I met Courtney Westlake shortly after my surviving triplet came home from the hospital. While our stories are very different, we share so much in common. We both faced the fears and emotions that come with a traumatic birth and Nicu experience. Her words of wisdom helped me tremendously as I navigated the early days of raising a baby with high needs. I’m honored to hand over my blog, so she can inspire you. And make sure to check out her new book, A Different Beautiful.
Guest Post By Courtney Westlake
When my daughter was 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 panic with the medical staff, but 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.
Brenna was born four years ago, joining her big brother Connor (who is now 6), in our family. She was taken soon after birth to the NICU of the nearby children’s hospital and diagnosed with a rare and life-threatening skin condition called Harlequin Ichthyosis.
Because of her condition, Brenna’s skin basically doesn’t work very 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.
Brenna spent almost 6 weeks in the neonatal intensive care unit, where we experienced every emotion possible, including an anguished Christmas Day as she battled an aggressive blood infection that nearly took her life. 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 have strived to be open about her condition, with the mindset 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 see the beauty in everyone’s differences.
Though Brenna’s skin has been a defining piece of her life and will continue to be so throughout her life, it is not the only piece of her life.
Naturally, there will always be stares from other people about her unique appearance, but I hope that Brenna and Connor will both have many opportunities to see that who they are, how they act and how they treat others are all so much more important than what they look like.
What Brenna has taught us is that our differences are wonderfully diverse and help to give our lives distinct purpose, but we must always remember that our differences are not more important than our sameness, which is our shared humanity.
There is no perfect, and there is no normal. But there is good, and what we have discovered is that good can be found everywhere, in every situation. It’s a constant decision we make to find the beauty of this good, even in the very difficult seasons of life.
Because of the gift of Brenna’s life, our family has been able to learn every day how to truly celebrate the beauty in the different and in the unexpected.
Courtney Westlake is author of A Different Beautiful. She is married to Evan and mom to 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. Her writing has been published on sites such as the Huffington Post, Good Housekeeping, Woman’s Day and Yahoo Parenting. You can follow her on Facebook and Instagram.
What an amazing story and your daughter is absolutely beautiful! I am the mother of a son with invisible difference, ASD (Autism Spectrum Disorder), and though our stories are very different, he has also led me to see that there is no normal. We are all beautiful, and have our own unique way of viewing the world. My son has taught this to me, and I now teach it to others about children who are physically and/or intellectually different or exceptional. Thank you for sharing!
What an amazing story a beautiful little girl that knows she is loved inside and out. God bless you for all that you are doing as a family to protect her
Maggie Ornberg says
Amazing story. She is beautiful. Hi Brenna and Peyton!!! ????????
Fantastic story. What a beautiful little girl. Thanks for sharing!
Brenna is so beautiful. Love her beautiful smile and the twinkle in her eyes. Love to hear about these two beautiful “babies”. Thank you both for sharing your stories and God bless you always.