Hi! My name is Kylainah Zacharczuk, and I am the author of the book You Can Find me in her Shadow. My sister has special needs, and this is MY story.
In the beginning, this book was a journal entry, a moment in time I needed to finally remove from my chest. I desperately needed an outlet to finally release some of my childhood traumas, which continued to induce feelings of anxiety for me; the memories and truths that I avoided facing until now.
But the universe has a way of lighting the path you are meant to walk, and so shortly after my first two chapters were on paper, I started bumping into mothers who also had children with special needs. They seemed to be drawn to me, and questions poured from them. They asked if I’d share with them what it felt like for me, being the sibling of a special needs child. As I listened to them and felt their genuine desire to better understand my perspective, hoping it could inform them on how they could be better parents to their neurotypical children-as they knew their lives were changed as well. I knew it was time to share my story.
And so, my journal writing became a two and a half year, outpour of my deepest thoughts, feelings, insights, and truths. From this, a book emerged; intended to be a resource for others.
As the sibling of a special needs child, few people think of us, our needs, our feelings. I have lived my entire life struggling to fit into this world. Not sure where I’m supposed to plant my feet. One foot in the world of special needs, while the other struggles to blend in with the rest of my peers. It is my hope that this book may be the bridge that merges these two worlds together, finally. This book is a story of my life, from my perspective as being the sibling in the special needs space. And while it was extremely difficult to share, I chose to write honestly and allow my authentic truth to speak clearly, knowing that our story might help many other families like ours.
I wrote this book because I personally struggled with knowing how to be a sister to my sibling, and I longed for the resource that might help me. This book is what I needed. And my mother said that I wrote the book she searched for but couldn’t find. I also wrote this book to shine a light on the community of special needs, to let people see, hear, and understand these people and their families. And to help the world understand, and recognize in themselves how they intentionally, or unknowingly impact the lives of the person with a disability, and their family.
This book is for parents, to help them understand how much we (the sibling) feel all your emotions, hidden or not, we feel your fear, your guilt, your worry. I write in my book about how its important to not only listen to us, but to include us in the details as much as possible. Be transparent with your child, otherwise we go through this life feeling isolated, confused and alone. Over time, we may master how to hide our feelings, camouflaging them behind a mask of smiles, because we don’t want to overwhelm our already stressed family. We might become introverted and scared to raise our hand, afraid that if we don’t answer a question correctly, people may assume we have something wrong with us too.
I was personally secretly terrified they’d search for a label for me, like they did my sister. And for years I constantly searched for the disability within myself, not entirely sure how someone gets a disability.
I spent my life, trying to protect my sister from the judgment we felt from the world around us. The constant, ”What’s wrong with her?” ”Why can’t she talk?” ”Why can’t she walk?” And sadly, when she finally learned to walk, people would ask, ”Why does she walk like that?” and often it was asked right in front of her. Then, there were the adults who’d asked my parents what is wrong with my sister. After hearing my parents’ response, their replies always seemed to be the same, ”I’m sorry,” after hearing about her disability. Really! Imagine how my sister felt hearing that. I wanted to be her shield; be her big protective sister, but honestly, I felt helpless.
My sister, and her disability, are embedded into fragments of who I am, how I live in this world, how I see the world, and how I feel it, because of my unconditional love for her. I would never in a million years trade this life I have with her. I know my sister will never judge me, but instead love me for who I am. Not just because I am her sister, but because of who she is as a person. She has the kindest soul, and somehow she makes everyone in our lives feel better without being able to speak a single word. Her disability isn’t who she is, and I wish the world would look at her the way I do.
In the process of writing this book, I found it not only challenging and stressful, but at times, I even doubted my own abilities to articulate clearly what I had been suppressing for my entire life. I was honestly fearful to share it here with the entire world; my inner most thoughts, feelings, fears, all wrapped and gifted for everyone to experience. Some of the stories I share within these chapters, I haven’t shared with anyone before. Even my parents were hearing them for the first time in the process of writing this book. My mother wept as I shared my pages with her, each time wiping her tears and expressing to me that, ”Parents need to hear this.” ”I wish I knew this before.” ”This is important to share.”
I witnessed my grandmothers read the first couple chapters of my book, and their reactions were the same; they expressed to me that they hadn’t thought about me and my perspective before. They just assumed I was okay and happy.
And then to hear the positive responses from all my beta readers. How they couldn’t put the book down, and how they were crying already after only reading the first two chapters. Someone even shared with me that it inspired her to be a better sibling.
It has been a cathartic experience writing this book, and extremely emotional hearing the beta readers comments that my book was inspiring, informative, and well written.
As I sit here, pen and paper, I find myself wondering, what does the world need to know? The truth is, I’ve lived my life in two worlds. The world of disability and the world with everyone else. I eventually hid my sister from the world outside that of our special needs community, hoping I could shield her from the truth I was hearing; the actions I was witnessing, the ignorant society that I was struggling to fit into. I thought by concealing my world of special needs from my peers, I’d somehow be protecting my sister. But by doing so, I wasn’t living my authentic truth, and because of this, I never felt like I truly belonged anywhere.
As my book came to fruition, and the revisions, and edit process came to an end, an epiphany moment presented itself, and I stared at the possible realization that the sibling may be the bridge.
We stand in the shadows between two worlds that rarely coexist, waiting for them to finally collide and become one. A unity that would finally allow us to take root, as we are the product of both worlds. Yet we navigate this space in secret amongst everyone else, knowing we have been changed by the gifts we’ve been privileged to receive from our loved ones, and the special needs community.
My hope is that soon, you will, too.