“Blessed By Brenna”
by Courtney Westlake
There’s a common phrase that people use when describing something unexpected: “our world was turned upside down.”
But that was not the case with the birth of our daughter.
Our precious daughter, Brenna, a much-anticipated addition to her big brother Connor, was unexpectedly diagnosed immediately following her birth with…
a very rare, very severe skin disease called Harlequin Ichthyosis.
Two words that took me days to be able to say, and two words that altered our lives forever. Those two words meant that our daughter’s skin didn’t work, and that she may not live more than a few days.
Brenna was born with thick plaques of skin split by deep red fissures… skin pulled so tightly that her fingers and toes were shortened, her eyelids and mouth were pulled inside out, and her nose and ears were barely visible.
Brenna’s body can’t form her skin correctly, so it tries to make up for that by making too much skin. Her skin is dark red, dry and thick, and flaky – giving her the appearance of a sunburn over her entire body.
Brenna’s skin 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 even sweat to cool herself off, so hot temperatures can be dangerous for her.
Our hearts were aching with the pain she was enduring, with fear of the future and with the emotions and tears my husband Evan and I cried constantly. But our world was not turned upside down.
When something is turned upside, it falls apart. When it is upside down, it is destroyed and cannot be rebuilt. When liquid is upside down, it pours out and you can’t fill your cup back up. When a Lego tower is turned upside down, the pieces fall off, crash and break apart.
But our world? It was shaken up. When something is shaken, only the strongest pieces remain standing, and the weak pieces fall apart.
With Brenna’s birth, the strongest pieces of our lives remained – our marriage, our relationships with our family and friends, our home, our jobs and our community support. The most important priorities not only remained but grew stronger.
And Evan and I began to recognize how unimportant the weak pieces were that fell off – pieces of our lives that were not priorities, pieces that didn’t matter.
I think, in every situation we encounter, God gives each of us the opportunity to rely on him.
What God has promised us is to be there for us, always. In times we may not understand and in ways we might not understand, but he is there.
And it’s not always easy for us to relinquish this control. We try to plan, and we try to control, and we try to understand why.
But when we rely on God, we can hold on tightly to him when our world is shaken up.
When I began to trust God after Brenna’s birth, to wait for his guidance instead of demanding to understand why, eventually it became clear to me that there was a detour in my life’s plans…to a new road that God had chosen for me.
Life may look very differently now than I had originally envisioned or planned. We have had so many challenges with Brenna’s health care, and because her condition is life-long with no cure, we dedicate a lot of time each day to her skin care.
But I have realized, by stepping back to wait on God, that I was once grieving the loss of my own plans…and that grief was keeping me from living the life that God had planned for me.
Our world was shaken up when Brenna was born, but God gave us something amazing: With the strong pieces of our lives in place and the weak pieces gone, we had a much clearer view.
With that new view, each day we discover more about the incredible beauty around us. We discover just how beautiful different can be.
Courtney Westlake lives in Springfield, IL, and is wife to Evan and mother to Connor (4) and Brenna (2). She is a writer, author and photographer, and writes Blessed by Brenna, a blog that details her family’s lives after Brenna’s birth. She is also the author of Christian children’s book, “That’s How You Know”. You can keep up with Courtney and Brenna by following her on her Facebook as well!