How to Tell Your Story
The little girl leaned close to my daughter’s face, intently staring at her features and her skin.
Then she jumped back and looked over at her mom with wide eyes.
“Her is creepy!” she declared.
My heart tightened in my chest at her words—it wasn’t the first time I’ve cringed or fought back tears at someone’s reaction to my four-year-old daughter Brenna’s appearance, and not the last, I’m sure.
The red color of Brenna’s skin is what people usually notice first about her, a deep red that stands out among the shades of cream and brown we typically see around us. Many assume that she has been sunburned, because that is what it looks like, but Brenna was actually born with a severe genetic skin disorder called Harlequin ichthyosis that affects the top layer of her skin.
Brenna’s disorder means that her skin has trouble doing its jobs for her body – essential roles like keeping bacteria out (so she can get skin infections easily), retaining moisture, and maintaining her body temperature; she can’t even physically sweat. Her skin regenerates ten times too fast, and she can’t shed it that quickly, so it builds up and is constantly peeling.
She is the frequent recipient of stares, pointing, and questions. It’s not unexpected because her appearance is unique and takes people by surprise.
But we also get very appalling reactions. Some people use harsh words to describe our daughter and her skin.
Still, my husband Evan and I don’t talk about it much. I don’t usually write about specific comments people make on my blog or social media, or discuss them with my friends.
Why? Not because we are trying to hide it, but because it’s not the part of Brenna’s life that I want her to focus on or that I want our family to focus on.
Negativity isn’t what I want written into our story and lived out daily.
We don’t necessarily get to choose what happens to us or what people say to us, or even what people think about us, but what we do get to choose is how we react. How we share ourselves with others. What kind of heart and mind we are going to project out into the world.
[Tweet “You get to choose how you tell your own story.”]
This is different than altering our stories for social media in an effort to appear happier or more “together” than we actually feel. Telling a better story with your life means redeeming the messes, not hiding the messes.
Of course, this doesn’t mean that some days or decisions aren’t more difficult, or that life is easy and carefree. Not at all. But when we allow the negativity of others to overtake our stories, we start becoming victims rather than heroes.
Life is so much more fulfilling when we decide to step alongside God and share his light within us with the world. When we decide to try big things together with him. When we choose to redeem a negative situation or harsh word for his glory.
Yes, God is the all-knowing author of our story, but we are the co-author of this one story we have, too.
When we rely fully on him as our guide, waking up each day feels like hearing him saying to us, “So what should you do today to live out the gifts that I gave you and to share me with others?”
While God’s sovereignty makes his timing and his purpose absolutely perfect, let us not forget that we have control over huge, meaningful pieces of our stories, especially our attitudes. We choose the gratitude and praise, the passion and humility with which we approach our lives every day. And those choices can be completely life-altering.
The first time we took Brenna and our son, Connor, to a waterpark resort, there were moments–far too many moments–that made my heart ache. Kids would stop and stare open-mouthed at Brenna, adults would turn around to continue looking at her, and a group of high school kids pointed and gawked with horrified expressions.
There were also so many other kinds of moments. Joy on the little water swings. Excitement over a new swimsuit. Laughter watching cousins race on the water slides.
It was with those moments that we decided to fill up our hearts. It was those moments we used to tell our story, to share about our trip, that we remembered and talked about in the days and months after.
While unkind words and negative, unwanted attention to our daughter’s appearance can hurt very much, what I’ve learned is that those pieces don’t have to make the cut when it comes to how we choose to tell our family’s story and live out God’s love in our daily lives.
The Glorious Table is happy to welcome Courtney Westlake to the table today. Courtney is the author of A Different Beautiful (Shiloh Run Press, 2016), which aims to help the reader “learn to find and celebrate God’s version of beautiful in your life, especially within our differences and struggles.”
Courtney Westlake lives in central Illinois with her husband, Evan, and two children, Connor and Brenna. When Brenna was born in 2011 with a rare and severe skin disorder called harlequin ichthyosis, Courtney began a blog to chronicle their family life and experiences raising a child with physical differences and special needs. Her writing has been featured on other sites such as Yahoo Parenting, The Huffington Post, (in)courage, and Good Housekeeping. Besides writing, Courtney enjoys photography, traveling, and a good bag of Doritos. Learn more online at CourtneyWestlake.com and at the blog that started it all, BlessedByBrenna.com.
