A while back, my daughter Sharaya wrote something on her blog The Broken Anthem that I haven't stopped thinking about. She wrote, "Unlike my parents who knew a life before Down Syndrome, I have been surrounded by it my whole life." I've never thought about it like that before.
I grew up in San Diego. It is warm and sunny 360 days a year. We were outside all day, every day playing jacks, chinese jump rope, riding our bikes. We played until the street lights came on. There was hide and seek, tag. No one I knew had Down Syndrome. I didn't even know the word existed, let alone what it meant.
There was a family who lived across the street who had a child with a disability. My mom told me that when Teresa was about 2, they found she had moderate hearing loss. (She hears fine now, although she is mildly delayed.) I remember waiting for Teresa to get home from school so we could play together. Our families would go camping together. I don't ever remember thinking Theresa was different. And Teresa and I are still friends today. We send birthday cards and Christmas cards and I try to see her whenever we visit San Diego. Growing up, she was the only person I ever knew who was handicapped. Yet I don't ever remember hearing her described that way. She wasn't handicapped. She was Teresa.
And by Jr High I had still never heard the words Down Syndrome.
Jr High and High school bring memories of broken arms, home ec classes, drill team, football games, Saturday Night Live, the beach and shaving cream fights. Not Down Syndrome. Although I do find it interesting that I got C's on all my Biology papers. Except the series on Genetics. I aced that part.
After High school I got a job at Woolworth Department store. I still remember being in the jewelery department one day watching a group of young adults. They were from a local group home, everybody knew about it. It may have been the only one around. Obviously they were on an outing to the mall that day. All of them holding hands, walking orderly through the store. The attendants keeping a sharp eye on the line. I don't remember really feeling anything. I don't think I felt sorry for them. I just remember watching them.
I was still working at Woolworth when I met Chuck. We got married.
Then I got pregnant.
That's when Down Syndrome entered our world.
I don't want Down Syndrome to define us. But it does. It's as much a part of our family as the color of our hair. Or lack thereof for some of us. Okay one of us. :)
Down Syndrome changes you. It changes the dynamic of your family. As the saying goes in our world, we live in Holland! We shop here. We empty trash here. We do our laundry in Holland. We will always be in Holland. I'm going to talk about Holland. I'm going to complain about Holland. I'm going to wish that sometimes I wasn't in Holland. But the bottom line is, I absolutely love Holland! I wouldn't WANT to live anywhere else!
Yes, I knew a life before. But Sharaya didn't. We come from two different places and our stories are different. One day I arrived in Holland unexpectantly and chose to stay. Sharaya was born here.