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.

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