The Rewrite, The Reality & The Road to Publication

Last week was incredibly productive, but also one of the busiest and most exhausting weeks I’ve had in a long time. I really had very little downtime. I was working 8–12 hours a day on my book, and by Friday I was so fatigued that I honestly felt disconnected and completely zoned out. I did finally get out to the movies super late last night with a friend, which was definitely needed.

But let me tell y’all what I’ve been working on.

I FINISHED THE REWRITE OF MY BOOK! 🎉

As many of you know, I announced a couple of years ago that I had written a book and completed the manuscript. But when I went back and read it, I realized it was much too clinical and political. After spending the last 11 years immersed in healthcare, advocacy, policy and the legislative space, that language had naturally become part of how I communicated. My friend Nancy and I talked about it, and I realized that what I really needed to do was tell this story from the perspective of a parent.

My original plan was simply to edit the manuscript and make it more relatable to parents of medically complex and disabled children, particularly parents who are newly entering the world of pediatric diagnoses. But once I started editing, it became very clear that the book didn't need to be edited. It needed to be rewritten completely.

I initially considered hiring a ghostwriter because, quite frankly, I was exhausted. I interviewed several incredibly talented writers but ultimately realized that they couldn't tell this story from the perspective of someone who had actually lived it. And the more I thought about the parent and caregiver community, the more I realized I didn't feel it was fair to outsource any part of this story.

I've always said that if I'm going to take people along on this journey, I want to be as authentic and transparent as possible. This is not a journey for the faint of heart, and I wanted to take a deep dive into what it REALLY means to parent a medically complex, disabled or special-needs child—the fear, exhaustion, advocacy, uncertainty, healthcare system, and all of the things that happen behind the scenes that people don't always see.

I simply could not outsource even a fraction of that.

This book needed to come 100% from my heart and soul. In many ways, it's a love letter to the parents and caregivers walking this journey. It's me saying, I see you. I understand you. I know this is hard. Let me sit with you.

Nearly a month ago, I completed the rewritten manuscript and sent it to my editor. This past week, we spent 8–12 hours a day doing a line-by-line edit and what was essentially a publisher's cut. The original manuscript was over 90,000 words, and we've now brought it down to a little over 65,000 words while preserving the heart and message of the story. And let me tell y'all…we CUT some words.

The feedback has been phenomenal, and this morning we also finalized the book cover. Seeing it all come together made this feel very real after years of writing, rewriting and questioning whether I was doing it right.

And I have to give it to my friend Heidi because I honestly think she's been more excited about this book than I have. 😂 (Insider joke.) LOL. If you know, you know. We all need a hype girl like Heidi!

"The Rainbow in My Skye" will be released in November in recognition of National Family Caregivers Month, and I am so incredibly excited to finally share it with you.

It's important to me that I get this book out this year because somewhere right now, a parent is sitting in a hospital room trying to process a diagnosis they never expected. Another parent is trying to figure out insurance, doctors, schools and therapies while simultaneously trying to hold their family together. I remember what it feels like to be that parent, and I want this book to meet them there.

I don't want this to feel like a textbook or a policy paper. I want it to feel like one parent sitting down with another and saying, “Let me tell you what I’ve learned. Let me tell you what I wish I had known. Let me tell you what no one prepared me for. Let me sit with you.”

That's the book I needed when I first started this journey, and it's the book I had to write myself.

For the next week, I'm going to decompress, catch my breath and hopefully have some actual downtime.

After several years of talking about this book, rewriting this book, questioning this book and finally finishing this book…

We're almost there. ❤️

With love,

Tomiyo Williams

Helping parents of medically complex children navigate healthcare with confidence, compassion, and the reassurance that they are never walking this journey alone.