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CHARGE Syndrome

How it started vs. how it’s going


Damn. Talk about progress. Our little fam has been through a lot since that “how it started” pic of Sloan, intubated, in her NICU crib. Through it all, there’s someone who never ceases to amaze me no matter how dark or scary life feels…And guess what? That someone is Sloan. I am changed by Sloan, her ability to thrive and succeed, and will always will be this changed new person no matter what our future entails together.

Sloan is the realest of real. She’s funny, smart, knows how to work the system, and actually a pretty big grump sometimes. She took after her mom on that last one. So…That’s fun.

I never thought I’d be cheering on my child’s tantrums instead of rolling my eyes at them, knowing it’s a sign that she is in a place to cognitively acknowledge frustration. I never thought I’d be in a room with highly revered, tough neurologists as they cry and say they never expected Sloan to do what she’s done.

Yet, here we are.

This experience isn’t free of stress, fear, trauma, and pain – and my journey into parenthood isn’t how I pictured in the slightest. Especially as it stands today.

I will (and would) do anything to help Sloan succeed in the world and find her own form of independence, but I wouldn’t change the experience we’ve had together. And that’s simply because she just wouldn’t be Sloan, and I wouldn’t be the mom I am, if things were any different.

Love you, Sloan. In all of your awesome, perfect, wild, unique glory.

Parenting a child with CHARGE syndrome is scary at first. While that fear never totally goes away, these kids take off into the world in beautiful, amazing, unexpected ways.

So if you’re new around here, welcome to CHARGE parent life. 💙🤟

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