Several medical professionals have told me that Esmé is the “lowest tone child they have ever encountered.” You know, these days it takes a lot to stand out, but my girl is invested.

Now, an astounding number of genetic conditions come with low tone (hypotonia) on the list of symptoms. But to be the lowest tone child some in the medical field have ever met…that is something else, kid. Her low tone means that Ezzy is very floppy and flexible. It makes her difficult to hold–she can slide right through your hands because her arms don’t press back against you when you lift from her underarms. It makes her movements kind of jerky and unexpected, like she is overcoming a great weight to move–because she is. It makes her joints pop and crack–and sort of dislocate.

The funny thing about low tone is that it is one medical condition that people are constantly commenting on, presumably because they don’t realize that it is a medical condition…and it makes for some awkward moments. Whenever I take Ezzy out someone is certain to take one look at her–lying back in her stroller, arms limp at her sides, feet propped up on the tray in front–and say “oh, she is so relaxed!” Nope, she’s not relaxed, she just doesn’t have enough power to change the position of her legs from where they got stuck. When she is out of her stroller, draped limply in my arms, I get: “Someone’s sleepy!”

At first I didn’t understand why everyone thought my daughter, who was clearly (to me) alert and observing, was sleepy. This is the same dense part of me that told my hubby after holding another (totally healthy) baby that there had something wrong because he had “too much tone.” While hypertonia (too much tone) is also a medical condition–it is not a condition that this particular child had. I wasn’t trying to be silly, I was totally serious and concerned.

I have realized since that I was slightly delusional.

But I get it now, Ezzy has extremely low tone, lower, I guess, than I had really realized. It just feels like “normal” to me…but for others Ezzy’s baseline is really sweet, like she is totally calm and snuggled down for a nap. Now that I understand I am not offended or anything…(most of the time).

The other comment people make pretty often is: “Oh, I wish I was that flexible.”

I find this one harder to respond to because, no, really, you don’t wish that. Not at all.

You see, if you were that flexible you’d be unable to stand, move under your own power, or get your  body untwisted from the bizarre positions you find yourself in. You’d get terribly frustrated. You would feel vulnerable. Your body would ache.

But people don’t know this. Even some people I have tried to explain it to don’t seem to understand. Honestly it is hard to understand until you’ve struggled to keep her upright and balanced on your lap…Pure flexibility can, surprisingly, be your enemy. The body requires a balance of strength and endurance, flexibility, and structure. Ezzy has strength but lacks endurance. Obviously she has flexibility but it robs her of structural (anatomical) advantage…her joints don’t stack properly, they hyper-extend in a mind-boggling way, crack, shift.

As I have grown into being Ezzy’s parent I have though often about both the figurative and literal balance of structure and flexibility. Most of my life I have felt (or been told) that I needed to be more flexible. You see, I can be totally compulsive. I have tended toward over-organization. I am usually ten minutes early. I have spent a lot of time feeling bad about the part of my personality that gets angry at tardiness (and, man alive, am I related to a bunch of people who are always late), or the part that cannot stand to have things out of order, or the part of me that loses it when things change out from under me.  I have sought, at different times, to suppress or change this part of myself. It has never worked and always ends in me feeling like a terrible person.

But you see, as I sit here writing this, I am in a house that is completely disorganized. There is laundry waiting to be folded. There are power tools in my bathroom (that I can see from where I sit). I’m pretty sure I forgot to pay a bill or two this month. I am late reasonably often these days (thanks to seizures, vomiting, unscheduled naps, and plain old exhaustion), and I no longer get that sweaty-palm, heart palpitation, dry mouth feeling when I am.

It is not that I have changed so much, it is just that I happened to find myself with a child that requires all the obsessive-compulsive, controlling, organized energy I can muster. Just getting out of the house in coordination with her medication schedule feels like organizing the Olympics at times. Every disorder, every drug, every therapy, every everything requires thorough investigation. I chart every seizure in a spreadsheet and graph and re-graph the data looking for any pattern that could help us. Recently I saved Esmé from TWO potential serious overdoses of medication that might have killed her, thanks to obsessively checking over every script, every dose of meds, even in the hospital.

I am required to be obsessed and structured about her safety. It is all I think about. And the laundry can just fucking wait.

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