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) after a typical, full-term pregnancy. She spent 11 days in the NICU when she was born because the doctors knew she had something going on, but they weren't sure what it was. She had trouble feeding; she would choke and turn blue. They found that she had reflux, and medication helped with that. We worked to help her eat with a special bottle; it turns out that she had facial paralysis, and that's why she had trouble getting enough suction to eat. Once we got home, we kept feeding her and taking her to appointments; we started therapies. They still didn't know why she struggled with so many things. Then at a routine ophthalmology appointment when she was 6 months old, she was diagnosed with moebius syndrome, which includes facial paralysis and lack of eye movement as its defining characteristics. She has ptosis (droopy eyelids), but she can see; she's farsighted, but she started wearing glasses at 2 to correct that. She was diagnosed with autism at seven; 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 told us that she has cerebral palsy. We weren't overly surprised; we suspected she had a neurological condition that affected her muscles, in addition to the moebius syndrome; the neurologists we had seen had told us that much; they just weren't sure what it was. We weren't sad; it was actually a relief to finally have a diagnosis 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 so 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. We were also told at that appointment that if they had seen her a year earlier, when she still depended on a walker to get around, they would have told us she'd never walk. And they would have been wrong. I'm so glad they would have been wrong; there's nothing like seeing the pride of a six year old who just learned to walk. Zoe has a disability, but that isn't who she is. Her disability is a part of her, but it will never define her.
