Last Monday we had one of those days where I got more done in a few hours than I am typically able to get done in a week. It was glorious. It was also ridiculously hot and sticky. So, in order to celebrate how fantastic the whole day was, Ezzy, her caregiver Mayah, and I went out for ice cream.

We sat in a shady spot with our cones. Ez sat in a tired and slightly wilted, but very happy, side reclining pose in her wheelchair. We gave her tiny tastes of ice cream off our finger tips (end result? mint ice cream = frown, coconut ice cream = smile), and we gave her a tube-meal while trying to down our ice cream before it melted down our hands.

After a while I noticed there was a little girl who was sneaking closer and closer to us in a shy effort at making friends. Eventually she started talking with us…she was sweet and articulate and curious–telling us about her big sister and baby brother between darting back to her grandmother now and then to steal bites of her ice cream.

At one point I asked her how old she was. Four, she said. I responded with a smile, Esmé is four too. When is your birthday?

Turns out, she was born the day after Esmé.

Now, I’ve gotten passed the period where I can barely look at any child who is the same age is Esmé–a period that lasted longer than I would like to admit. The gap in abilities is so immense that there is no point in trying to ignore it anymore. And both the little girl and her grandmother were absolutely lovely with Esmé. But there was something about meeting this girl who was almost exactly Esmé’s age that triggered some of that old ache. And I found myself being haunted in the days since by a lot of the things this little girl did so effortlessly…I’ve been wondering what it would be like to look on while Esmé tried to engage a stranger in friendship, hearing her explain the thoughts that are running through her mind.

More than that, however, I also found myself troubled by what Esmé must think or feel when she sees another child her age able to do these things so easily–when she sees another child engage her mother in a way she cannot.

This worries me more that it has in the past, because in the past she seemed not to notice or care much what others were doing if what they were doing didn’t impact her. But we are starting to see this emerging social awareness…primarily born, I believe, from her time at her wonderful school once a week with her wonderful friends.

For example, this week at school for the first time she recognized that her classmates were transitioning from the reading rug over to the tables for snack. Her classmates all stood up and moved in that direction…and she followed them, purposefully army crawling to the table to meet them. And then she sat at the table until all of the children were finished. This is a feat for her.

Later on in the week she tried to crawl out of her occupational therapy session with her caregiver and her therapist–the aimed herself toward the door I had disappeared behind, answering their questions as to where she was going with a Maman, Maman, Maman.

All of this is wonderful. It means that she is increasingly attuned to her surroundings–and what people are doing around her. It also means that she is going to be increasingly aware of the difference between her and others.

Already I think I have recognized this. Recently we watched an unfamiliar episode of Yo Gabba Gabba, Baby. And in it the characters talked about all the things “babies” cannot do–walk and talk and eat on their own. Ez loves Yo Gabba Gabba and had been watching in her intent way–chin up nerdily in a way that always makes me think she’s about to take notes–but as soon as this discussion started she began to whine in protest…getting increasingly anxious until I turned off the show.

It may have been a coincidence. But I cannot help but think she understood, and was upset that she might be seen as a baby because she does not walk or walk or eat on her own…just like I cannot help but think she understands when kids who are younger than her point at her and say Look Mommy, a baby!

I tell her all the time what a good girl she is, what a big girl she is…and how proud we are of everything she can do. And I try very hard not to place pressure on her about future successes…I never say things like: I think she is going to walk someday. Favoring instead: She is making gains with her standing and supported steps…these are great gains in her mobility! This is sometimes misunderstood as giving up on her walking someday–I haven’t. It would be great if she did. And we constantly work toward it–day in and day out. But, honestly, it doesn’t matter too much in the grand scheme of things. And I never want her to form her self-worth or identity around what she might do someday (or, frankly, might fall short of doing someday). Nor do I want others to perceive her as incomplete because she is not doing something yet.

And I think this really gets at the challenge of how to sensitize the world around her to her–you cannot explain to the kid who calls her a baby in passing that she is older than him. But we (meaning her school team) have been able to educate her classmates about something that I believe is so much more important than anything they might learn in preschool: thoughtfulness and sensitivity to someone who is so very different from them. I truly believe they will carry this gift with them for life in some way.

And, at the end of the day, I have hope that the little girl we met last week who was one day younger than Ez is learning that somehow too…there is evidence that she is in the way she seemed unfazed that Ez was her age, in the calm model her grandmother presented as she kindly remarked about Esmé’s beautiful name. They weren’t overly curious, or eager to categorize her. They just accepted her as she is: This is Esmé, she is four years old.


  • Beautiful!! I feel like you are putting in words the feelings that are in my heart. I feel every word you say and you say it so beautifully! I think kids have a pure heart and if we show them that everybody is special and worthy, despite the fact that some need a little more help than others they will grow respecting one another. I do too look at Sophia and wonder if she wishes she could do what the other kids do. So far she seems entertained by them running and playing around, but that could change and I want to be able to give her the support she needs to understand. Thank you so much Hillary, you have no idea how much reading this helps me to feel less alone!

  • Thank you Natalia. It means so much to me to know that reading about Esmé makes you feel as if you and Sophia are less alone…that is such a big part of why I do this–another part being that it makes me feel less alone. And the last part is that it helps me to connect with others and have good conversations about how best to support the Esmés and Sophias in the world!

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