\*Editor’s Note- This is a guest post from our good friend Courtney Westlake. She is the author of the newly released book A Different Beautiful. She lives in Illinois with her husband Evan and two children, 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. You can follow her on Facebook and Instagram.
When my husband, Evan, and I found out we were expecting a little girl, joining her big brother Connor in our family, we had a vision of pigtails. We pictured a little girl chasing her brother around the house, with blond pigtails bouncing on the sides of her head.
But on the afternoon of Brenna’s birth, four weeks early, that image of pigtails was torn from our minds. There was complete shock in the delivery room when Brenna was born; Evan almost fainted at the sight of her, and the medical staff frantically paged a neonatologist.
Brenna was covered in plaques so thick they almost looked like armor, which were split by deep fissures. Her eyelids were flipped inside out, her fingers and toes were short and clenched, and we could barely see her ears. Brenna was rushed to the nearby NICU and diagnosed with a rare and severe genetic skin condition called Harlequin ichthyosis.
With this condition, Brenna’s skin has trouble doing the jobs for her body that skin typically does: it doesn’t hold in moisture, it doesn’t keep germs out of her body – so she can get skin infections very easily – and her skin has a difficult time regulating her body temperature. She can’t physically sweat, so high temperatures are dangerous for her, and she gets cold very easily.
Brenna’s body recognizes this error in her genetics, so it tries to make up for that error – by making more and more skin. She produces skin around 10 times faster than we do, and she can’t shed it quickly enough, leaving her with an appearance of a severe sunburn all over her body.
Interestingly enough, another effect of making too much skin is that this kills off her hair follicles. When she was born, we could see clumps of dark hair grown into her thick plates of skin, but as those original plaques of skin began to peel off, they took her hair with them.
However, as Brenna got older, little strands of white-blond hair began to emerge. And her hair has continued to grow in, little by little, with small tufts on top and longer around the back.
Then one evening when Brenna was nearly three years old, I prepared as usual for her post-bath routine while Evan finished up removing the extra skin on her scalp. He was taking longer than usual, and just as I was about to ask if he was almost done, he called out to me from the bathroom with a laugh: “Come look at this!”
As I entered the bathroom, I peered into the tub to see him gently twisting tiny curly hairs near the base of Brenna’s neck.
And there they were: our little girl’s blond pigtails.
We laughed, and we took pictures, and we exclaimed to Brenna how beautiful her hair looked as she proudly patted her head. Suddenly, fashioning pigtails into our daughter’s hair became so much more special than we ever imagined.
As parents, we often have expectations about what our lives will be like, what our families will look like, and who our children will be.
Sometimes, when something is different than we anticipated or hoped for, it leaves us disappointed, confused or even grieving a loss. Too often, we tend to see things for what they aren’t – how something doesn’t look, how something didn’t happen.
Too often, we tend to see things for what they aren’t – how something doesn’t look, how something didn’t happen.
When my husband and I first thought about our daughter’s pigtails, the thought certainly didn’t cross our mind that she may not be able to grow much hair. And there was a time that we mourned the loss of her hair, along with the loss of many other things we expected about adding a little girl to our family that were changed with her lifelong diagnosis.
Yet, that one evening, when two tiny twists of hair emerged on her head to form pigtails, it wasn’t the kind of pigtails we imagined…. It was so much more beautiful.
Through these challenging years of raising my daughter and my son, 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. Parenthood 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.
What an incredible opportunity we have to get to know our children as they grow up, to learn who they are as God created them – with such unique talents, abilities, and purpose – and help guide them toward Him.
Sometimes, pieces of our lives look so different than what we expected that we don’t even notice how remarkable they actually are or how much they have actually changed us for the better. Parenting often doesn’t end up like what we had planned, but when we can see the beautiful in the unexpected and in the different, we can start to celebrate the joy of what is, instead of mourning what isn’t.
I am finding that when I am able to start letting go of the loss of my own expectations and plans, it is then that I am able to live more fully within the extraordinary life that God has planned for me… like celebrating the incredible beauty of tiny twisty pigtails.
Have you discovered a different beautiful on your journey as a parent? Share your story with us in the comment section below.
