It's a refrain these days, "Penny, I am proud of you." I say it when she walks out of school with her thumbs up, an indication that she has made "good choices" today (this after a few days of bad choices, which included yellow paint smeared across her new white shirt, in her hair, on her cheeks...). Or after she tells me she needs to "tinkle on the potty." Or, after she says, "Mom, I will write my name," and sits down to work on those five letters. Or when she hears William crying and walks over to give him a hug. I am proud of her.
A few years back, I was afraid that I wouldn't be proud of Penny. When people saw her, I often felt my eyes darting back and forth as I assessed their impressions. I heard the worried voice inside my head: Is her tongue hanging out of her mouth? Do they think she looks cute? Do they know she has Down syndrome? These days, when strangers meet Penny, I am eager to tell them that she has Down syndrome. I want them to know that she has an extra chromosome. I am proud of every part of her, including, perhaps especially, that part of her that is different from the norm.
Recently, though, I've had to ask the question. Am I proud of her because of who she is or because of what she can accomplish? She's a remarkable little girl, with remarkable "skills" in the lingo of assessments and measurements. She can write her name. She can sing songs. She can follow directions. Are these the things that make me proud?
This summer, I frequented a supermarket where a man with Down syndrome bagged groceries. We didn't ever talk much, but he did his job with care. His movements were deliberate. After years of watching Penny in Occupational Therapy (which works on fine motor skills), I know how much effort it takes to open the bag and place the items inside in an orderly way. I know that coordination and strength are harder to come by for someone with an extra 21st chromosome. I have no idea what this young man could accomplish on a cognitive exam, but I felt that same surge of pride every time I paid for my bananas and he put them in a grocery bag. I was proud of him, and I was grateful to have a daughter who is like him in many ways–kind, hard-working, patient.
Then, this past week, I met three teenagers with Down syndrome. It was hard to understand their words much of the time, though they didn't speak much. They did make noises, and they didn't always look me in the eye when I spoke. It was easy to try to assess them. And by many measuring rods, they would have been found wanting. If I had only been able to see them for a few minutes, I might have felt sad about their lives. I might have thought they were a disappointment to their parents.
But as the night went on, I got to see more and more of their character. Each of them had a gentleness to them, a quiet strength and maturity, even. After a few hours together, there was Sam, walking past, stopping to plant a gentle kiss on my head. And there was Maggie, sitting on the floor next to William. Let me pause for a moment to explain William's temperament. He is intense. Very intense. All the time. This kid doesn't know any speed other than stop (i.e. sleep) or go (i.e. run and climb and get five stitches and run some more). But there he was, lying on his back, with a big smile, gazing into Maggie's eyes. She wasn't really playing with him, just attending to him, caring for him. It was something about her presence that slowed him down, calmed him down, gave him peace that I rarely see.
By the end of the night, I was proud of those three teenagers. And proud that my daughter is one of them.