Sarah is pictured to the left along with the illustrator and fellow NF advocate Amanda Day Rose

 

For Sarah Powlison, storytelling has always been more than a creative outlet—it has been a way to inspire hope.

Diagnosed with Neurofibromatosis Type 1 (NF1) at birth, Sarah has spent her life navigating the challenges of the condition while becoming a passionate advocate for the NF community. Born with six tumors that were removed shortly after birth, she understands firsthand the uncertainty that can come with an NF diagnosis. Over the years, she has transformed those experiences into purpose, serving as a dedicated NF Network Advocate in Washington, D.C., where she shares her story with lawmakers to help advance research and improve care for everyone affected by NF.

Now, Sarah is sharing her message of hope in a new way—with the release of her debut children's book, Certainly, Sonder. Inspired by the concept that every person has a unique and meaningful story, the book celebrates resilience, empathy, and self-acceptance. While children living with NF will undoubtedly recognize pieces of themselves in its pages, its message is universal: our differences are part of what makes us remarkable.

Making the project even more meaningful, Sarah collaborated with fellow NF advocate Amanda Day Rose, an NF2-SWN warrior, educator, and advocate, who brought Certainly, Sonder to life through her beautiful illustrations. Together, the two women—each living with different forms of neurofibromatosis—have created a story that reflects the strength, resilience, and hope found throughout the NF community.

We spoke with Sarah about fulfilling her lifelong dream of becoming an author, the inspiration behind Certainly, Sonder, and the message she hopes every reader carries with them.

Congratulations on publishing Certainly, Sonder! What does achieving this lifelong dream mean to you?

Sarah: Thank you so much! Writing and publishing a book has been something I have dreamed about since I was very small. I can remember writing stories that my dad would then take to work and type out on his office typewriter. To see a dream become a goal which then becomes a plan that I took action to see come to fruition gives me such a sense of satisfaction and gratitude. It feels like flourishing.

For those who haven't read the book yet, can you tell us what Certainly, Sonder is about and what inspired you to write it?

Sarah: Certainly, Sonder is about a little T. Rex who is not an ordinary T. Rex. With his long arms and razzly dazzly skin, Sonder is a REMARKABLE T. Rex. Through the love of his parents he learns the meaning of his name, and that everyone has a story, things they love about themselves and things they are still learning to love. This is a book about resilience, empathy, and loving yourself and others. Anyone with NF will certainly recognize themselves in Sonder, but so will anyone who has ever felt like they were different or did not fit in.

The idea of "sonder" has become central to your message. What does it mean to you, and why was it important to build your story around it?

Sarah: Sonder is my favorite word! It was coined by John Koenig in his book The Dictionary of Obscure Sorrows and it describes the feeling one has when they remember that everyone you meet or pass by has a story as deeply complex as one's own. It is that spark that recognizes the richness of life: the good, the bad, the ugly, the hard, and the lovely.

I have a personal life ethos to love my neighbor and what better way to respond in love to others than by truly opening your eyes to really see another person? Sonder is what helps us give others the "benevolence of the doubt," which means that I am going to assume the best about others, even when it is hard.

You've been a passionate advocate with the NF Network in Washington, D.C., for several years. How has living with NF1—and advocating for the NF community—influenced your writing? What do you hope children and families, especially those affected by NF, take away after reading your book?

Sarah: First of all, I have a plan to bring copies of my books to my Hill meetings next year and I can't wait to share! Hopefully this sweet story will be a memorable token of our message and request.

Advocating on the Hill and elsewhere has given me confidence to step out of my comfort zone. I have learned to be resilient, do harder and harder things, and to be the person who calls others in to walk and advocate with me. Stories are so essential to who we are as humans and taking an experience or a message and turning it into a story is a powerful way to communicate more than just facts, but feelings and emotions.

If you could leave the NF community with one message of hope, what would it be?

Sarah: I want readers and listeners to see that they are so much more than the things they cannot do, or the hard things that they have experienced, or even how they look. They are just right for loving others and for being loved, and they are just right for making the world a little better than how they found it. Everyone has a story, strengths that make them special, and a place where they belong.

The world needs exactly who you were made to be and I am so glad that you exist!

To pre-order Sarah's book, visit https://nicelittleskiff.com/shop/

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