How My Child With Down Syndrome Changed My Perspective on Diversity
Before I was pregnant with my son, Augie, I had only met one person with Down syndrome. My limited experience, both in breadth and depth, resulted in stereotypical perspectives of Down syndrome molded by general information anyone could find on Google. It wasn’t a negative perspective; it was just narrow and lacked any real substance. I had a textbook understanding.
And then I had Augie.
In the early hours after his birth, I studied his facial features and his tiny body, looking for all the characteristics I read were typical of Down syndrome. Instead, I noticed how his mouth was slightly open and his lips pursed as he slept, reminding me of his big sister and daddy. I noticed how his hair stuck straight up. I noticed his cute button nose and chubby cheeks. His expressions reminded me of his big brother. My heart fluttered as he grasped my finger with his itty-bitty hand. I gently kissed a soft fold on the back of his neck as he rested skin-to-skin on my chest. That extra kissable skin on his neck is characteristic of Down syndrome, but I no longer thought about it that way. He was just Augie.
I relished in the beauty of my son. And in those early hours, my fears and worries of what it would mean to have a child with Down syndrome melted away. He was my son. I felt joy. Down syndrome was and will always be a part of him; his extra 21st chromosome is attached to every cell in his body. And that is amazing. Amazing too that his extraordinary genes are also hugely influenced by his father and me. This was something I was uncertain of before I had Augie, and became clear to me as soon as he was in my arms.
Now, almost a year later, those feelings for him have only intensified. I love the characteristics that beautifully connect him to a community of individuals with Down Syndrome. Like his eyes. They are the most beautiful eyes I’ve ever seen. A deep blue color somewhere between his daddy’s icy blue eyes and my dark blue eyes and slightly almond-shaped like so many of his friends with Down syndrome. The likeness of the Down syndrome community is beautiful.
But it’s the diversity that is magnificent.
Diversity not only in physical characteristics, such as facial features or body shape, but also in personality, abilities, experiences, interests, challenges and successes. This was the perspective I was missing before I had Augie. Now having the privilege of personally knowing many individuals with Down syndrome, including my own son, I get it. I get what I was missing before. Augie is just Augie. There is no textbook, Google article or even doctor who could predict what my son would be like. Generally, maybe. But it’s the intricate details that make him who he is.
There is only one Augie in the whole world, and I love him to pieces. I love everything about him. Not everything is always easy, there are very real challenges — but there is also very real joy. I would choose him and this life a million times over.
Diversity is the beauty and strength of this world.
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