Perfectly formed (guest post from Courtney Westlake)
When my daughter was first born, I thought they just needed to wipe her off.
At first glance, she seemed to be covered with a thick coating of white, causing confusion and near-panic with the medical staff in the room. It soon became clear that the towel the nurse was using to clean her wouldn’t alleviate anyone’s concerns.
Because the white covering was her skin.
Our daughter Brenna (our second child and sister to our now five-year-old son Connor) was born in 2011 with a very severe, very rare genetic skin condition called Harlequin Ichthyosis (har-le-kwin ick-thee-oh-sis).
This severe disorder means that Brenna’s body has trouble with things like regulating her body temperature – she can’t even sweat – and keeping bacteria out, so she can get skin infections easily. It also means that her body produces skin about 10 times too fast, leaving her with very dry, peeling skin that looks like a sunburn all over her body.
Brenna’s condition affects our lives very profoundly every day and has caused the last three years to be filled with surgeries, doctor and therapy appointments, and a lot of health issues. But my husband, Evan, and I have never questioned why – we have believed from the very beginning in God’s plan for Brenna’s life.
We are often asked what is “wrong” with Brenna, with her skin or her face. But to be wrong is to be mistaken… and I don’t believe that mistakes happen with our awesome God.
When Brenna was just a few days old, critically ill in the neonatal intensive care unit, a family member came to us and said: “I haven’t talked to God in years… but I’ve been praying for Brenna.”
It was in that moment that I was assured that God had an extraordinary purpose for her life, and that he was bringing his children closer to him through our daughter and working through her to reach the hearts of others.
And, as I soon discovered, God was also working through me, by giving me the courage to stand up and say that my daughter is not wrong, she is beautiful.
God has given us the courage to find the beauty in this life, not the tragedy. We believe whole-heartedly that Brenna was given to us uniquely and beautifully created by God, not that she was given to us broken.
Within this, we are learning every day how to discover the beauty in the different and the unexpected. 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.
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.
We are different, and we are the same – none of us perfect, but formed purposely by a perfect Creator. And there is nothing wrong about that.
To read more of Brenna and Courtney’s story, visit her blog at www.blessedbybrenna.com.