I have the privilege today to have a guest post by a wonderful mom named Courtney Westlake. I read Courtney’s blog before we officially met, when I was dealing with the facial differences of Joel. Her posts were such an encouragement to me, and you can read more about her family here, http://www.courtneywestlake.com/
I love her insight and wisdom in bringing up two beautiful children, I hope you are blessed by this post today.
“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 four years ago, joining her big brother Connor (who is now 6), 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.
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 have chosen to face the world head on, proud of our daughter, proud of the way she looks, and hoping to help others understand why she looks the way she does and to join us in recognizing 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 mocks different, we have found God’s beautiful creation in our differences and are learning to glorify his awesomeness through our distinct personalities, talents, and yes, 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.
Courtney has recently published a book called A Different Beautiful, that will be released August 1st from Amazon. It is available at this link, http://CourtneyWestlake.com/ADifferentBeautiful for preorder.