The Biggest Project I've Ever Finished

For the past several years, one of the questions I've been asked the most is, "How's the book coming?" My answer was almost always, "I'm still working on it." The truth is, I actually finished the first draft quite a while ago, but after I read it, I knew something wasn't right.

It told the story, but it didn't tell our story.

The first draft was very clinical. It focused on diagnoses, surgeries, medications, procedures, and everything we had been through medically. While all of those things were important, I realized they weren't what I wanted people to remember after they closed the book. I wanted them to understand what it feels like to love a medically complex child. I wanted them to feel the fear, the uncertainty, the heartbreak, the hope, the resilience, and the incredible kindness of the people who carried us when we no longer had the strength to carry ourselves.

So, I made the difficult decision to rewrite it.

There were days I questioned whether I had made the right decision because rewriting meant reliving some of the hardest moments of my life all over again. Some chapters flowed effortlessly. Others left me sitting at my computer in tears, forcing me to step away before I could find the strength to continue. But every time I thought about settling for the first draft, I knew I couldn't. This story deserved to be told with my whole heart, not just my memory.

Today, after years of writing, rewriting, second-guessing myself, and wondering if I would ever reach this point, I can finally say something I wasn't sure I'd ever get to say.

I finished writing my book.

Even typing those words feels surreal.

The Rainbow in My Skye is more than a memoir about Crohn's disease. It's about the hidden journey of loving a medically complex child. It's about how chronic illness changes an entire family, the impossible decisions parents are forced to make, the people who become your village, and discovering a strength you never knew you had.

The manuscript is now in its final editorial stage, and for the first time, I can actually see the finish line.

To everyone who has asked me over the years, "How's the book coming?"...thank you. To everyone who encouraged me, prayed for me, believed in me, or simply refused to let me give up, thank you. Your support has meant more than you will ever know.

I can't wait to share this story with you.

— Tomiyo Williams

Caregiver Advocate | Health Equity Champion | Parent of a Medically Complex Child