3/21 is World Down Syndrome Awareness Day. Why? Well, it’s the numbers. Down syndrome is a trisomy, or third copy, of the twenty-first chromosome, so 3/21 is the obvious choice. If you see someone wearing a blue-and-yellow ribbon, ask them who their chromosomally-gifted loved one is. We’ll be doing things in our schools, workplaces and communities to put our loved ones’ need for support and human dignity in front of everyone we meet. And because it’s what I do, I blog. Today, in honor of 3/21, I’m resurrecting a few of the posts I’ve written since Julianna began rocking our world.
It’s easy to take a snapshot and say that my 13-month-old is functioning at about an 8-month level. It’s much harder to communicate the experience of what those 13 months were like.
It reminds me of that line in Beauty and the Beast: “We don’t like what we don’t understand; in fact it scares us.” And why this lack of understanding? Because in America at least, there is a massive double wall barricading “normal” people from “disabled” people.
…when people see Julianna, they stop, they turn their shopping carts around, they engage in conversation. They stare at her—not an unkind, rude stare, but the hungry stare of people confronted by something so beautiful that it has to be acknowledged, like a rainbow in the morning. It’s not just that she’s a beautiful child, although she is. I think it’s a natural reaction to the discovery of beauty in a place where the overarching culture, in its focus on Stuff, Sex, and Svelte, has failed to recognize it.
A newborn is a newborn is a newborn. A baby with Downs is not born delayed. It starts in exactly the same place as every other newborn. All babies are helpless, all babies do nothing but lie there, sleep and eat and make diapers.
Julianna has taught me a deeper truth: that praise is not about words at all. It’s about opening yourself up to the moment, delighting in what you experience, and allowing the knowledge of the One Who made it possible to intensify the joy.
Everywhere we go, Down syndrome is the topic of conversation when Julianna is around. Like skin color or relative tallness or shortness, DS is what people see when they look at her. But here’s the trouble. When we classify a person on his or her skin color, it’s called racism, and as a society we struggle to remove that plank from our eye. But for some reason, that isn’t true of disability.
Don’t avoid the subject. Just say it directly, without fuss. We are all made up of tiny things called chromosomes, and Julianna has one more than we do. This is called Down syndrome, and it makes her learn things more slowly than you do.
Respect for life is so much bigger than abortion. It’s an attitude that should permeate all of life, in all its forms and manifestations. Prolife politicians are very good at being outraged by the systematic termination of “imperfect” children. But if you’re going to ask people to shoulder the responsibility of caring for children with disabilities, you can’t abandon them once the child is born.