Julianna’s Fan Club

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Julianna after heart surgery, age 6 months: Possibly the only time in her life she left a hair bow in her hair.

Julianna after heart surgery, age 6 months: Possibly the only time in her life she ever left a hair bow in her hair.

The first few times it happened, I was disconcerted. Whenever I would take Julianna to Target or the grocery store, people would do a double take. As in, stop the cart, turn around and stare.

Oddly, I never found it offensive. It’s all in the body language, and the body language in these encounters was not one of revulsion, but awe.

It took a while for me to realize that what was making these people disobey every law of common etiquette was the fact that they knew she had Down syndrome, and yet she was beautiful. Because our cultural standards of beauty make no room for someone with a flat face, extra skin at the back of the neck, a tongue too big for her mouth, and rounded, tipped eyes.

Christian & Julianna, Sep. 2007And yet, from day one, something about Julianna has drawn people. As she got older and began charging down the mall corridors shouting “Hi! Hi! Hi!” to people, I began to see her magnetism manifest differently. People become invested in her very quickly. When she moved up to kindergarten, she took her school by storm. By the time I came to school for my first visit, to make her sit still and behave for a hearing test, I was the tagger-on to her wagon train of glory. As I took her back to her classroom, half a dozen kids (not in her class) and every single adult we passed greeted her by name. Mind you, she’d only been in this school for a few weeks.

A few weeks ago,  year, her para greeted me with, “If you ever come pick her up and she’s not here, it’s because I stole her and took her home with me. I just love her!”

The thing about Julianna is that she doesn’t let you sneak by without acknowledging her. She loves people and she loves her life, and she wants everyone to share the experience. So wherever she goes, she leaves a trail of smiles, of people whose legs are tingling from her hugs and, I would bet, whose hearts are a little stirred up by her attention.

1st day school 019 smallI’ve heard this sort of thing said about people with Down syndrome before, but seeing it in action is a whole different thing. We’re not a terribly “touch”-y society, obsession with sex notwithstanding. We like to keep each other at a distance. Maybe it’s that whole “rugged individualism” thing, or perhaps it’s our history as a British colony.

But those rules don’t apply to Julianna–probably because she won’t let them. As a parent I’m always caught between the desire to teach my daughter that the rules apply to her, too and the wonder of seeing what a leavening influence she has on the world.

I never want my kids to bother other people, but she is such an ambassador for Down syndrome, and that’s something the world sorely needs. We need to be reminded that there is beauty and value in every person, simply because they are people, independent of their IQ or their potential to achieve. We need to be reminded that every person has a contribution to make to the world, not just those who are conventionally beautiful or talented or book smart. And that perhaps, in the end, those other things aren’t even as important as the ability to connect and to throw one’s whole heart into loving others.

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11 thoughts on “Julianna’s Fan Club

  1. Spencer Samson

    Kate
    You will never understand how Julianna changed my life. She is a doll and taught me more than any other person has.

      • Spencer Samson

        I cannot figure out how to message you on Facebook!!! Please message me because I want an update on my kiddos

      • I can’t figure out where you went on FB either. We used to be friends, but you’re not showing up now. Maybe it’s the name change? Do you still have my #? I don’t want to post all this publicly but if you call me we can find e/o. 🙂

  2. Mary Micaela Wright

    Oh Kate, You have such a beautiful view of your world. You brighten mine just by sharing your heart with the rest of us!

  3. barbaraschoeneberger

    I’m a Julianna fan, too. She is most definitely an extrovert with the capacity to bring joy to others. Our world really needs that. In being the way she is, she validates every person she meets as a human being, somebody who matters. People are crying out for that these days.

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