MOMentous Monday — A Rare Skin Disease Reveals A Different Beautiful

guest post by Courtney Westlake, mom and author of A Different Beautiful

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Since I am only one person with my one story, I started a guest blog series called MOMentous Monday. For these specific posts I turn the mic over to a fellow mama and they share their personal story. I do this in hopes of reaching more moms in the trenches and offering hope by taking away the loneliness and isolation. There is something so beautiful and comforting in knowing you are not the “only one.”

Today, I will be sharing my little space with with a mama who also knows what it is like to fear for the health of her special needs child. I first met Courtney while on I was helping host ChannelMom’s radio talk show. Her story tugged on my heart strings and I have thoroughly enjoyed her book A Different Beautiful. Her bold faith, trust in God and ability to see all things for their true beauty is inspiring. Without further ado, Courtney Westlake… take it away!


“Look at her!” the little girl exclaims to her mother, sitting across from us at the doctor’s office, and I find myself tensing up a bit.

“She’s so CUTE!”

I smile, and inwardly, I am relieved that this child sees something wonderful in my daughter, instead of encountering her with an open-mouthed stare, brow creased with concern, like some children do – or even more difficult for me, a proclamation about how “red” she is or questions about “what’s on her face?”

My daughter Brenna was born nearly five years ago, joining her big brother Connor (who is now 7), in our family. Her birth sent panic and confusion through the hospital room as the medical staff tried to figure out what was causing her shocking appearance, and she was diagnosed soon after with a rare and life-threatening skin condition called Harlequin Ichthyosis.

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Because of her condition, Brenna’s skin basically doesn’t work well – it doesn’t keep her hydrated, doesn’t keep germs out (so she can get infections very easily), and it doesn’t regulate her body temperature; she can’t sweat to cool herself off, so hot temperatures can be dangerous for her. In her four short years, Brenna has endured multiple hospitalizations, infections and surgeries.

Because Brenna’s body can’t form skin correctly, it tries to make up for that by over-producing skin, leaving her with skin that is dark red, dry and thick, and flaky. It looks very similar to a severe sunburn over her entire body, and she wears a thick lotion to combat the dryness.

Since Brenna’s birth, my husband Evan and I constantly strive to be open about her condition, with the belief that ignorance is, in fact, not bliss. Ignorance can fuel cruelty, and we hope to help others understand why our daughter looks the way she does and to begin to recognize the beauty in everyone’s differences.

And yet, as we learn to appreciate and to celebrate our differences – our own and each other’s – it also serves as a great reminder that the God who created each of us with unique purpose and talents also created us with a likeness in his image. Where society often scorns what is different, we have found God’s beautiful creation in our differences and are learning to glorify his awesomeness through our distinct personalities, talents, and appearances.

Through these challenging years of raising Connor and Brenna, motherhood for me has become a journey of letting go of my own expectations so that I can truly understand and accept who my children are as God created them. Motherhood means the privilege and joy of discovering the child that has been gifted to me and getting to encourage and bring out the best version of who that child is, rather than pushing them to become the person I might have envisioned them to be.

As a mother, I’ve come to realize that it’s a choice, every day, to celebrate the good in our lives, even within our struggles. If we live our lives with resiliency and gratitude and purpose, then we can have the courage to tell our life’s story as one of triumph, love, and true beauty.

We are different, and we are the same – none of us perfect, but formed purposely by a perfect Creator. And there is nothing that offers more wonder to our world than the appreciation and celebration of that unique beauty.

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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. You can also follow her on Facebook and Instagram.

 

Please note: I reserve the right to delete comments that are offensive or off-topic.

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One thought on “MOMentous Monday — A Rare Skin Disease Reveals A Different Beautiful

  1. Thanks for sharing your story, you have truly been an encouragement to me this morning to just let go and let God! And your children are precious! I will remember your family in my prayers.