Silence and Light, my memoir, comes out on September 3, 2024 and I hope you’ll pick up a copy. Words can not describe how excited yet nervous I am.
In this blog I share how the idea for this book came about, what the writing experience was like for me, and how writing is part of my healing journey. I also share some of my favorite excerpts from the book.
How did my book come about?
A few years ago I began thinking about writing my story but it felt overwhelming. My ex-husband, Todd, had really been pushing me to do this for a couple of years, since he knew I had a calling to share my story with others.
I talked with some other authors and every single one of them warned me that the only reason to write a memoir is for cathartic reasons. I knew that making money from my book was not my goal but I wasn’t sure if I was ready to face my trauma yet.
In Spring of 2023, I mentioned writing a book to my therapist - how scared I was and how I didn’t even know how to get started. She urged me to think about finding a writer who specialized in writing about trauma. Trauma?! I had never thought about my story as a mom as being traumatic. I knew that I had experienced grief after the diagnosis and at other times, too, but I never really thought about how that led to trauma and PTSD.
I soon connected with an amazing writer who I am so blessed now to call my friend. And that’s where my true healing process began. I had a Zoom meeting with her and I instantly connected with her - that is when I knew I was ready to write so I could heal. I also had hoped that part of this writing journey would help Todd and I relive some of the trauma we had processed separately so we could come up with a new shared experience of that trauma. I thought and hoped that writing this book would save my marriage.
The Writing Journey
In June 2023, Todd and I traveled to Nashville so I could meet with Alee, my co-author, for a long two days of interviews. We decided to make a trip out of it as well, because we love Nashville.
I thought the interviews were going to be easy since I had spent the last 20 plus years telling my story to others in the form of videos for the Hear See Hope Foundation, in writing special education and other disability related blogs, and in person as I provided direct support to families like mine. Boy was I wrong - the process of recalling all the memories was incredibly painful. But I didn’t truly understand this fully until several months later after my book was complete. More on that later.
I was amazed at how smooth the writing process was. After those few days that Alee and I spent together in Nashville, rehashing my life as a mom, things moved much quicker than I ever expected. Alee would send me chapters to review and I would read them and it was almost surreal - whose life was this? But, I kept my wall up and treated it like a business project.
In the fall of 2023, my book was finally complete! Alee then asked me to write the prologue and conclusion chapters. As I sat down, I was at a complete loss. So, I reread the entire book from start to finish and that’s when it really hit me - all the trauma. I was reading my own story but she felt like a stranger to me. Something felt wrong in my world, incredibly wrong.
Journey to Self-Discovery through Writing
A lot was unfolding in my personal life during this time, all leading up to this significant turning point. I realized that I was feeling - truly feeling for the first time in a long time. And it was scary. I realized then that I had felt numb for so many years - just trying to put on a smile to show my kids that everything was going to be ok, to prove to Todd and myself that I was a good wife and mom, to prove to others that I “had everything handled” and that my life was perfect. To the outside, our family had it all - I had it all.
If I had it all, though, why did I feel so alone? Why did I feel so unhappy? What was happening?
What was happening was that I was deciding to choose myself for the first time in a long time. I had dedicated my life to helping others - my kids, other families. I love doing this but I had lost myself along the way. I was drowning. I had nothing left to give.
I ultimately decided at this point in time to leave my marriage, which I have shared in previous blogs. How did I let our family become part of the statistic—one of those marriages that didn't survive the challenges of parenting a child with disabilities?
Here I was - at a crossroads - making big life decisions to leave my 25 year marriage, letting my kids down by breaking up our family. But, through all the pain, I knew that I wanted something different for the second half of my life. I wanted to love myself and live authentically. I didn’t want to pretend that my life was perfect - I wanted to acknowledge that my life was messy and I wanted to be grateful and happy for the mess.
Through this writing journey, I discovered myself because I allowed myself to feel for the first time in a long time. A lot of what I felt was pain but I have never been afraid of hard things. After all, my favorite character in the movie “Inside Out” is Sadness. I knew that if I really let myself feel all the feelings - the regret, the guilt, the sadness, the loss, there would be something waiting for me on the other side of this pain. I hoped it was joy, and it was.
I’m sure Alee was about to kill me but I rewrote portions of my book a few times after it was done. I wasn’t sure the tone was right. Did it accurately portray my marriage? Did it accurately portray enough feelings? Did it portray my life as “too perfect”? Did I seem like I was numb and drowning (like I was)? All of this was a lot to process, especially during such a hard time in my life when I had just moved out.
The Final Steps
It was early 2024. My book was complete. It was ready to be published. But I found myself paralyzed and not ready to do it. I was too vulnerable.
All along, I wanted the process of writing my memoir to be cathartic. It was more than that for me. It was life changing. There were many times in early 2024 where I considered never publishing. Perhaps I wrote this book for me - to heal. I also recognized that this was my story but it also was a story about Todd and my kids. With the divorce, I didn’t want to publish the book until I knew I could handle it, and until we were all ready.
What I realized is that I would never fully be ready. Writing my story and putting it out into the world is scary. It makes me feel vulnerable in ways I have never imagined. It brings up past trauma, grief, and PTSD. But it also reminds me of how far I have come - how far the boys have come, and how grateful I am that this was the life I was given. I’ve made so many mistakes along the way but I have come out stronger.
As I prepared for my upcoming publication date, it all felt surreal. As I opened the box of advance copies of my book that arrived in the mail, I was full of pride. Not because of the hard work it took to write my story but because of my bravery in acknowledging that there are many families that can benefit from reading my story. Over twenty years ago when we received Conner’s diagnosis, I felt so alone and isolated. I wish I had a book to read like mine - a book to help me understand that I wasn’t alone.
I hope you’ll pick up a copy of my book and that you’ll enjoy the read. I hope it’ll help my friends and family understand me better. I hope it’ll help other families like mine process grief and feel less alone. And, I hope it’ll help you be brave in all that you do to be the best parent you can be - to understand that parenting is hard and that it’s ok to just do the best you can at that moment in time. To give yourself grace.
The Audience
Although I wrote this book for me, I hope it’ll resonate with many different audiences:
For my friends and family - to hopefully understand why I sometimes seemed standoffish, shy, distant.
For other families of children who are deafblind or have other disabilities - so you feel less alone in your journey.
For others who don’t have a family member with a disability - so you can better understand some of the struggles that our loved ones experience.
My overarching goal was to foster greater empathy and understanding of our differences. As we pass by others on the street, we often have no idea what silent struggles they may be facing. I hope my book encourages compassion and inspires kindness toward one another.
What’s Next for Me?
I’m already writing my second book. As I mentioned, I love Silence and Light, and I hope it will help a lot of families. But, as I read it, I wished I had described my feelings in a deeper way. My next book will discuss things like letting go over control, not fitting in, perfectionism, and more.
So, this year, I’m focusing on myself and my new relationship, writing my second book, continuing my family support work, and cultivating new relationships and opportunities to share my story in various ways.
Thank you for following my journey and for your support.
Some of my Favorite Excerpts:
“Although I’m not someone who cries readily or often, I’d often find myself standing over him exhausted, tears streaming down my face. I was there for my baby boy and ready to give him the world, but without any way to communicate, I was left with only his blood curdling screams and a broken heart.”
“With each phone call I received, the pain got a little bit worse. I’d sit with Dalton in my arms and rock him softly, wishing that he could hear my voice just once. I’d tell him that I loved him, that it would all be okay, that we would do whatever it took to give him the best life possible, and, of course, that I was sorry. I would do anything for it to be me and not Dalton, not Conner. Despite my commitment to forging ahead, I found myself frozen in ways I’d never imagined. I was numb; I didn’t want to fight anymore.”
“That’s when a sense of dread washed over me: We weren’t invited to the party because anyone really wanted us there. We were invited because it was the “nice” thing to do. I looked around the table as the women slowly went back to their conversation. They were all beautifully made up and casually dressed in that way that was intentional but looked effortless. I glanced down at myself; my jeans hadn’t fit perfectly since yo-yoing of my post-pregnancy weight. My hair hung limp at my shoulders, and I hadn’t worn makeup in days. In that moment, I began to realize that a chasm was growing between “us” and “them.” Our lives had become about dealing with challenges, working for a cure, and finding ways to survive. I’d never know a life as straightforward as theirs. I’d never know the luxury of worrying about normal things. We’d never be like everyone else. We’d always be different.”
“As the months ticked by, I continued to feel the edges of isolation. Even once I was back at work and our nanny stepped in even further to help juggle things, I still felt like I was slowly disappearing under the weight of it all. Though Todd and I had great friends, it was difficult to feel like we could be completely honest with anyone about how challenging life had become. I didn’t want to be the friend who complains constantly, nor did I want anyone to feel bad for us. I still found myself answering questions about how we were doing with short, clipped answers. No matter how we were really doing, I always responded, “Fine.”
I guess I was fine.
But I wasn’t wholly okay.”
To order:
As mentioned in Business Insider, ABC, and more media outlets.
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