Lately my notions of what is possible for Esmé are changing.
I don’t mean the distant ones that I do my best to keep an open mind about: Will Esmé speak? Will Esmé walk? Will she fall in love? Will she find a way to share her talents with the world through some kind of work?
Rather, I’m referring to my concepts of what the five-and-a-half-year-old girl in front of me can do…these are changing. Since our trip to camp, since a new daytime caregiver, Katie, has entered our world with tons of ideas (YIPPPPPEEEEEE!!), since I’ve been thinking about the least restrictive Kindergarten environment–my thoughts on what, on any given day, this little girl can do are shifting.
In general, I have very little patience for people who see life in terms of what is impossible, or who settle for status quo, rather than those who think: “Ok, how do I make this [new, exciting, dream] thing happen?” and then get down to the business of making a plan. However, when it comes to Esmé, that part of me fights against the fiercely protective mama bear part. I have seen too many things go too wrong with Ez to be naïve about new and exciting things. I have an all too clear understanding that what I wish I could do with Esmé might not sync with a safe and comfortable reality for her. Parenting Esmé is certainly not an act where things “just fall into place”–where you can look the other way and cross your fingers and ask “I mean how wrong could this go?”
So, last week as Katie and I discussed summertime activities for Esmé, and the idea of Esmé going on rides at the small amusement park near us, Huck Finn’s Playland, came up it was hard for me not to dismiss the idea off hand. My brain immediately chastised me for even considering it: Oh sure Hillary, you’re going to take your fragile, non-verbal daughter with a movement disorder on some retro rides without five-point harnesses. And spin her around high in the air. Brilliant. Just brilliant. This is how people end up on the news, Hillary.
But I then told my brain the following: Settle down, friend. People take infants on these rides. This is how kids have fun. Esmé deserves some excitement…and you’ll figure out a way to make it work. Or we will walk away.
So we went.
Katie had been on most of the rides before, and she points out the three or four options that Ez could ride on with an adult (or two) holding her.
I eye the rides suspiciously…looking for every single possible safety threat.
Brain: Walk away! Walk away!
Other interesting things to know about me? Once I dressed up an $8000 pieces of medical equipment like gorilla so Esmé could be Dian Fossey for Halloween. And I have a doctorate in communication and rhetoric--which is good for mediocre wall art and the occasional Aristotle joke.
My first short book, Around and Into the Unknown, is about our journey through Esmé's DNA. My second short book, Whoosh, is about Esmé's cardiorespiratory arrest. My writing has also appeared in the Huffington Post Parenting Blog, the New York Times parenting blog Motherlode, and The Mighty, among others.