When My Daughter Asked If She Would Always “Be Like This”

She chattered away as I rubbed the gentle washcloth on her fingers, back and forth.

“My skin is redder than your skin is,” she commented, and I confirmed the obvious.

“Mama,” she asked me after a moment. “Will my skin always be like this?”

I felt the tightening within me at this simple question that holds so many intense feelings, so much uncertainty about the future. In our daughter Brenna’s nearly six years, we’ve always tried to be as honest as possible, because we believe – and hope – that it leads to a trusting bond between us and her. We have had hard conversations in her short time – conversations about pain, about respect for humanity (and lack thereof, as experienced by many personal encounters), about sickness and disease and death.

“Yes, you probably will have that skin forever,” I told her. “God created you, and he loves you, and you are so beautiful as you are. God makes people in all kinds of ways with different colors of skin and minds that think differently and bodies that can do different things.”

For our family, accepting reality helps us face reality, especially together, boldly and united. Just because that’s the way it is doesn’t mean that we can’t find the good in whatever it is.

I know it may very well be an uphill battle, likely with many more hard conversations. It may very well be a constant, battling for her self-confidence when the world is pushing against her.

We firmly believe there is positive and negative in every part of life, and it’s our choice what we decide to focus on – which largely determines the kind of life we build and the relationships we cultivate. For Brenna, even as she becomes aware of some of the limitations of her skin and how it feels, she also has an increasing enthrallment of the positive attributes of her condition.

Like the fact that, thanks to her body over-producing skin, any cuts or wounds she gets heal practically in front of our eyes. Small gashes are hardly noticeable by the next morning. And Brenna has become pretty proud of her extraordinary skin-making abilities.

And so it felt like a small but mighty victory when we finished up that bath routine, the one when she first asked about “having this skin forever,” while chattering matter of factly about her skin again.

“How does that make you feel,” I asked her carefully, casually, curiously, “having your skin forever?”

“I like it!” she declared. “Because I have super skin!”

We can view life through whatever lens we choose. Focusing on the positive doesn’t remove the difficulties, but it does ground us in God’s goodness, a firm foundation we can rise from to face challenges.

It is a continual conversation in our home, how different we all are. When Brenna asks about her skin, we talk about her parents’ differences, her brother’s differences, her classmates’ differences. Sometimes the world has a tendency to try to convince Brenna that she is “the different one” because of her unique outward appearance, but we know the truth. We choose to esteem God’s truth, that we are his masterpieces – every single one of us – created in his image and his likeness and his creativity.

We are all vastly different, which means rather than feeling isolated by our differences, we can actually find so much sameness in them. We are much more alike than different; we have much more to unite us than could ever divide us. 

Recently, we were driving, singing along to the radio, when Brenna piped up from behind me.

“Mom, it’s pretty cool that God gave me super skin.”

My eyes brimmed with tears…grateful for her innocent, yet powerful, observation.

“It is, isn’t it? He created you like you are so that more people can learn about him. How special is that?”

How special we all are. How loved and chosen and planned. Will we always be different? Yes. And that’s “pretty cool.”

“Look at Her!”

They are three words that I hear at least weekly.

I hear them at the park, at the museum, in the grocery store, at the mall.

“Look at her!”

Those three words exit the mouths of older toddlers, of elementary kids, of groups of teenagers, and even sometimes, unfortunately, of adults.

Those three words are directed toward my precious daughter, my four-year-old Brenna, who was born with a severe skin disorder that means her skin doesn’t work well and builds up too quickly, leaving her susceptible to infections and heat-intolerant and with an appearance that looks like a terrible sunburn all over her body.

Look at her? Look at that child who looks very different than you?

Yes, look at her. Look at her wide smile that stretches up as she laughs an ornery chuckle straight from her little belly that becomes infectious as you listen.cIMG_4573

Look at her. Look at her strikingly beautiful eyes that are the color of the Pacific Ocean on a clear day. Bright blue eyes that sparkle with joy and mischief, especially when she’s purposely bugging her brother or playing a game like hide and seek. Blue eyes that widen a little with anxiety every time she hears something about a doctors office or hospital because she is so worried about being poked with an IV or even getting her blood pressure taken.

Look at her. Look at her dance to her favorite songs, twirling her dress or raising her arms to “shake if off.” Look at the way she immediately begins nodding her head and upper body to the beat if she’s sitting down and hears music of any kind. Look at her sing along, her sweet little voice trying to keep up with the lengthy lyrics.

Look at her. Look at her determination at she tries something for the first time – usually a physical feat that most of her peers could do years ago. Look at her thrill at she rides down the slide at the park for the first time or climbs a set of stairs for the first time, so proud of being able to conquer that small but exciting accomplishment.001

Look at her. Look at her as you listen, to those words of compassion coming out of her mouth as she asks why the little boy crying on the other side of the room is sad or why the woman at the grocery store doesn’t feel well.

Look at her. Look at her excitement about being at the playground, or the library, or even the store – wherever you are seeing her, she is excited to be there… to be around other people, to play with other kids, to experience something new in a social setting.

Look at her. Look at the way she gives her parents a questioning expression as they explain to the fifth person that day that no, she was not terribly sunburned and yes, that’s how she was born. Look at the way she asks what’s wrong when her parents have to tell a nearby child to stop being unkind when they see him or her pointing and using words like “weird” or “creepy.”

Look at her. Look at her tenacity each new day. It is often masked as pure four-year-old stubbornness and is the kind of tenacity that makes her mommy pull her hair out now but also feel relieved inside that she will give people a run for their money when she is older. A tenacity that offers her parents hope and expectation that she will stick up for herself and walk with self-assurance through the years.cIMG_7395

I can’t show you all of these things when you simply look at my daughter for the first time, most likely gawking over her peeling red skin, shiny from lotion. You’re not the first one to look, and you won’t be the last.

But I hope that you know there is much more to Brenna’s story beyond your first curious glance. There is much more to this person in front of you than what you first see. So next time, whether it’s my daughter or someone else who appears different than you do, please look a little more.

Cover3DMy book, A Different Beautiful, is now available for order!

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