If you ask people who don’t know someone with Down Syndrome to describe what emotions come to mind when they think about Down Syndrome, I bet there are a lot of different answers. I bet you’d get words like “disappointment”, “can’t”, “wont'”, “loss”, “sad” and other words with a more negative connotation. Unfortunately, those without experience don’t often have positive reactions to it.
Those of us who do have experience, however, can share a multitude of words, emotions, experiences and viewpoints that are incredibly positive. You’d actually probably get as many different words as you would people you asked.
For me? The word is “JOY”. Not because I experienced it when I learned of Henry’s extra chromosome No, unfortunately, I took the more traveled road of negative stereotypes at that time. The word came as I grew to know Henry. As he shared who he was with us. As he grew and showed us what Down Syndrome really means. And let me tell you – this “joy” is & was unlike any understanding of “joy” I’d ever had previously. It wasn’t dependent on any outside force or the acquisition of a material good. It was simple and pure – unadulterated joy in being alive. In other people’s smiles. In music. In the way he could move his arms and legs. In just living.
Now don’t misunderstand me. I’m not saying that the “don’ts”, “won’ts” and “loss” don’t exist. They do. There’s frustration and disappointment and stress in that diagnosis as in any other. I’m not saying the negative doesn’t exist. I’m just saying that it’s outweighed by the unexpected & unknown positives that show up after the fact. Honestly – ask anyone who has either welcomed a child with Down Syndrome or who really knows someone with it. They’ll tell you that they’ve been truly changed by that person and they’ll never be the same. They’ll never look at the world in the same way. They’ll never take things for granted or misplace their priorities.
So that’s what I wanted to share today. Joy. Like you’ve never known. Take a few minutes and slide through this show. These are a few of the shots I’ve taken of Henry showing joy. A few of the shots I’ve had the luck to capture.