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.”

What I’m Into (October/November 2017)

The first time we got the fire going this year (OK fine, by turning on a switch), it was like a long, deep breath exhaled.

My friend Tara and I had lunch the other week, and she told me how grateful she was for the approaching winter season. I hear so many complaints about the frigid temps of winter, so this was a refreshing perspective. “It feels like the year is making you slow down. It’s dark and cold, and you just get a chance, between the warmer seasons that have so many activities, to relax and sit with your family in front of the fire,” she said.

You may have noticed my blog has been a little quieter lately. Or maybe not; with the flurry of information on social media these days, I’m certain no one keeps very close tabs on this page anymore.

It doesn’t mean I haven’t been thinking about blogging or personal writing; I probably overthink it, actually. But with my kids both in school full-time, the last few months have given me a chance for more self-reflection than I’ve had the last 8 years, and I’ve been sitting in sort of a middle ground, wondering where I’m headed next.

So this past summer and fall, I’ve been living instead of writing about living. And with winter coming, I’m still in the in-between but feeling hopeful and grateful for the moments of living, big and small. Whatever is ahead, the year is exhaling, and for now, I’m going to cherish sitting with my family in front of the fire…

In front of the fire with a Stegosaurus and Curious George on October 31 🙂

Here’s a roundup of some things that have going on in this neck of the woods…

I hit the summer hard with an abundance of light reading – lots of fiction, plenty of YA novels. Which worked well for the warm season. When fall settled in, I drifted into deeper, slower reads, mostly nonfiction.

I just finished I Was Told to Come Alone, written by Souad Mekhennet, a Muslim journalist for the Washington Post. She shares an extremely unique perspective from interviews “behind the lines of the jihad,” and it helped me to understand better many of the world issues today. I also recently completed Evicted, which was a journalistic delve into poverty and eviction in Milwaukee.

Currently, I’m in the middle of Enrique’s Journey and The Longest Road, and next, I’d like to start Just Mercy, which comes highly recommended.

I’ve also been making it a bigger priority to read aloud with the kids. Sometimes during school days, it’s easy to let that slip, but it’s something that we all enjoy so much, and listening to the Read-Aloud Revival Podcast has been a catalyst for prioritizing this!

This story by my friend Ginger is just INCREDIBLE. She shared it with me when it first began and updated me over time, and I couldn’t wait for her to write about it. I know it will – and already has – change many lives.

“We find friendship with the heart; not the eyes. I have found that teaching acceptance, compassion and kindness must be intentional. As a parent, this can be done by not missing out on an opportunity to have your children interact with someone who is different. The more they are exposed to different, the less it becomes a big deal. Children can learn to see ‘different’, and look past the outside and see the heart.” This post by my friend Stacey is absolutely a must-read.

I had the pleasure of being featured on the podcast Orange Socks, which offers support and encouragement to special needs parents across the globe. I think it’s is so important for us to share our stories, to help our fellow parents find hope and not feel isolated, and after browsing the stories on Orange Socks, I felt so uplifted. You can listen to my interview here.

Someone was THRILLED to lose her first tooth!! She’s been dying to lose a tooth for years – thanks to her big brother’s prolific teeth turnover rate. She would ask me for apples and carrots when it got loose, to help the process along, and she finally wiggled it out while on a field trip!

Connor’s Cub Scout troop got to experience our local hospital’s air evacuation team and helicopter landing in our town. All the kids were able to try out the helicopter – and OK, some of the parents may have also jumped at the chance to sit in it too…

In October, for Neonatal Intensive Care Month, I was honored to have the opportunity to team up with my friend and fellow NICU mom Stacy and her nonprofit Triple Heart Foundation. I donated my children’s book That’s How You Know for care packages to the NICU families. It was a surreal feeling to be back on the NICU floor; I hope that we were able to provide a little light into the day of another NICU family with our delivery.

A certain someone in our family has a favorite song: John Deere Green by Joe Diffy. So when we got to ride on a John Deere combine during fall harvest, she was totally thrilled!

May these darker days of winter bring peace and relaxation – and lots of family time in front of the fire!