When our daughter was first born, I just thought she needed to be wiped off.
She had a thick whiteness covering her entire body, and there was a sort of confused panic from the medical staff in the room. She was whisked out of our room almost immediately and taken to the nursery before being transported to the nearby neonatal intensive care unit.
Somewhere in all of the confusion, we realized that she couldn’t simply be wiped off. The thick covering on her was her skin.
When Evan and I found out we were expecting a daughter, who would be joining our then-1.5 year old son Connor, we were elated. One boy and one girl seemed to fulfill a sort of ideal expectation for our family, and Evan couldn’t wait to have a Daddy’s girl with bouncy pigtails.
Brenna Helen Marie arrived on December 19, 2011, and shook up our whole world. She was diagnosed with a rare and severe skin disease called Harlequin Ichthyosis (har-la-kwin ick-thee-oh-sis). Her skin was formed in thick plaques with deep red fissures in between, pulling so tightly across her body that her fingers and toes are permanently shortened, her eyelids were flipped inside out, and her nose and ears were almost completely covered by skin. (Read more about Harlequin Ichthyosis here.)
It took about two days before I fully realized how severe her condition was and that it was likely that Brenna may not make it. On Christmas Eve 2011, when Brenna contracted an aggressive blood infection, we begged God all night not to let her die on Christmas as we sat anguished by her bedside, wondering when we would have to say goodbye, wondering if we would even get a chance to hold our baby girl before she went to heaven.
But Brenna fought through that infection, and she has battled through multiple surgeries, skin infections, hospitalizations, and many other challenges caused by this severe condition, from motor delays to food intolerances, in her short life. (Read a 5-part series about Brenna’s birth and first week of life here.)
Harlequin Ichthyosis is a genetic condition, and there is no cure. It has profoundly affected our lives, as we constantly monitor for temperature (Brenna can’t sweat) and try to minimize infection risk. Our days are filled with applying Aquaphor to keep her skin moisturized and comfortable, a long daily bath where we can exfoliate the extra skin she makes, and lots of eating because Brenna’s body uses so many calories simply to produce skin!
At four years old, Brenna is the size of an 18-month-old, with deep-reddish skin that constantly peels. She has very little hair because the over-production of skin kills off her hair follicles. Her extremities and some of her features are tiny because her tight original skin didn’t allow them to grow.
Because of this, we encounter a lot of stares, questions and ignorance from people who assume we “let” her get severely sunburned.
But our days are also full of uninhibited joy, real contentment, gratitude and faith in God. Brenna is determined, extroverted, and sweet and sassy all at the same time. She is so attached to her parents and shares a unique bond with her brother – they are each other’s biggest fans.
Physically, Brenna is much different that we expected. And we are discovering day by day, week by week, just how beautiful different can be.
Read more about our journey and discovering the tremendous beauty in all that is different and unexpected in my book, A Different Beautiful, releasing August 1.