When I pitched this experiment to my editor, I told her I recognize that I dress my daughter Esmé differently than I might otherwise have because she is disabled. Recognizing that this sounds a bit weird, I explained that I want Esmé to be dressed extra cute because I want her to be approachable, and I recognize that her drooling, unusual movements, atypical behavior, and feeding tube might intimidate people (although I wish they wouldn’t). At some point I realized that Esmé’s adorable outfits drew kind comments from people and opened doors to conversations. So I started to do it more and more — matching the kerchiefs I put around her neck and the cloth pads she wears around her feeding tube carefully with her shirts and pants.
There is a lot more to the ways I dress my daughter than what looks cute, of course. Some of it is practical, like avoiding skirts and dresses which impede her movement. Other parts of it are emotional, like the fact that I want her to feel as though she doesn’t have to wear the same clothes and shoes for years just because she doesn’t grow out of them, while other children get nice, new crisp clothes year after year. But, the fact remains that Esmé’s ability to select her own clothing is quite limited. She can pick between options in the morning, but often doesn’t care to. So I pick for her most of the time. I spend a lot of time thinking about what to dress her in, trying to honor the spirit of her interests, her comfort, the weather, and, I’ll say it, my own tastes. I want her to feel loved and cared for in this way... and I want other people to see this too.
As you can tell, I spend a lot of time thinking about Esmé's clothing. I’ve even written about how I dress my daughter before as a kind of tongue-in-cheek style guide. But the idea for this experiment wasn't just about documenting her outfits. The goal was to spend seven days trying to document the reactions and comments her outfits drew — and what those reactions told me about how people responded to Esmé. But by three days into the experiment, I found myself wondering about someone else's reaction: My daughter's. What did she think of all of this? And so, the experiment began to change shape.
On what was, essentially, the last day of our vacation, before the two-day drive home through New Brunswick, Quebec, and New York, I dressed Esmé in my favorite outfit: A light chambray top with little pink details on the sleeves, comfy pink capri pants, and a kerchief with an arrow pattern. I decided to match with her in my own comfortable, loose chambray blouse. We spent much of the day pushing Esmé in her wheelchair in solitude by inland waterfalls, at the fishing wharf and jetty, and on the cliffs along the Bay of Chaleur. The people we crossed paths with nodded and said, “Bonjour,” if they said anything, although I noticed a few people watching Esmé closely. Perhaps they were admiring her, but, also, I’m sure, they were trying to figure her out, as she danced her feet and rocked back and forth in excitement in her bright red wheelchair.
One sweet woman in a store, where I’d was carrying Esmé over my shoulder said, in thickly accented French, that Esmé was very cute and sweet. Esmé seemed comfortable and happy. And that was, really, about it.
We spent the majority of the day in the car, so I dressed Esmé in a striped blue ombré shirt and jean shorts, with a camper kerchief I thought was a funny nod toward our day-long voyage across a beautiful and not-so-densely populated stretch of Canada. And Esmé’s hair was, well, how do I explain this? Esmé’s hair is a bit of an entity all its own. It's a completely untamable mixture of wavy, curly, and straight. And Esmé abhors it being touched. So I tend to go the route of messy top knot, just to keep it out of her face and hide the snarls. Also I rather enjoy the bohemian/raised-by-wolves look it gives her.
Come to think of it, her wild hair may play no small part of why I dress her so carefully as a counter balance to prove I'm not neglecting her in some way. Nobody said anything about Esmé’s outfit on this day, perhaps because they were afraid this bored wolf child might bite them (which is not, honestly, an unrealistic fear), but she was on the receiving end of a number of admiring smiles.
For the final leg of our ride home I put Esmé in a black t-shirt that nods to her hometown, khaki shorts, black Nike sneakers, and a blue kerchief. When we arrived at home I took a picture of her playing happily on the floor. I paused before I posted it on Facebook, thinking about how sporty she looked, and wondering about how this outfit would fit into the experiment. I thought, Oh well, I guess this day can function as some kind of control for the experiment. Then a friend texted me about how adorable and happy Esmé looked in the photo I’d just posted. And I was forced to think about that outfit a bit more. Why did this particular outfit give me pause? I looked at the picture again and realized something: Esmé looks really happy and comfortable. And while this may not be the most photogenic outfit in her closet, that shirt is super cool, is it not? I dress her in it — I mean, I bought it — but it isn’t something I wanted to be part of the experiment. Why would that be? Because it wasn't as girlie (whatever that really means)? Because it was too casual? Not well put together?
But why should any of that matter?
On the fourth day of my experiment, a bit of a coincidence happened, as if the universe wanted to make a point. Esmé’s night nurse, who comes overnight to monitor Esmé for seizures and handle night meds and feedings, dressed Esmé in the morning before I took over. It was unusual. As it happened, the nurse had grabbed the same shirt — freshly washed overnight, I swear — and she put Esmé in the shirt, together with a pair of blue shorts. I winced at the horror of her now appearing in the same less-than-perfect outfit two days in a row. I considered changing her outfit for a beat, but then I thought, after the questions it had raised the day previous, Oh, why the hell not just go with it? Later that day, we headed out with Esmé’s caregiver to go back-to-school shopping. The outfit remained the same. In fact, it helped inspire me to encourage Esmé to participate in the process of selecting the items we bought.
While we were shopping, Esmé’s caregiver and I held up options and tried to weigh her response. She showed a very strong, clear preference for the Dori backpack and she made it clear that pink pleather jackets (which I promise I’d never, ever, ever, have purchased for my daughter for the sake of her comfort and dignity, but I wanted to see what she thought) were not for her. She showed preference for items that were not pink or loudly patterned, and demonstrated an apparent interest in shirts with writing on them… because, of course, she loves letters! I don’t want to give the impression that she was super engaged in the process the whole time, there was a lot she was ambivalent about and a lot of the time she just ignored my questions. But I felt like she was able to show me some better guidelines for how to shop for her and dress her, and that factored into the way I approached the rest of my experiment.
I want other people to see my daughter in the way I see her. I want them to see her, not stare at her. And it has been, on some level, perhaps comforting to me to think that people looking at her are admiring her cute outfit, rather than staring at her.
It was school supplies drop off day. So I put her in a shirt from her new school collection, and when I considered her outfit for this day, instead of thinking about what I wanted to see her in at school, I thought about what would be appropriate and meaningful for her. Esmé going to school at all is a really big deal. She is a fragile child who is surrounded by other people’s ideas about what she cannot do. As her parents, we're constantly trying to look, instead, at what she can do. So I put her in the “Yes I Can” shirt for the visit to her soon-to-be classroom and a celebratory tasting of smoothie afterward. I used the shirt as an opportunity to encourage her around this milestone. I even brought in her gait trainer, so that she could walk herself into the classroom for the drop off because: Yes, she can.
Esmé didn’t feel great on the sixth day of the experiment. This is just part of our reality. There are days when it seems like everything hurts her. There are days when I cannot figure out what is wrong, no matter how hard I try. On these days, Esmé’s spark seems to recede a little bit, and, she cries a lot — because she cannot communicate urgency any other way. I had planned a fun day for Esmé with a lovely walk in a nearby town. Typically, strolling down the main street means there is a treat for her. She likes to roll down the sidewalk and watch all the people on the street. Sitting up straight, her hands in her mouth, bouncing happily, she tries to get the attention of the passersby. So with this in mind, I put on another one of her new school shirts, one that says Future President on it, thinking that it was comfy and optimistic, and expecting that we might get an idea of how well she’d poll (p.s. I think she totally has a shot.).
The way I've dressed my daughter is a kind of defense mechanism. It's a defense of her in many ways: wanting her to feel good about herself, wanting to encourage others to find her approachable, wanting to demonstrate that she is well cared for and loved (even if her hair is knotted and defying gravity), wanting her to know that she deserves special things.
But on this day, Esmé didn’t want to walk. She cried so hard that after only a block or so, we packed up and drove home and napped instead.
Thankfully whatever was bothering Esmé seemed to have mostly gone away by the next morning. She and I had plans to drive out to my parents' place, where my mom and stepdad live on a beautiful country property that was my grandparents' home. We’ve always called this place “The Farm” even before my parents moved there and started raising some animals. Ezzy loves going out to visit there because "Mema" and "Zaidee," as Ezzy calls my parents, have a tremendous ability to find all kinds of fun things Esmé can do.
On this particular visit, Esmé’s Zaidee let her steer the tractor, which made Esmé’s day. Again, I’d dressed Esmé in one of the new shirts she’d helped pick out — this one had a fox on it. I guess I grabbed the fox because we were going to the farm? You know what? I have no idea. It didn’t seem to matter all that much, frankly. She was happy. So was I.
What I Learned
I realized that a lot of the way I've dressed my daughter is a kind of defense mechanism. It's a defense of her in many ways: wanting her to feel good about herself, wanting to encourage others to find her approachable, wanting to demonstrate that she is well cared for and loved (even if her hair is knotted and defying gravity), wanting her to know that she deserves special things. This is a direct result of knowing how many things in life have already been and will continue to be denied to her.
It is also, of course, my own defense mechanism — perhaps the same one that has me throwing on brighter and brighter lipstick the crumbier I feel. I want other people to see my daughter in the way I see her. I want them to see her, not stare at her. And it has been, on some level, perhaps comforting to me to think that people looking at her are admiring her cute outfit, rather than staring at her. Rather than doing the calculation of trying to figure out what’s so very different about her.
Perhaps, however, I've gotten a touch lost along the way. Of course I know that my daughter is so much more than her clothing. I know this. I am not at all confused about this. But, also, I want her to know this. I want her to know that I know that she's more than how she looks, how she dresses, and how cute she is. And I want other people to know this as well. My daughter is adorable, no matter what she’s wearing, that is the inescapable truth. But also? She is clever, capable, determined, silly, vulnerable, and so many other things. So many things that she will still become.
So, this morning, I mindfully put her in a pretty light flowered blue shirt — because I like it — and a pair of shorts. But I didn’t tell her she looked pretty in it. Instead, as I dressed her I told her I picked it because I thought it would be comfortable in the heat. I watched her move in it, as she played on the living room floor and then crawled to the window beside the door and pulled herself to stand, wobbly kneed. I thought, My god, she’s adorable, but I said, “Wow! You are so strong!” Because she is.