Living with a child who has a chronic illness is unpredictable. One moment you’re watching a seemingly healthy child play, the next you’re holding a limp body. Sometimes with just seconds in between. And the scary thing is after it happens enough, you stop panicking. And just pray your child makes it through to do it again.

When this happens people say, “I could never do that.” But they could, and they would. Because the alternative is something so much worse, something nobody dares to speak of. But even unspoken, it’s known, and the fear of it haunts you.

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I’ve seen my daughter stare down death, and it’s gut-wrenching. It takes my breath away to even think about it. Not in a metaphorical sense, either. In a terrifying, I can’t get air through my body sort of way.

But on this side of trauma, I’ve seen something else, too.

I’ve seen life through the eyes of a fighter. And THAT is a gift.

I’ve seen a little girl grow wise beyond her years. A child who gives herself, knowing the value of time. Someone who savors moments I, as an adult, miss because she knows the next one isn’t promised. And I’ve learned so much from her because relentlessly, she keeps on fighting.

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She could ask why me? but she never has. Instead, when she hears a child cry out in the hospital, she colors them pictures and slides notes under their door as if to say you’re not alone. She never tells them it’s OK because it isn’t. There’s nothing about a child hurting that’s OK. But she knows if only for that moment they are.

I don’t think for a second she’s blind to the uncertainty her future or anyone else’s holds, she just knows the only moment that matters is now. And she’s teaching that to me.

She knows what family is. That it isn’t only blood. And they’ll do anything to support one another.

She knows sometimes it is as much of a blessing to be asked for help as it is to be helped. And she makes sure I know that, too.

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She knows what it is like to be loved, and every day she shows me what it’s like to love.

She sees the world with hope and optimismin a way that without her I never could. And while so many people can’t imagine the course of ups and downs, we live, I can’t imagine the alternative.  

I’ve seen death in her eyes and because of that, I’ve come to enjoy life through them.

Cara Arnold

I’m a mama to 3 whose learning to balance parenthood and chronic illness at the hands of autoimmune encephalitis. Some days I’m a soccer mom, carpooling like a boss; other days I’m a relentless advocate, taking on doctors and insurance companies alike. But, if you’re looking for consistency every day I’m a hot mess. My life is a puzzle that’s still not together. I used to think pieces were missing. But it's all finally fitting together. It’s not what I envisioned, and some days I mourn that; but it’s mine. And knowing how fast that can change I try to appreciate every moment of it.