraid for the future of my child, when I begin to believe that no advocacy will ever be loud enough to make the world understand that demanding for human rights should never require the report of a death to garner systemic change - I do this.

I notice how she glows in the light. I witness how she pushes against shadows the way she pushes against beliefs. I photograph her again and again and again, sharing images of her delicate fingers and almond eyes, catching moments of the way she closes them against the brilliance that is her reflecting back on herself. I notice how light bursts from the edges of shadows when it finds her. I show the world the beauty of difference, instead shouting it into the void. With every photograph, I feel her radiate. I absorb a wallop of joy.

We all know the saying ‘a photo is worth a thousand words.’ I often wonder how many words I’m saving, how many instances of frustration and heartache I keep at bay, by sharing a photograph of her vastness, instead of trying to explain it.

I want my daughter’s unique and wondrous human threads to save her from a world that persists in it’s beliefs that she is undeserving of humanness. Mostly, I want to know that when I am gone, she will be loved and safe.

So I do this.

I photograph the truth, and wait for it to landslide into change.

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I believe in the power of a photograph. You can find many more images of the beauty of Down syndrome on both my personal Instagram @katie__jameson, and my Family Photography Instagram @katiecrossphotography

For more information about the Death of Florence Girard and the Coroners Inquest happening now, go to www.downsyndromebc.ca or visit @downsyndromebc on Instagram.

Thank you for reading.

Xo

Katie

A note, before you read. I wrote this little essay a few weeks after my son Lochlan’s tenth birthday. On April 5th of this year, he would have been ten. Instead of watching his eyes change and his body grow as each year passes, we have held his memory and our love for him tight within our chests; we have celebrated every birthday of his, without him here. Lochlan died when he was 22 days old from a rare disease that was barely even in medical literature at the time. He was the third documented case of having this particular KRAS gene mutation, and it would not allow him to live. As the years have drawn closer to this one, I have felt my grief gather into the edges of me, what once felt soft has again hardened, and meeting a decade without my son has felt immense and impossible. I once described the longing for him like this; if I dug my hands in the soft sand over and over again, its possible I could dig quick enough to catch a glimpse of his face. But the sand falls back on itself in a rolling tunnel, and no matter how much I pull it away, the sand won’t let me look through.

Time is a thief, and a gift all at once.

I have spent the last eight months submitting this flash non-fiction to different places, I have wanted this story to be told, and my son’s memory to be shared. I wanted someone to say to me ‘oh yes, we must print this. This is more important than anything else.’ Of course, that isn’t what happened, and my tender heart has been told no over and over again. It’s particularly hard to hear when it’s the story of your child’s magnificent tenth year, the story of your mothers heart, aching for the baby who made you a mother. Alas, this short piece has not been printed anywhere.

And it’s made me realize, I want this story shared more than I want it printed. I want these words in the world more than I want to hear someone say its good enough. I want my heart to release the weight of a decade, at the very end of the year he turned ten. I want to share these words, and have them reach across a horizon I cannot see, to a mother on the other side of this grief.

So, I want to say thank you, dear reader, for giving me a place to release these words, and allowing me to leave 2024 with this story told. I am so lucky that I can share this story here, that I have the choice in where this is told, when so much of my mothering of Lochlan has been out of my control. I have held this to my chest since the sprouting of April, and in the quiet dark of winter, it’s time to let it go.

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A Decade.

The number ten stretched long before me in streaks of blue and tangerine sky. I awoke to a puddle of sunshine dripping lazily through the windowsill and blinking hard; my eyes adjusted to the dazzling light. I pushed out of bed, edged my toes towards the warm patch on the floor, and stopped. Pausing in the grey was a familiar feeling; pressing myself between the shadows and the shimmering always helped prepare me for another birthday without him. In the years since my son died, I have never perfected the recipe for readiness - whether I turn my back or embrace this day fully - my heart is always left wanting. Ten feels sharp, a needle searching for the plumpness of a vein. Ten is soft, the curve of the age he would be, resting heavily in my hand like a newborn cheek. Ten is a confusing equation: wide and short, empty, full. Ten is my new favourite number and the one I loathe the most. Ten in gaping. Ten is endless and over too quickly.

I am not ready for him to be ten.

My grief exhales into balloons, elastic curves of plastic pushing joy into a room that will celebrate all that could have been. I have found this ritual necessary: stringing up a silver banner and blowing out brightly coloured candles. I have found that setting a celebration for my grief, creating a table of flowers and candles where it can sit, giving it a safe place to land, has become the kindest way to hold my hurt.

Throughout the day, my fingers will rest on the sturdy wooden corner of his framed photo, and I will make lunch for my children here. I will sing songs with a baby, weep on my knees, and wedge wet laundry into the dryer. Nothing has shown me how ordinary the arrival of comfort or sorrow can feel, like the constant turnover of time since he died. Spring always arrives, tulips pushing through the bitter earth, their soft petals blooming relentlessly. And constant. Like the way I keep finding joy in the wake of losing him.

I hear laughter in the afternoon and smile when I realize it’s my own. I lick the thick batter off spoons with my kids and trim burnt edges from the pan. I have never made a perfect cake; my hands are always too busy, and my mind is constantly drifting. We sing ‘Happy Birthday’ as little hands steal wisps of frosting from the plate, and I ask my husband to snap a photo of our celebration. This will always tug and heave within me, a birthday party without a birthday boy—the tangle of sorrow with joyous tradition. Fat slices of cake are passed, and after it all, I am standing at the sink with the setting sun. He died at golden hour, and I will always witness his leaving in the crimson cascade of light.

This year marks a decade since I held him, a decade of holding and growing into my grief. A decade of stretching to the tips of me, wearing the skin of someone who broke and rebuilt. A decade feels tremendous, yet never immense enough to hold all I have discovered. This life will hand me love, and I will never be the one to say when it goes. I will cup joy in my hands that outweighs and overflows, inhaling its scent and molding it into a memory. I will discover that even after the love of my life dies, my love lives on. Its magnitude cannot be contained. Not even within a decade.

So, I string up balloons, bake a cake, and watch the indigo night steal away my sun. I tuck my children into beds, kiss their warm cheeks, and recall my last memory of holding him. Pressed between the shadows and the brilliant lights, I am stretched to a horizon no one can see. Leaning into the cushion of my bed, my eyes adjust to the darkness, and the silhouette of a moment with him passes by. I drift to sleep feeling full, wanting more and comforted by the endless balance of both. In dreams, I can see the orb glow of dusk where it latches to the edge of a mountain; hope always hovers before the coming of night. I wrap my heart around it and let the glow carry me forward, knowing I have done the impossible.

I have settled into a decade of loving him, without having him.

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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.

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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.

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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

For anyone who prefers to listen, or is using a screen reader, there is an audio button below with ‘play’ to the far right.

I attended a caregiver’s respite retreat for the first time this weekend. I’ve been a parent to a child with a disability for nine years, and this was my first experience of intentionally created and purposefully implemented respite. I spent two glorious days with two dear friends who also have children with disabilities in a log cabin with a wood-burning fireplace surrounded by trees. The weekend was aimed at reflecting on the role of a caregiver for a child with a disability, which can be infused with intense feelings about your family's specific circumstances. Two days felt short, but it also felt like a gift, and we settled into taking advantage of whatever brought us peace: Puzzles, books, walking, sleeping.

My mind drifted to my son, as it often does when I find any square foot of space. If he had grown up - if he had lived - he would have had a disability so complex I would most likely have grown into an expert in medical intricacies beyond what even some doctors would understand. I would have been caregiving for his entire, beautiful life.

Somehow, the world spins on an axis, planets have moons pulling tides into shore, stars absorb and build every element on earth, and after the death of my son, I am a caregiver to my daughter.

The misconception of a weekend like this is that a parent needs respite from their child. It will be a long and winding and different day when I write about the systemic support not granted to a child - and by extension, their family - with Down syndrome. To describe the bone weary ache that comes with bracing against our worlds ableism, our world would have to actually name it. So instead, a parent is handed grief mislabeled as a diagnosis. Respite, for me, is relief from a world that won’t include my daughter.

I went for a run on the second day, and as the wind crested white tips off ocean waves as far as I could see, I saw my son. The grief from his death has informed everything in my life that came after, and I recalled the months of isolation that followed his loss. Often, people could not relate to me, the life I was living, the feelings in my chest or the words I spoke. Often, people stayed away.

And often, people would say, ‘I can’t imagine your loss.’

As I ran along the ocean, I realized that sentiment is similar for a parent to a child with a disability. We feel alone a lot; we feel unrelatable. People assume we have lost something - someone - when our child arrived.

People can’t imagine this life.

This life. So rich with happiness and cultivated joy. This life is so clearly full of love.

This life is not the reason a caregiver needs respite.

When my son died, I heard these words from almost everyone. They were a way to acknowledge my hurt without dipping too deep into the abyss themselves. These words were an off-ramp from facing the reality of what my life now encompassed, a way for people to u-turn a conversation back towards something more manageable. These words were a glossing over, a way to keep believing what was underneath was too hard, to unimaginable to imagine.

I so deeply want the world to see my daughter's worth, feel her vibrant colours of complexity and curiosity, and welcome her with open hearts and wide arms. I so badly want strangers to open their eyes and witness the joy of her life.

When my son died, I wanted people to witness my broken heart. To hold it without wishing it away. I wanted to be cared for, to be held and rocked. I wanted someone to hold my pain and name all my shades of blue as beautiful. I wanted people to imagine my loss, just like I want people to imagine my life as a caregiver. I want the world to hold the goodness of my daughter without wishing her away.

When I sit down to write about my bright and mysterious little girl, the words tumble out of me like a stream that has finally found its path down a mountainside. But when I write about my son - my grief and forever cracks - the words get stuck. I can never put them in order correctly. An entire book could never contain the love that was birthed alongside the grief and the story of my son.

Sometimes, I turn words into poems—short sentences that encompass a magnitude of feelings. At the respite retreat, I wrote this one. I wrote about the death of my son on a weekend away that arrived through my daughter's disability because the two of them—her and him—will never disentangle. I am a parent to them both. And I suppose that makes sense, that I would drift back and wish for this kind of tending, this kind of being cared for after my son died, at a weekend aimed at caring for the caregiver.  I wrote a pulsing, aching recognition of what it is to care for someone meaningfully, to witness them fully and what it is to stay in the room with grief and watch it build someone new.

A poem.

I can’t imagine…

But please, let me try. Can I rake the leaves off your lawn? Wipe the grass clean of rot, make space for air and buds to bloom. Can I tiptoe through your kitchen, can I warm your cup each time it gets cold? Can I throw out the wilting flowers? Can I spare you another dead thing? Can I turn down the sheets of your bed, make you a cocoon to sleep, shift, shed. Can I lay on the floor with you? Bury my cheek against the splinters of wood, let me feel the way grief consumes, how it rips at guts and leaves you open. Can I hold you while you break? Bone and blister of hurt. Can I stay to witness the building, the way you stand up again, turn to face the breeze. Sun rising, back bent, heart new.

Thank you for reading.

Katie

Xo

For anyone using a screen reader, or who prefers to listen, there is an audio bar below with a play button on the right.

(Image of Katie, standing on a beach at sunset. Its summer, the sky is pale blue and Katie is in silhouette, holding her dress against her pregnant tummy with the twins.)

The door was wide open, so she could have come in and sat with me, held me, or offered some kind of support. Instead, she remained within its arch, leaned her own body against the sturdy frame - held herself up – while remaining outside the area of impact.

My friend was sobbing. She was destroyed by the news we had shared. I watched the moment through a second set of eyes, out of body, detached. Does that make sense? I was removed; all the feeling had drained from my limbs and puddled around my feet. Then, I was over in the corner, watching it all happen. My friend wailed, and my empty body reverberated with each cry. Except my body wasn’t empty, not at all. Three heartbeats were booming under my skin: my own and the twins.

I wasn’t expecting this response from people. Wait, was I? I had spent time thinking about how to share the news carefully, so perhaps I was aware that people would take things a certain way. I had explained things in an email and even sent links to TED talks and articles that helped explain our future to friends and family better than I was equipped to.

I had advocated within moments of knowing.

And the answer to my hand extended, to the news I shared carefully and generously, was a friend who came to our doorway, not all the way in, and cried for a story she believed to be true.

This was a leveling of the field right from the get-go. It was a solid indicator of what the world around us would believe until we encouraged them to believe otherwise. I didn’t say playing field because nothing here felt like a game—this was a life we were talking about. This was my daughter.

From the corner, I watched myself straighten; my shoulders went back, and even though I could tell I also wanted to cry, I didn’t. I was watching my realization of an undertaking that would last a lifetime. I watched the thought form behind my cheekbones, then uncurl down my spine. I would not cry in open doorways; I would walk through them and guide whoever was on the other side to see the view from behind her eyes.

I knew I would do this before I even met her, because I knew my daughter would change everything.

My friend apologized. I must have been giving her a strange look, but I couldn't be sure because I was no longer watching us both from the corner of the room. I was back in my body with all the feelings of a mother who had just shared that one of the two babies in her tummy, one of the two babies who would arrive after the death of my first, would be born with Down syndrome.

I was a grieving mother. But I wasn’t grieving this.

There had been so many tears, so many nights I wanted to die, after the death of my son. I knew what heartbreak felt like, and I must have been saying all this to her without knowing I was saying it because her sobs suddenly stopped, and she nodded her head.

Both of these babies are going to be perfect… I heard myself say. A thought, before I knew I had thought it.

She stepped inside the doorway, hugged me, and apologized again. It wasn’t the last time I had to help someone move past what they believed to be true and find their way towards something that felt real.

When my friend was gone, I sat on the couch and cried. Not because I didn’t believe what I had just said, not because my daughter would arrive, and her eyes would be the shape of almonds. I cried because I knew for the rest of my life, I would watch people stand in doorways and cry. I would move through rooms, correcting ideas, beliefs, and biases about who my daughter was and who she deserved to be. I would spend my life leading conversations towards hope.

The year my daughter turned six, we were told she was non-speaking.  I found the formality of the assessment to be tiresome. I had known she would communicate without words for three years before any paperwork was signed, yet we needed an official diagnosis to access the support she deserved to have.  I had spent the better part of three years adjusting and re-calibrating to move alongside the quiet space of my daughter, yet when the woman across from me stated in clear, concise language, ‘Your daughter will probably never talk the way you are hoping she does,’ I crumbled into a thousand parts. All the steadfast advocacy and awareness broke away to reveal the tender and throbbing parts of me that were still waiting. Hope is a trembling tree branch, and sometimes it can hold you back from having. I realized after that appointment that I had been waiting for someone to tell me me which way to jump, waiting to allow joy to explode in front of me fully.

I was standing in a doorway, not all the way in, waiting for someone to come through and point me toward the unexpected, better pathway ahead.

Of course, it was my daughter who came and got me.  

I heard my friend open her car door, shut it quietly, and drive away. I wiped tears from eyes and stood up from the couch – I was angry that I needed to help her, that I needed to be the one to guide her when it was my heart, my family, that was experiencing life’s detour.

When I brush my fingers across the palm of her hand or lay beside her with eyes wide open, I can hear my daughter loudly. It’s always so easy when she nudges me away from what I believed to be true and helps me find my way towards something that feels real. She is so forgiving and so patient with me, always leaving room for me to make a mistake and then find the truer path. And she did change everything; she brought colours so vivid into my life I didn’t realize the brightest shades could only be felt, not seen.

My daughter does not wait in doorways; she opens them—wide and deep and always with a welcome to anyone who wants to discover who she deserves to be.

Even her mother.

(image of Kenzie on a green swing at the park. She is laughing and looking up towards the right.)

Thank you for reading,

Katie

Xo

For anyone using a screen reader, or who prefers to listen, there is an audio bar below this paragraph with a ‘play’ button on the right.

I’ve sat down to write an introduction to this space about six or four hundred times. I’ve written countless posts on social media that tangle together the tender and flapping sides of my heart, but for some reason here - it feels different.

I thought I needed to be precise in my beginning. I thought ‘if you’re going to share an introduction to something new, make it clear, clean and to the point.’ But after years of sharing stories about the grief that followed the death of my son, and the wide expanse of joy that arrived with a daughter who has Down syndrome, I can’t seem to pinpoint what my clear, clean and to-the-point message is. Perhaps the shape of the story I want to share is shifting, or perhaps, the ideas and revelations are still covered in soot, still aching to be revealed by a gust of hope from my lungs. Perhaps I don’t feel qualified or experienced enough to take up space in a world of loss and disability. Perhaps, like so many of us, I’m afraid to get things wrong.

I was invited to speak with my twins class a few days ago, to sit in front of an eager group of grade three and grade four students with wide eyes and deep hearts who had questions about their new classmate. My daughter, Kenzie, is non-speaking, autistic and has Down syndrome. She is the most captivating and incredible little girl in the world. As I shared with the kids about why Kenzie rocked back and forth and why she used an AAC device to communicate, I could see tendrils of uncertainly unfurl from their shoulders. I could see them relax into the understanding of someone they didn’t understand only moments before. One little boy raised his hand and timidly said “this might be rude, but I don’t know… well. What happened to Kenzie?” I wanted to hug him and rock him in my arms - this was the question I knew they all wanted to ask, and because they were afraid, most of them never would. Only a few years ago that question might have hurt me, I might have recoiled and put up a wall and thought ‘Nothing! Why don’t you see!! Nothing is wrong!’ But I have learned at the root of someone not seeing, is a web of never knowing. I have learned when curiosity goes unanswered, it slowly transforms to fear.

Fear, is the killer of questions. Fear leads to isolation, and extinguishes connection.

My answer was soft and simple. “Nothing happened my friends. There is nothing to fix, nothing to change, nothing to wish away and nothing bad. Kenzie is perfectly herself, just as you are perfectly you.” I explained to the kids that wondering is good when that wondering is kind. That instead of wondering why Kenzie did things differently, they could wonder how to include that difference easily. A simple shift, that made a world of difference.

The next day, I walked Kenzie to the classroom door and six different kids approached her to say hello. No one minded when she didn’t say it back. The teacher whispered in my ear “It’s like a light bulb went off and they are all chatting away with Kenzie before class, asking her to play, wanting to sit beside her at lunch, I can’t believe the difference…”

But I can. Remove fear, and you will have wonder that overflows.

My conversation with the classroom of eight and nine year olds made me think about the first year after my son died. I was consumed with a grief so thick it blacked out the world around me. I receded into the depths of myself, I changed, and I know people feared the version of me I became. I spent years feeling alone with a heartbreak so visceral, I walked with my back bent. And I wish people had met me there. I wish people had been curious about where I went. I wish there had been a removal of the fear that swirled around me, so that my grief could be understood.

Perhaps that is what I am doing here, sharing the grief and the joy with stories that delicately balance both. Stretching to the tips of myself, inching my way into the shadows and bright light of everything our family experiences. Revealing that sorrow will arrive in shades of gray, and because of the dull, happiness reverberates in blazing light.

Sharing stories of what it is to parent across the divide, what it is to parent a child with a developmental disability, and how it feels to parent three more kids who dance wildly in the space between both. This is what you will find here, and I’m very grateful you chose to join me, in This Neon Life.

More to come,

Xo

Katie