about Zoe

 

Meet Zoe. Zoe is 12 years old, and she is a character! She loves animals, music, vacation, and her people. She has a great sense of humor and amazing timing. She likes to dress as a princess, and she likes to wear shoes that make her go fast. She snuggles our pets; they love her and tolerate her at the same time. Zoe enjoys helping with chores around the house; as I'm typing this she's behind me folding laundry while listening to Disney music on Pandora. I still haven't found my favorite pajama top from the last time she helped me. She has particular fascinations with a variety of objects; the list grows and changes as she does. Currently she takes photos of exit signs, open signs, any posted rules/guidelines she sees, emergency vehicles (she can distinguish between the sirens before she sees the vehicle; she knows what's coming), fans (ceiling, oscillating, doesn't matter), musical instruments (especially those with strings), and there's probably something I'm missing. She tends to be temperamental, and she has several imaginary emotional support pets who take turns keeping her company, primarily while we're driving, on the hard days; they know when they're needed and when they're not. Her current favorite is Carrots the bunny; he's cuddly, but sometimes he bites.

Zoe was born with spastic diplegia cerebral palsy, level 2 (although not diagnosed until seven years later) and moebius syndrome (diagnosed at 6 months). She was diagnosed as having autism at seven as well; we were actually at an appointment to discuss the possibility of her having autism when the nurse practitioner with whom we were speaking pulled up her brain MRI (taken at 3 days old, at the same hospital where we were). She had a good look at it, called in the developmental pediatrician she works with to look at it, and they gave us the news. We weren't overly surprised; we knew she had a neurological condition that affected her muscles. We weren't sad; it was actually a relief to finally have a diagnoses because, by that time, we had seen so many doctors who didn't know. They were all in agreement that she had more going on than moebius syndrome; moebius mostly accounted for her facial paralysis and difficulty eating, not as much the fact that she didn't walk on her own until shortly before this appointment. We were a little flabbergasted that her seven year old MRI hadn't been properly read until then, but what can you do? The timing of that appointment was actually amazing for us because she had been turned down twice that year by insurance to replace the wheelchair she'd had for four years and was outgrowing. A few weeks after this appointment, she was approved.

Zoe has a disability, but that isn't who she is. Her disability is a part of her, but it will never define her.