What I Tell Myself in Moments When I'm More Aware of My Daughter's Differences

Usually, I don’t notice it. Or I adapt or ignore it. But sometimes situations show up that just make me so painfully aware of our differences. My son, Connor, takes weekly swim lessons, and these times at the pool make me all the more aware of our differences.

It seems innocent enough — kids walk around barefoot on the dirty tile floor, wet with pool water, with little fear of germs or infection. Babies in tiny bathing suits tolerating the cold water without a thought of discomfort or sickness.

child swimming in a pool

But this scene reminds me of our differences. My daughter, Brenna, was born with a severe skin disorder, Harlequin Ichthyosis, that requires special care.

The warm air in the pool area means I have to dress Brenna in short sleeves and take her hat off, her hair sticking out in sparse patches and greased up with  a special cream called Aquaphor. I’m constantly worried about how hot or cold she is, and all the while, I’m thinking, “For the love of all that is good, please DON’T TOUCH ANYTHING.”

It’s hard to shake off the stares at swim lessons. The wide-eyed watching from other kids too young to know they should look away politely. The second and third glances from other parents who don’t know that I notice out of the corner of my eye.

There are few situations that I think “I wish things were different.” But I look at the pool with envy. I wish I could throw a suit on Brenna and splash around with her without worrying about germs or water temperature. It’s simple and not important in the grand scheme of life, but that wish is there.

Swim lessons make my heart just a little sadder. Some weeks, I just avoid everyone for fear of tears falling if someone looks at us the wrong way or says something about Brenna’s skin. So I usually look down and don’t meet the eyes on us.

I wrestled with myself about whether I was feeling shame, and I am not. I’m proud of my daughter and I wouldn’t change the way she looks for anything. I would make her more comfortable if I could but certainly not change her appearance. I love the way she looks. Because it’s her.

Courtney's daughter

Sometimes, though, I just feel extra sensitive about it all — just a little more worn down by life with a rare disease, just a little more aware of the stares.

There will always be swim lessons in our life – situations where we are just more aware of our differences and a little sadder about our challenges. It’s my hope to instill the confidence in my kids to shake off the swim lesson in life and move forward with their heads high, meeting the eyes of others around them with kindness. And so, I will try to do the same.

This post originally appeared on Blessed by Brenna.

Want to celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Find this story helpful? Share it with someone you care about.

Related to Ichthyosis

We Never Guessed Our Daughter's Pigtails Would Teach Us So Much About Life

My husband, Evan, always told me he didn’t do girl hair. Ponytails, pigtails, braids – forget it. As our second pregnancy progressed and we envisioned our little girl, we saw pigtails. Blond, whispy pigtails pulled up on the sides of our daughter’s head, bouncing as she toddled curiously and playfully around our home.  On the [...]

Why I Don’t Mind Having One Less Band-Aid

Last Friday afternoon, shortly before my son, Dominic, was due to come home on the bus, I popped into my local Kroger to pick up a handful of items for the weekend. As I was putting the last of my things onto the conveyor belt, I overheard the gentleman who was bagging my groceries say to the [...]

Dear United Airlines Employee Who Saw an Overwhelmed Mom and Actually Did Something

Dear United Airlines employee at Yeager Airport in West Virginia, I was waiting at the airport desk with a preschooler, carrying a backpack, a baby in a stroller, two large suitcases, a handbag and a carry-on when I found out my flight to Washington Dulles in Virginia had been delayed. I saw you look at me with [...]

Dad Honors Son With Disabilities With Incredibly Sweet Rap Song

Eight-year-old Jared was born with several disabilities including cerebral palsy, epilepsy and hydrocephalus, a condition that leads to brain swelling, due to a stroke he suffered in utero. He cannot walk, see or speak. But to his dad, he’s a real superstar. Jared’s dad, Jayce Correia, is so inspired by the courage Jared shows every day [...]