When Courtney Westlake’s family was given the shocking news that their daughter, Brenna, was born in 2011 with a severe, life-threatening skin disorder, they began to discover a new and different beautiful in their lives–one that values extraordinary differences and appreciates the wonderful sameness found in humanity. In A Different Beautiful, Courtney explores what her family has discovered in raising a child with physical differences and what she has learned about true beauty. Through her personal insights and experiences, Courtney shares how you, too, can learn to find and celebrate God’s version of beautiful in your life, especially within our differences and struggles.
|Publisher:||Barbour Publishing, Incorporated|
|Product dimensions:||5.00(w) x 7.90(h) x 0.90(d)|
About the Author
Courtney Westlake lives in central Illinois with her husband, Evan, and two children, Connor and Brenna. When Brenna was born in 2011 with a rare and severe skin disorder called harlequin ichthyosis, Courtney began a blog to chronicle their family life and experiences raising a child with physical differences and special needs. Her writing has also been featured on other sites such as Yahoo Parenting, The Huffington Post, (in)courage, and Good Housekeeping. Besides writing, Courtney enjoys photography, traveling, and a good bag of Doritos.
Read an Excerpt
A Different Beautiful
By Courtney Westlake
Barbour Publishing, Inc.Copyright © 2016 Courtney Westlake
All rights reserved.
Pink Nail Polish
I sat my daughter, Brenna, up on her changing pad as snapped up her outfit after a diaper change. And as she looked around, chattering, her eyes fell on my feet, with toenails painted in deep pink.
"Ow?" she asked, associating the color with blood and a hurt toe.
"No, not ow. Mommy put a pretty color of paint on my toenails," I explained as best I could in toddler language — also beginning to think that the concept of painting nails sounded a little ridiculous as I attempted to describe it.
I showed Brenna my nail polish bottle, and then, of course, she pointed to herself. "Me!" she exclaimed, and her underdeveloped speech made it sound more like "Neigh!"
I had never painted Brenna's nails before, though she was two and a half years old at the time. I had really never even thought about painting her nails.
Brenna's toenails are a product of a rare skin disorder she was born with, a diagnosis that came as a shock to everyone after a typical pregnancy; her nails grow in such a solid, thick yellow that there have been times we've had to trim them with side-cut pliers.
Like her skin, Brenna's nails grow way too fast — an effect of a mutated gene. This single mutated gene means the top layer of her skin has trouble doing its jobs.
And with her diagnosis at birth, there were some things that I, as her mother, realized might never happen — mother-daughter traditions I envisioned for months when I heard the ultrasound tech utter, "It's a girl," that seemed lost to the staggering severity of Brenna's life-threatening condition.
Things like putting on my daughter's makeup for school dances. Things like curling my daughter's hair for a family picture.
And, so I thought, things like getting our nails painted together.
I balked just for a second before courage set in. I could have said no. But my husband and I have decided we're not really in the business of saying no in the face of the unknown anymore. We'll have to tell Brenna no enough as it is, when her body simply won't allow for something. So we refuse to say no simply when we're nervous or scared.
I didn't know exactly how her nails — thick but sensitive — would react to polish. I worried about the polish getting on her skin and causing an adverse reaction.
But as her bright blue eyes begged me to open the bottle, I said enthusiastically, "Yes, let's paint your nails!"
As I carefully applied the pink color to her two big toenails, Brenna leaned over my arm, watching intently.
"Wow!" I exclaimed as I dabbed a final spot, waiting for her reaction.
"Wooo-ow," she whispered slowly.
Two brightly colored toenails, one on each foot. And the admiration that followed — the beaming as she held up her foot in the light that streamed in from the window.
The kind of admiration that made five minutes of painted toenails come to life in a celebration. I slowly realized the magic we were creating in those five minutes and in the moments that followed as she proudly showed off her pretty pink toes for the next week, extending her foot to nearly everyone she came in contact with.
Even if her toes were covered by socks, she knew how beautiful they were underneath, and she wanted to make sure everyone else knew, too.
It had nothing to do with the polish or the color. Rather, it was all about how she felt about herself. The way she felt as we painted together — loved and special. The way she felt around others — admired and engaged. Brenna felt beautiful because she was living in joy, in celebration, with those around her.
Since Brenna's birth, simple celebration is what we have discovered for ourselves, in and around some very hard parts of life. From the beginning, there have been what feels like endless doctors' appointments with more specialists than I have pairs of shoes.
Therapy sessions have packed our weeks so we can push Brenna to learn how to do the tasks that come so easily to other children — movements like pulling up on the couch, crawling, holding wide objects, and walking on different surfaces that are a whole lot more difficult when your skin doesn't flexibly stretch.
Simply enrolling in preschool instigated a multitude of meetings with nurses and administrators and therapists and teachers, along with health plans and other preparations, to ensure Brenna would be safe, healthy, and comfortable in the new school environment. And on the day I walked through those doors without her, I felt a bit helpless in my mommy heart, relinquishing Brenna's health routines to strangers and trusting them to care for her like I had for the last three years.
We have tried medication after medication just to see what might work.
We have had sleepless nights on end as she has gone through typical baby issues, like teething, on top of skin problems like uncontrollable itching. And she has endured hospitalizations when painful bacteria found its way into her skin.
In the whirlwind of four years, there have been so many kinds of things that you never expect to experience when you bring a child into the world or dream of times spent with her.
But with that has come a joy-filled life that we also never expected, the kind of overwhelming richness that is beyond comprehension when you have focused on washing tiny pink clothes in Dreft and making a list of what to pack in your hospital bag and stocking your freezer with post-baby meals.
Because even on the worst days, we can find beauty. Even when things don't look so wonderful, we can discover beauty somewhere.
Beauty extends from all pieces of our lives, just waiting to be noticed, to be appreciated, to be celebrated. And what our family has discovered after the birth of Brenna is that the best kind of beautiful — the truest beauty that God intentionally and lovingly created for us — is not only seen but also felt.
The most dazzling beauty in this world is not found in the magazines or even seen in the mirror. It is felt deep within our souls, and it is released to those around us in the forms of love, kindness, compassion, and generosity.
In a version of myself that I can hardly remember, I once believed beauty was something you strove for, something attainable that could be seen by everyone. But there is a different beautiful than the perfection our culture often worships.
That beautiful is found not when we open our eyes but rather when we open our hearts. That different beautiful is found in the uniqueness God has bestowed on every single one of us and the gifts He has placed within us to be shared with the world, if we choose to trust in Him and tell His story with our lives and our gifts.
Sometimes the most beautiful things even come from the unexpected parts of life that encourage us to search a little harder to find where the beauty lies — to put aside preconceived notions about what beautiful is and what it isn't and let the feelings of beautiful settle deep into our souls.
That is precisely the kind of beautiful, however, that brings into sharp focus the pieces of life that we may not otherwise celebrate.
Moments of kindness can get lost in the everyday rush. The opportunities to help our neighbor, to listen — really listen — to a dear friend, or to serve a stranger often pass us by as we wrap ourselves up in errands, to-do lists, and obligations.
How many times do we miss a chance to talk on a deeper level with our children because we are preoccupied with the next part of the day? How often do we notice people and make a snap judgment about them without opening our hearts to really getting to know more of their story? How often do we say no to using our God-given talents to enrich the lives of those who need help or those who are less fortunate because it feels too uncomfortable?
There is a whole new kind of beautiful to be discovered when we stop closing our eyes and our hearts to what is unfamiliar or unexpected. When we can focus on the goodness we are feeling rather than seeing, we can learn what it truly means to celebrate beauty in life — the joy, the passion, the deep relationships with each other and God, the dazzling, fleeting moments in front of us that might not otherwise cause us to pause.
Like painting with pink nail polish.CHAPTER 2
Time to Meet Our Daughter
Do you think I should go?"
My husband, Evan, was scheduled to travel to Indianapolis with a colleague for business that morning, December 19, 2011, a Monday.
I had been having Braxton Hicks contractions for a few weeks, so even when the contractions moved down into my back and intensified that previous night, they weren't at all regular or persistent enough to cause either of us to believe our baby daughter was on her way. Our two-year-old son, Connor, had been induced a week late, and my labor was a long, intense process, so we were not expecting an early arrival, especially four weeks before my due date.
Evan rolled over that morning as his alarm clock sounded at 6:00 a.m. and asked how I was feeling.
"I slept on and off, and a couple of contractions did wake me up," I admitted. "But they're still so sporadic."
I told him it was probably fine to leave, and he ultimately decided to make the three-hour trip. He showered, loaded up his stack of bank papers, and headed out the door, making me promise to call him if anything changed. I followed suit with a shower, and I even took the time to curl my hair with hot rollers, thinking that if I was going to go into labor, I wanted to try to have a slight improvement over the beat-up look I sported in Connor's arrival photos. I had pushed for two long hours on my hands and knees, which left me swollen, with popped blood vessels on my face.
I turned on some videos for Connor and began to feel a bit of anxiety as I timed my continuing contractions, but they were still not regular at all. Emotions began spinning through my head with the thought that I might be holding my daughter in my arms soon. Excitement, worry, and nervousness swept through me, and I became so aware of my heart pounding quickly in my chest ... Could this really happen today? I watched Connor for a couple of minutes, reflecting — as it seems common to do with the impending birth of a second child — on the fact that he was not going to be my only baby anymore.
I was not, however, feeling overwhelmed or overly anxious, the kind of overwhelmed you might usually feel as you debate whether you are truly in labor and what your next steps might need to be. Overwhelmed was at the top of my list of emotions with my firstborn's experience, so I was surprised to find a sense of calm to accompany my excitement, even as I considered the prospect of giving birth soon.
Eventually, I called my doctor's office and explained to the nurse what I was experiencing.
"It sounds like your body is trying to get ready for something!" she told me cheerfully.
She instructed me to head to the hospital if the contractions started coming regularly at about four minutes apart, so I called Evan and relayed this information to him.
A half hour later, I was making the bed when a contraction came on that was strong and intense enough that I had to lean against the bed to get more comfortable. I felt a huge amount of pressure, almost like I should start pushing, and I slowly made my way to the bathroom. I had just reached the bathroom tile when the pressure released, leaving me standing in a huge puddle.
For a split second, I was confused, and then it dawned on me: my water had just broken.
Our baby would be born today.
The fluid continued to stream out, giving me no choice but to awkwardly stride around my room with a towel between my legs, trying to remember what I should pack in my hospital bag. Evan was my first call as I informed him of this latest update — almost nervously giggling about the timing. At nineteen miles away from Indianapolis, he had to tell his colleague to make a U-turn at the upcoming gas station.
Connor wandered into the bathroom at that moment and pointed down to the growing puddle. "Mommy, clean it up."
My nervousness eased for a moment as I laughed at his two-year-old concern over the mess.
I quickly made calls to my mom and my mother-in-law, but they didn't answer. I panicked a little, forgetting when exactly I should go to the hospital after water breakage. I finally reached my dad, who headed over to our house to stay with Connor.
It was more than a little embarrassing to open the door for him, towel still between my legs.
"Sorry, Dad." I laughed, and he, looking everywhere but at me, told me to return to the bathroom and quit trying to pack. Thankfully, my dad deluged my mom with phone calls and finally was able to reach her and pull her out of a meeting.
Mom charged into the house as I was placing things into my hospital bag, pausing every so often for a contraction. With four weeks to go until my due date, packing a bag for the hospital was a check mark still waiting to be made on my birth list. The only thing that was folded in my black hospital bag was a tiny newborn sleeper I had picked out weeks earlier, which read "Daddy's Girl" among pink, green, and turquoise polka dots.
Though I was in active labor, I still felt the need to be as prepared as possible for an overnight stay, so I began shoving in T-shirts and sweatpants, deodorant and makeup, nursing pads and a pillow — as if no one could have brought me any of these things.
"We need to get going, honey," my mom insisted after a particularly strong contraction. "They're starting to come closer together, I think!" My mom seemed to be more observant of the timing of the contractions than I was, pulling me out of my need to control this surprise situation.
Twenty minutes later we reached the hospital, and after I got situated, I began asking for my epidural because I am not one of those women who wants anything to do with enduring more pain than I have to. And I knew from my prior birth experience that things can get pretty ugly pretty quickly.
Unfortunately, anesthesia was moving a little slow (aren't they always?), and I started clutching the hospital bed railings and trying to breathe like in the movies with every onset of a contraction.
When the doctor finally came, that enormous needle brought sweet relief, and the nurse checked my progress immediately following the epidural.
"Eight centimeters!" she declared, and I felt a tiny burst of pride that I had made it that far with no medicine; maybe I was not as much of a sissy as I thought.
With the comfort of an epidural, I updated my Facebook status from my iPhone: "In labor at the hospital ... looks like we'll be getting an early Christmas present!" Friends began to leave comments of well wishes and "Can't wait to see photos!"
My own doctor, Dr. Brown, was not on duty at the hospital that day, but I immediately liked her partner, Dr. Klein, when she introduced herself and began to monitor my progress.
"We're going to have a baby within the hour!" she announced to me and my mom. I was very surprised by this prediction, just two and a half hours after my water broke.
My mom continued to keep Evan updated and check his location, and eventually he rushed through the door of my hospital room, laughing about the craziness of his morning travels.
My nervous excitement then turned to an almost surreal elation. We're going to have a baby soon!
Less than a half hour later, it was time to meet our new daughter.CHAPTER 3
"It's Her Skin"
Evan had been convinced from the start of our pregnancy that the new baby would have two X chromosomes. Because I had guessed we would have a girl with my first pregnancy — only to be surprised when the sonogram tech drew a little baseball hat on our picture — I felt I really lacked mother's intuition in that department and wouldn't venture a guess the second time around. But I was simply so overjoyed to be pregnant again after nearly a year of trying that even the constant nausea through about the first eighteen weeks — and even sometimes after that — didn't deter me from wanting to savor every little thing about growing a child within me.
I knew, based on Evan's feelings on the subject, that this could be our last child, and I never took my hand off my growing belly, wanting to feel each flutter of movement and twinge of growth. It was not an especially easy pregnancy, between constant nausea and sciatic nerve pain in my last few weeks that left me hardly able to walk, but I never wavered in my gratitude to simply be pregnant.
Connor began to laugh at the way my belly button popped out, playfully pushing on it each time he noticed it. We moved him into his big boy room with a new red-and-navy-striped bedding set, and he started to call his old room "baby's room." I ate my way through each week, picking up steam as I felt better and better. And our list of names was forever changing, as we added and deleted and prioritized. Jaclyn, Leah, Charlotte ... I kept discovering new names that I loved, but we wanted to meet our little girl before we gave her a name, just as we had with our Connor William.
At week twenty in my pregnancy, we had the typical sonogram, and everything was measuring as expected. Evan pressed the nurse, asking almost immediately if she could tell the sex, and she replied that she could. Did we want to know?
Excerpted from A Different Beautiful by Courtney Westlake. Copyright © 2016 Courtney Westlake. Excerpted by permission of Barbour Publishing, Inc..
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Chapter 1 Pink Nail Polish 9
Chapter 2 Time to Meet Our Daughter 17
Chapter 3 "It's Her Skin" 23
Chapter 4 Redefining What We Know 29
Chapter 5 Holding On to Hope 39
Chapter 6 "Praise Him When We Win; Praise Him When We Lose" 47
Chapter 7 What a Difference a Day Makes 55
Chapter 8 Pigtails 63
Chapter 9 Chasing Normal 71
Chapter 10 Blinders 79
Chapter 11 Putting Down My Shield 89
Chapter 12 Everyone Understands a Smile 101
Chapter 13 "Why Does She Look Like That?" 111
Chapter 14 Accepting Beautiful in Your Life 119
Chapter 15 From the Inside Out 129
Chapter 16 Acceptance without Pity Means True Understanding of Different 137
Chapter 17 Puzzle Pieces 145
Chapter 18 Turning Our Eyes from the Mirror to Others' Hearts 155
Chapter 19 Using Our Differences as Gifts for the World 163
Chapter 20 Laundry Stains 171
Chapter 21 When Faith Means Trusting and Waiting 179
Chapter 22 Only as Limiting as We Make It 189
Chapter 23 More of the Same Than Different 199
Chapter 24 Telling Stories of Beauty with Our Lives 207
Chapter 25 The Cycle of Celebrating Beautiful 215