This past weekend was an example of mild anxiety that lies beneath the surface.
I had wonderful events planned with my daughter. First, The Three of Us went to an annual Hawaiian dinner at a Buddhist temple/community center where we find many friends, including the parents of our daughter’s pediatrician. It has become a family tradition since we moved to Hawaii more than two years ago, and it was our first “third” annual anything in Hawaii.
Last year at the dinner, we were soaking up compliments about our gorgeous daughter when an elderly gentleman nodded to Ben and me, and Ellen well within earshot, and said, “I have the same problem. My brother has Down Syndrome.”
I gasped quietly but immediately said, “It’s not a problem. She’s amazing. We don’t say Down Syndrome. We say extra chromosome.” He frowned a tiny bit. I later mentioned the brief exchange to the mother of my daughter’s pediatrician who knows Ellen quite well. She said, kindly, warmly, to let it go, that he was from a different generation.
When we returned this year, I had let it go. I held my breath a little during the event, including when people asked about Ellen’s schooling, but my faith took over, Ellen was everything a parent would want, and we all went home and dreamt beautiful dreams.
Today I visited our “home” temple where Ellen also goes to the Buddhist version of Sunday school. Ben and Ellen had gone shopping.
A very kind woman made a point of introducing herself to me, telling me how much she admired our family … and that she had a 50-year-old brother with Down Syndrome who never learned to speak clearly.
I took a half-deep breath. I thanked her for approaching me, for her kind words about my family. I told her I usually say extra chromosome rather than Down Syndrome, how extraordinarily lucky that Ellen has had very few health issues, is fully mainstreamed in her first grade, is growing up in two languages, and will go to college some day. My words came in a rush, but a controlled, soft rush. My new friend said, yes, she has listened to Ellen speak and is very impressed. She said there are many more opportunities for Ellen these days than there were when her brother was growing up. We hugged.
Before I left her company, I mentioned that raising our child is mostly like parenting a child who has the standard number of chromosomes. I said most times I just think of Ellen as my bright, beautiful girl.
So when I took Ellen to a museum later in the afternoon and she introduced herself to three families we had never met before, I was curious to see how the moms and dads and children might look at her and talk to her and about her. I was also noticing how much closer than usual I was paying attention to Ellen’s facial features that bespeak an extra chromosome although I find everything about her stunning.
The other parents did not mention Ellen’s extra chromosome, nor ask about her schooling. I kept waiting. Instead, they talked about raising their children in two languages after they heard me speak German to Ellen. I made some new friends, and Ellen enjoyed a very satisfying two hours at the museum. It almost felt normal, but I reckon in some ways I’ll always be holding my breath a bit!