Hello there.

Welcome to this little slice of swirling colour.

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