Sometimes I forget about Penny’s extra chromosome. A lot of
the time, actually. When we’re with my family. When she’s being William’s bossy
older sister. When she and I are cuddling on the bed and she asks me to tell
her stories.

But then it comes up. Take yesterday, when we were at the
beach with a bunch of other kids and Penny just couldn’t quite keep up. She tried
her best for a while–running, jumping, making “sand angels”–but she ended up by
my side, with another little girl’s flip flops on her feet (she’s obsessed with
other people’s flip flops at the moment). I noticed that extra chromosome
again, in that same outing, when two people walked into our view. She noticed
the woman in the wheelchair instead of the little boy with the popsicle. The
other kids around us only had eyes for the orange sweetness that dribbled down
his chin.

And again last night. She was crying in her sleep. I could
only guess why–a nightmare? A stomachache? I rubbed her back and came close to
shedding tears of my own. It was one of those moments when I was reminded that
her life will carry with it hardships. That she struggles to learn how to swim
and do buttons. That simple tasks, like writing her name, tire her out. That
other people have trouble understanding her speech, even her mom and dad
sometimes. (In a characteristically generous moment, Penny clapped for us
yesterday when we understood what she had been trying to tell us for, oh, three
or four days running. “A frensher” was what Peter and I heard. I finally
figured it out: “adventure.”)

I could say that yesterday I was reminded of Penny’s
disability. But I continue to bristle at that word. Penny is not like a car on
the side of the road that needs a mechanic before she can keep going. She just
has to work harder to get to her destination. So the word I am thinking about
today is vulnerable. The dictionary
defines it as “capable of being physically or emotionally wounded” or “open to
attack or damage.” And those things are true. But I think vulnerability moves
in another direction as well. Penny is open to wounds, yes, but she is also
open to joy, to relationships, to love. I can’t do as much as I would like to
protect her from the hurt she will experience in her life. But I can sit with
her when the other kids are running around, rub her back when she cries, and I
can be grateful for the look of concern in her eyes when she sees someone in
need. Her vulnerability isn’t easy, but it is a gift. 

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