My Daughter’s Hands Told Us About Her Having Down Syndrome. Now, They Tell Us So Much More.


Juliet-hands The hands of people can tell you many things. The hands of those with Down syndrome are no different.

Beyond palm reading, noticing a person’s hands can tell you a bit of their story: dirt under the fingernails of someone who works in the garden, calloused palms of someone who pulls ropes on a ship, soft hands (like mine) from typing on a keyboard all day in an office. For people with Down syndrome, hands can even suggest their diagnosis.

Prenatally, one of the soft markers for Down syndrome is a shortened pinky finger, which may curve inward, termed “clinodactyly.” This is a “soft marker” because such a finding by ultrasound is not definitive for any chromosomal condition, but it can suggest an increased likelihood for Down syndrome. Postnatally, a common characteristic pointed out to parents is the “single palmer crease.” Most people have two major lines across their palms. Some people with Down syndrome only have a single line.

But I had this thought this past Sunday while observing my daughter’s hands at church.

I watched

  • how she used her index finger to follow along with the words in the hymnal
  • how her other hand was clasped, as though she was holding a microphone, because when Juliet sings at home, she uses a karaoke machine to sing along
  • how she held the small pencils in the pews as she worked through a seek-and-find
  • how she turned the pencil around and around in her fingers in one hand
  • how she intertwined her fingers as she prayed.

Following along and singing the words of hymns were the result of years of inclusive schooling and work at home teaching Juliet to read. Those fine motor moves – holding a pencil and twirling it – were the result of hours and hours of occupational therapy. As Juliet sang and prayed aloud, I also thought how the first way she communicated with us was using her hands for sign language.

When Juliet was born and her pediatrician talked about the single palmer crease and small pinky fingers associated with Down syndrome, that became my focus. But, now, 10 years since her birth, I notice those characteristics very seldomly. Instead, I marvel at all the things her small, soft hands can do.

I suspect that’s the case whenever a diagnosis is given. A diagnosis is reductive. Before the diagnosis, your child is this being of unlimited possibilities. You spend your days dreaming about what he or she may do. After the diagnosis, your child is reduced to being just the medical condition, and the possibilities seem limited.

But, given time, the fullness of your child returns. The diagnosis just becomes another part of her, but not the defining part of her, and you again marvel at all your child can and will do.

My daughter’s hands told us about her having Down syndrome. They tell us so much more than that now.

This post originally appeared on Down Syndrome Prenatal Testing.

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