I used to get jealous looks from the moms of the tantruming toddler and the whiny pre-tween as I pushed my quiet solemn child around the grocery store.
But lately we aren’t flying under the radar anymore. 
Part of it is that people have begun to register Esmé’s unusual motions, the bit of drool sliding down her chin, the clear snake of tubing sneaking out from underneath her shirt…they see her and they have begun to understand: Esmé is a disabled child. 
The other part of it is that I am increasingly open about my daughter’s disabilities, willingly engaging strangers about her differences.
But I am not very good at it yet.
This has lead to some awkward exchanges ending with a stranger looking at me and nervously laughing—thinking I am telling some kind of inappropriate joke. And while I am known to tell all kinds of inappropriate jokes (believe me), here are five things I have said to strangers in the grocery store that are totally not jokes:
“She is four years old”
I always wince internally when someone asks me how old my daughter is. She is physically quite little—she is well into the no-man’s land below the 1st percentile. She is about the size of a tall thin 18-month-old. She is non-verbal. She does not walk. So when I stand up a bit taller, jut out my chin ever-so-slightly, and say assertively, “This is Esmé, she is four-years-old,” I’m often met with the first half of a smile that is arrested as the person looks my daughter up and down, trying to sort out why I would joke about such a thing.
“This stroller cost more than my first car”
Esmé has an adaptive stroller—essentially it is a wheelchair that looks like a posh stroller—it provides support in a number of places that help keep her upright and safe when we are out and about. Her chair is bright red with shiny rims. When we are out I notice pregnant women’s partners tapping them and nodding toward our wheels.  I’ve had moms with coveted strollers say things like “Boy, that is an amazing stroller!” I have been known to respond—thinking that they can fill in the blanks—“Esmé’s chair cost more than my first car!” Because it did. About twice as much. The chair is an $8000 piece of medical equipment. Seriously.
“Really, I promise you, you don’t wish you were that flexible”
Esmé has low tone and hyper-extensibility in her joints. This means that her feet quite easily reach to her head and beyond. People passing my daughter folded up like a yogi, slapping her face with her own foot, often remark, “Oh I’d love to be so flexible!” However, that flexibility also means that when you lift her, you need to be careful to not dislocate her shoulders. It means that she struggles to sit and stand up—that she may never walk. It also means that her mouth and tongue struggle to work properly—to form a variety of sounds, to safely eat and swallow.
“Oh no I don’t feed her” 
When someone offers Esmé a lollipop or asks about her favorite foods or comments on what’s in my cart for her dinner, I might respond that she “doesn’t eat, you know, with her mouth.” My daughter has been fed through an abdominal feeding tube since she was three months old—when she experienced cardiorespiratory arrest due to double aspiration pneumonia. She has been tube-fed for so long that I genuinely forget that all children don’t come with tubes—tubes to help you sneak in a few extra calories while they sleep, tubes to keep them hydrated when they are sick, tubes to be sure every last drop of medication gets into their little bodies. I forget that people have to make decisions about their children’s diets based on things like flavor. And when I think about other kids only eating with their mouths, it seems like a joke to me…as I am sure my proclamation that I “don’t feed” my daughter sounds like a bizarre jest to them.
My toddler takes harder drugs than that
Checking out in the grocery store I often find myself giggling internally when I get carded for my darling six-pack of hard apple ciders. Compared to the dose of benzodiazepines in the paper pharmacy bag in my cart, the six-pack looks about as harmless as its underage sibling: apple juice. The drugs I pump through my daughter’s feeding tube three times a day would certainly knock me out for the day. It’s really not funny. But neither is the alternative: seizures.
Having a child who is medically complex is serious business…but it is also involves finding humor in unexpected places. Not just because it is how you get through—although it is that too—but because of the friction between our “normal” and that of the outside world. It is funny that I forget that all children don’t come with tubes, that the third most expensive thing I own (after the house and the car) is a 50-pound stroller on steroids, and that terms like incomplete hippocampal inversion roll off my tongue more easily than my Starbucks order (which is Venti anything caffeinated, if someone is ordering).
It is funny that I don’t understand how I sound. And it is funny that people often have no idea how to respond to me. And it is funny that I’m not even sure anymore how I want people to respond to me. But what is perhaps funniest of all is Esmé as she watches me struggling caught in the space between her world and the rest of it all. Esmé, who looks at me out of the corner of her eye, wrinkling her nose at some secret thought about the waves she causes in the world around her, laughing.

10 Comments

  • It sounds like you are handling awkward situations with grace. Good job!
    By the way – Your daughter matches the name of her syndrome quite well. She's very cute.

  • In response to wishing you were that flexible: I have hypermobility in several fingers. My right ring finger tends to lock when I trill with that finger. The pinky on the same hand tends to lock (and it hurts and stays locked) when I play C3. It is annoying when my fingers lock. If you want to be that flexible, don't try to play the flute.

  • I love reading this blog, Hilary. You are a very talented writer and even more amazing Mom. Esme is one lucky girl… but we all know that honestly, you are one lucky mom <3

  • First of all, I must say that Esme definitely does have the cute syndrome! My daughter isn't as medically complex as Esme. The only one I have any experience with is the medication one. It always cracks me up when I hear people complaining that at $65 their medications are exorbitantly expensive. My daughter's monthly meds cost more than my husband actually earns each month!! Thank God for the medicaid waiver or we'd be in big trouble!! People just don't have a clue!

  • My daughter is 13 but is the same size as my 3 year old, due to CP compounded by orphanage abuse/neglect. I always get a little belligerent when people ask her age…
    "How old is she?"
    "Well, how much time do you have?"

  • I just checked out your blog. Your children are beautiful! People really have a difficult time processing size/age, I think. And it is so hard on us to keep having to answer the same questions over and over–and to see the same looks over and over again. I try so hard to wear my "educator" hat about such things…but man it can get exhausting sometimes! 🙂

  • I can resonate with the first four comments/scenarios. My son is a 15th-percentile 4-year-old (who used to be a <1st-percentile 2-year-old), but he is non-verbal and his mannerisms are infant-like, so everyone assumes he is much younger. He has a Special Tomato push chair, which looks fairly conventional, but boy do people rave about our "fancy convenience" and "amazing stroller!" His is also completely g-tube dependent and has significant hypontonia (cannot crawl, stand, or walk yet). Love this post!

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