Thrive Rare: Embracing the Uniqueness Within

Dear fellow rare community,

It is with great joy that I share my journey of self-discovery and self-love with you. It took me a while to fully embrace my uniqueness and to learn that my differences are a privilege rather than a curse. But once I did, I found my purpose and place in the world.

In 2022, I wrote my first blog for the Koolen-de Vries Foundation, hoping to inspire and encourage families like mine. The response was overwhelmingly positive, and I was motivated to share my journey even more. In total, I had eighteen more blogs published, which brought me immense fulfillment.

For a long time, I felt like my differences made my life more difficult than others, and I felt like a victim to it. However, I realized that this mentality would negatively impact my children, and I decided to change it. I discovered my love and gift for writing, which helped me find my purpose and place in the world. It was amazing to receive messages of kindness and gratitude from individuals and parents all over the world.

I always dreamed of becoming a published author, but my lack of confidence and self-belief held me back. After months of blogging and receiving positive feedback, I knew it was time to write my book. I wrote about my life lessons, experiences, and how I learned to embrace my unique qualities. I wanted to let the world know that if I could do it, they could too. However, writing a book is not an easy task, and it requires a lot of time, effort, dedication, hard work, and most importantly, patience.

As this is my first book, I am still learning all the necessary steps to publish it successfully. There were moments of frustration and self-doubt, and I shed tears along the way. There were even times when I considered quitting. However, I learned that it’s okay to take a step back and take some time to regain focus and perspective. Sometimes, we need to rest to come back with fresh eyes and renewed energy. Resting is not quitting; it’s essential if we want to finish well.

My book is titled “Thrive Rare: Embracing the Uniqueness Within.” It’s a memoir of my personal story and a guide to help others find the strength to accept and love themselves for who they are, despite any challenges or obstacles they may face. As a wife and mother to three beautiful children, two of whom also have Koolen-de Vries syndrome (KDVS), a rare chromosome disorder, I learned the importance of celebrating our differences and embracing what makes us unique.

Writing my book was challenging, and I faced moments of self-doubt. However, I did research, sought guidance from other authors and writers, and worked with an editor who helped me bring my book to life. I also received incredible support from my family, friends, and the rare community, which encouraged me to see my book through to the end.

Throughout my journey, I learned the importance of self-love and acceptance. For a long time, I felt like I didn’t belong or that I couldn’t achieve anything great. But I learned that I was the only one holding myself back. I hope that my story will inspire you to embrace your unique qualities and love yourself fully, just as you are.

If you have a story to tell, I encourage you to trust your desire to make it known and believe in its positive impact. Your story could be the one that changes someone’s life. Let’s celebrate our differences and embrace our uniqueness.

The title of Becky's KdVS book
Photo courtesy of Becky Tilley

If you’d like to connect further, you can find me on Instagram at Koolen.Mama and Thrive Rare!

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