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.
For me lately, it is Connor's weekly swim lessons.
The kids that 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.
The warm air in the pool area means that I have to dress Brenna in short sleeves and take her hat off, her hair sticking out in sparse patches and greased up with 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 that 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 very few situations that I think "I wish things were different." But I look at the pool with envy, and I wish that I could throw a suit on Brenna and splash around with her without a care about germs or water temperature. It's simple and not important in the grand scheme of life, but it's there, that wish.
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.
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 is my hope to instill the confidence in my kids to shake off the swim lessons… to move forward with their heads high and meeting the eyes of others around them with kindness. And so, I will try to do the same.