"When my youngest daughter was diagnosed with Down syndrome shortly after she was born, it felt like our whole world was turned upside down. We were under-informed about her condition and frightened by what we did not know (which turned out to be a lot). The Internet was, of course, happy to oblige our late-night Googling with a whole host of harrowing health issues, future learning challenges and expected delays, and things like ‘life expectancy,’ which no parent should have to think about in the first days of her child’s life. I was absolutely and unconditionally in love with our girl, but at times I was in a panicked state of paralysis about what lay ahead. The Internet, though, changed all of this.
I discovered hidden online communites—Facebook groups, websites, blogs—a multi-layered, interconnected, human network of people whose lives have been impacted by Down syndrome. Now my daughter’s future didn’t seem so scary, and I didn’t feel quite so alone. I subscribed to blogs, I ‘liked’ Facebook pages, and I created a new Pinterest board devoted to Down syndrome. My newsfeeds started to fill up with images of kids whose features reflected my daughter’s, with advice from those more seasoned in the kinds of challenges we might have to navigate. I read stories of individuals with Down syndrome doing everything from going to college, to starting a business, to getting married.
The Internet is an infinite source of information. It is helpful, yes, but at times cold, overwhelming, and misleading. The Internet is also a collection of stories, and storytelling is the oldest and most profound way we have to grapple with understanding the human condition and making meaningful connections."