The “tender languor” of Down syndrome

Juliet overcoming her hypotonia (thanks to PT from Michelle Wilder)

Juliet overcoming her hypotonia (thanks to PT from Michelle Wilder)

What if one of the ways you could diagnose a person’s genetic condition was based on how their body feels?

This is what happened with our postnatal diagnosis of our daughter Juliet.

After the obstetrician cleared the room, she explained to my wife and I the reasons they suspected Juliet had Down syndrome. She explained how for most babies, having spent nine months in the confined space of the womb, they naturally remain balled up with their arms and legs pulled to their torsos. But not so for Juliet.

Instead, Juliet’s arms and legs splayed out from her body. This suggested the very common characteristic associated with Down syndrome called “hypotonia.”

“Hypo-what?” was my question.

For most individuals with Down syndrome they have hypotonia, or low muscle tone. This condition contributes, among other factors, to individuals with Down syndrome often being overweight. If it was simply harder to move your muscles because they had an inherent low tone, then you, too, would likely have difficulty shedding the extra pounds that accumulate as the body’s metabolism naturally slows down.

So, that is the negative associated with hypotonia. The condition can be off-set to a certain extent through early intervention physical therapy and a continued regimen of healthy exercise. But, it can lead to fallen arches of the feet, poor gait causing hip and knee pain, and the variety of body aches one can imagine if moving simply took more work.

But, there is a positive that I’ve come to appreciate with hypotonia: how my daughter feels.

Nineteen months after Juliet was born, her little brother James came into this world. Unlike his sister, James just has 46 chromosomes like most of the rest of us. Having a child with Down syndrome and one without, I can say that Juliet simply feels different than her brother and others who do not have hypotonia.

She has a softness in her whole body that gives the gentlest hand holds, the most complete collapse-into-your-body hugs, and is an expression of Juliet’s naturally sweet demeanor.

Over 50 years ago, Dr. Jerome Lejeune described this characteristic of Down syndrome like this:

Their entire anatomy is more rounded, without any asperities or stiffness. Their ligaments, their muscles, are so supple that it adds a tender languor to their way of being. And this sweetness extends to their character: they are communicative and affectionate, they have a special charm which is easier to cherish than to describe.

I think Dr. Lejeune’s description is beautiful and describes Juliet’s way of being perfectly.

When we think of human diversity, we typically think of different races, ethnicities, and sexual orientations. But, what diversity should also include is this softness of Down syndrome as compared to the angular, stiff, hard bodies that so many of us actively train to acquire.

The tender languor of Down syndrome is something to be cherished. If you don’t believe me, just go hug someone with Down syndrome. Then you’ll understand how this difference in physical feel adds to the experience of living in this world.

Trackbacks

  1. […] as a newborn: a shock of dark hair, deep, beautiful eyes, and arms and legs splayed out from the hypotonia–low muscle tone–that most individuals with Down syndrome have. It’s heartbreaking […]

  2. […] As anyone who has been recently pregnant in North America will likely tell you, our experience is now common for people with access to prenatal care. Yet some disability scholars and activists would argue that I was engaging in a form of eugenics both because I submitted to these tests, and because I would have had abortion if our fetus tested positive for a disease like MSUD. The writer George Estreich argues that while prenatal testing isn’t itself eugenic, its availability could encourage eugenic ideologies that stem from early twentieth-century beliefs that a person with a disability could never be part of the “human family.” The bioethicist Mark Leach takes an even stronger position, and explicitly calls prenatal testing eugenic because it’s sometimes used to abort fetuses diagnosed with Down Syndrome, which he argues should be accepted as part of human diversity. […]

  3. […] argument is not one based on a defense of human genetic diversity–though I have written extensively on how Down syndrome can and should be considered yet one more expression of humanity […]

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