I wanted to interject into the conversation occurring a few feet away from me. I wanted to explain and to defend, but I held back.
I waited to hear what my children would say to the little girl who had just asked about my daughter’s red, peeling skin.
“She has a skin addition,” my son, Connor, informed her. I had to hide my smile over his error, as he obviously meant “skin condition.” But then, as I thought about it a little more, skin addition is pretty accurate too – my daughter, Brenna, has a rare genetic disorder called Harlequin Ichthyosis that means her body produces skin too quickly. Her skin also has trouble with things like maintaining her body temperature and resisting infection.
Brenna then chimed in with a simple “Yeah!” and the little girl all but shrugged, like that explanation was good enough for her, and continued playing next to my kids.
I know I could have offered more information. I could have explained that was how Brenna was born, that she has really dry skin, that she has to wear lotion that makes her a little shiny, that this was how God created her.
But if I had jumped into the conversation, might I have made the little girl feel badly for asking or maybe attracted unwanted attention for Brenna? Would I have conveyed defensiveness to my daughter instead of assurance in Christ about who she is and how she was created?
One of my greatest motherly desires is to instill autonomy, self-respect, and strength within my children. I want them fly out into the world with responsibility and confidence and a deep sense of who they are as beautiful and unique people created by one very awesome God. And when it comes to Brenna, who faces the world with such physical differences, I have been resolving to continue stepping back so that my child can soar instead of sheltering her.
- I will equip her instead of defend her. I know my daughter will face all kinds of public reaction to her skin differences, whether I am there or not. People tend to point, stare, and ask questions about her appearance and condition wherever we go. So I’m grappling with giving her what often feels like less advocacy, but what I hope will be the best kind of gift: the opportunity to answer for herself. Instead of teaching her how she should feel, I can equip her with encouragement, support, and most of all, a true identity in Christ, as she steps out into this big world.
- I will demonstrate grace for her. Every day, we encounter opportunities to explore what grace looks like as we offer grace to others who are ignorant about her condition, as well as opportunities to respond in kindness even when others aren’t quite as kind to Brenna.
- I will empower her to write her own story. As her mother, my story feels very different than hers; my story often feels more protective and defensive. And I am very aware that many experiences are much harder on me than on her because of this. What Brenna will feel as the object of stares and comments will be very different than what I feel as her mother… and I hope that we can both support each other in every new situation and season of life as we strive for the kind of grace-filled advocacy found in living out God’s purpose for our lives.
One day after school, Brenna came home sharing about a new little boy who had just joined her morning preschool class. He had, she told us, pointed at her and said, “your face is red.”
When we asked her how she responded, she told us confidently: “I said ‘yes!’”
No shame, embarrassment or offense. Just an observation, and an affirmation: Yes, that’s how I look.
With that confident one-word answer, my daughter showed me how to hold tight to the assurance of our Father’s life-giving love for us, as we have all been formed in His image.
Courtney is the author of A Different Beautiful. She lives in Illinois with her husband Evan and two children, Connor and Brenna. After Brenna was born with a severe skin disorder, Courtney began chronicling family life and experiences raising a child with physical differences and special needs on her blog. Her writing has been featured on sites such as Good Housekeeping, Woman’s Day and Yahoo Parenting. You can follow her on Facebook and Instagram.