When I gave this experiment to my editor I was told that I felt my daughter was dressing differently than I had because she had disabled Esma. Realizing that this is a little different, I want Esme to be extra beautifully dressed because I want her to be approachable, and I feel that her bloating, abnormal movements, strange behavior and esophagus may threaten people (even if they want to). At one point I realized that Esme’s adorable dresses received warm comments from people, opening the door to conversations.
There is a lot more to the way I dress my daughter than just being beautiful. Some practical, such as avoiding skirts and dresses that hinder her movement. The other parts of it are emotional, I like to feel that she doesn’t have to wear the same clothes and shoes for years because she didn’t grow out, the other kids are nice, the new ones are crisp clothes every year. But the fact is that Esme has very limited ability to choose her clothes. She can pick between choices in the morning, but often ignores it. So I choose more time for her. I think about what she should wear and try to respect the spirit of her interests, her comfort, the weather, I will tell my own tastes.
As you can tell, I spend a lot of time thinking about SM’s outfits. I have written about how to decorate my daughter as a style guide on the cheek. But the idea of this experiment is not just to document her clothes. The goal was to try to document the reactions and comments that garnered her clothes for seven days – and those reactions told me about how people reacted to Esme. But three days into the test, I wondered about someone else’s reaction: my daughter. What did she think of all this? So, the test format began to change.
Essentially, on the last day of our vacation, two days before heading home via New Brunswick, Quebec and New York, I wore Esme in my favorite outfit: a light sambrey top with small pink details on the sleeves, a kerchief with comfortable pink capri pants and an arrow shape. I decided to match her with my own comfortable, loose chamber blouse. We spent the whole day in a wheelchair lonely on the inland waterfalls, the fishing wharf and the cliff at Jatti and Salur Bay. As we crossed the paths people nodded and said “Bonjour” and if they said anything, I noticed a few people paying close attention to Esme. Maybe they admired her, but, as she danced to her feet,
A sweet lady in a store, I was carrying Esma over my shoulder and in densely pronounced French, said Esme was so beautiful and sweet. Esma looked comfortable and happy. That’s what it really is, about it.
We spent most of the day in the car, so I wore the Esme in a striped blue ombre shirt and jean shorts, thinking it would be a fun option towards a beautiful and so dense day trip through a camper kerchief. Population of Canada. Esma’s hair was fine, how can I explain this? Esma’s hair is a bit. It is a combination of wavy, spiral and straight. Esme hates touching it. So I tend to go down the path of the messy top knot, pulling it away from her face, to cover the snoring. I admire the look of the bohemian / bred wolves I give her.
Come to think of it, her wild hair plays no small part in why I dress her so carefully as a counter balance to prove that I do not ignore her in any way. No one says anything about Esme’s makeup on this day, maybe because they were afraid that this boring wolf kid might bite them (which is honest, not an unbelievable fear), but he gets a lot of complimenting smiles.
For the final stage of our riding home I put Esme in a black shirt that represents her hometown, khaki shorts, black Nike sneakers and a blue kerchief. When we got home I filmed her playing happily on the floor. I paused before posting it on Facebook, wondering how playful she was and wondering how this dress would fit the test. I thought, oh, I think this day can act as some kind of control for the test. A friend texted me about how adorable and happy Esme is in the photo I posted. I was forced to think a little more about that outfit. Why did this particular dress pause me? I looked at the picture again and felt something: Esme looks so happy and comfortable. While it may not be the most luminous decoration in her closet, that shirt is super cool, isn’t it? I decorate her in it – I mean, I bought it – but it wasn’t something I wanted to be part of the experiment. Why would that be? Because it’s not female (whatever it really is)? Because it is so normal? Not well integrated? I bought it – but it was not something I wanted to be part of the experiment. Why would that be? Because it’s not female (whatever it really is)? Because it is so normal? Not well integrated? I bought it – but it was not something I wanted to be part of the experiment. Why would that be? Because it’s not female (whatever it really is)? Because it is so normal? Not well integrated?
But why should there be anything in that matter?
On the fourth day of my experiment, an accident occurred, as if the universe wanted to say one thing. Esma’s night nurse, who comes overnight to monitor Esme for seizures and handle night mites and food, wore Esme in the morning before I took charge. This is unusual. As it happened, the nurse was holding the same shirt – freshly washed overnight, I swear – and she put Esme on the shirt with a pair of blue shorts. I won her horror by appearing in the same less perfect outfit for two days in a row. I thought I’d change her outfit for a beat, but after the questions raised the day before, oh, why not go to hell with it?Later that day, we left with SM’s caretaker to go shopping for school. The dress was intact. In fact, it inspired me to encourage ESMA to participate in the process of selecting the items we purchased.
While we were shopping, Esme’s caretaker and I had options and tried to weigh in on her response. She showed a very strong, clear preference with the Tory bag, and she did not have the pink blazer jackets (I promise I would never buy for my daughter’s comfort and kite, but I wanted to see what she thought). She opted for pink or loudly crafted items, and expressed an obvious interest in writing on them on shirts… because, of course, she loves letters! I don’t want to give the impression that he was involved in this activity the whole time, she had a lot of questions and a lot of the time she ignored my questions.
It dropped school supplies day. So I put her in a shirt from her new school collection, and when I considered her outfit on this day, instead of thinking about what I would like to see her at school, I wondered what would be appropriate and meaningful to her. Going to Esme school is a very big thing. She’s a fragile child, surrounded by other people’s opinions about what she can’t do. As her parents, we are constantly trying to see what we can do. So, I put her in a “yes I can” shirt for a quick visit to her classroom and then a taste of celebrating smoothie. I used the shirt as an opportunity to inspire her around this milestone. I even brought her walking coach,
On the sixth day of the experiment Esme did not feel great. This is part of our reality. There are days when everything seems to hurt her. There are days when I can’t figure out what’s wrong no matter how hard I try. These days, Esmay’s spark seems to be receding a little, and, she cries a lot – because she can’t communicate the urgency any other way. I had planned a fun day for Esme with a beautiful walk in the nearby town. Usually, strolling down the main street means she has a party. She loves to roll down the sidewalk and see everyone on the street. Sitting up straight, she puts her hands over her mouth, jumping happily, trying to attract the attention of passers-by. So with this in mind,
The way I dressed my daughter was a kind of security mechanism. It is a protection for her in many ways: she wants to feel good about herself, she wants to encourage others to find those who can reach her, she wants to prove that she is well cared for and loved (even if her hair is knotted and the force of gravity is violated), and she wants to know that she deserves special things.
But on this day, Esme did not want to walk. She cried so hard, after a block or so, we packed up and drove home.
Luckily the trouble with Esma seemed to be mostly gone the next morning. She and I had planned to move out of my parents ‘place, where my mom and I would gradually live on a beautiful country property, which was my grandparents’ house. We always called this place “farm” before my parents went there and started raising some animals. As “Mama” and “JD” call my parents, AC loves to go there because she has the greatest ability to find all sorts of fun things to do.
During this particular visit, Esmein Jedi was allowed to lead the tractor, which became Esmein Day. Again, I wore Esme in one of the new shirts, which she helped pick up – this was a fox. I think I caught the fox because we went to the farm? You know what? I know nothing. Apparently, it doesn’t matter at all. She was happy. So am I.
I realized that the way I dressed my daughter was a kind of security mechanism. It is a defense for her in many ways: she wants to feel good about herself, she wants to encourage others to find those who can reach her, she wants to prove that she is well cared for and loved (even if her hair is knotted and the force of gravity is violated), and she wants to know that she deserves special things. It is the direct result of knowing how many things were already in life, and she will continue to be denied.
Of course, this is my own safety mechanism – maybe I just shine brighter and brighter. I want others to see my daughter the way I do. They see her I want to see. At some point, it comforts me to think that people who see her admire her beautiful makeup more than they look at her. Rather than trying to figure out what is so different about her.
However, perhaps, I missed a touch. Of course I know my daughter is more than just her clothes. I know this. I was not at all confused about this. But, I want her to know this. I want her to know how she is, how she dresses, I know she is more than just how beautiful she is. I want others to know this too. My daughter is adorable, no matter what she wears, it is an inevitable fact. But even? She is smart, talented, assertive, funny, vulnerable, and many more things. Many things she will become more.
So, this morning, I put on her pretty light blue shirt – because I like it – and a couple of shorts. But I did not tell her she is beautiful in it. Instead, I told her I picked it up when I dressed her up because I thought it would be comfortable in the heat. I watched her move in it, she played on the living room floor, then crawled to the window near the door and dragged herself to a standstill and knelt down. I thought, oh my God, she’s adorable , but I said, “Aha! You are so strong! ”Because she.