The leading human rights organization for all individuals with Down syndrome.

National Down Syndrome Society
8 E 41st Street, 8th Floor
New York New York 10017
[email protected] 


When I taught fifth grade, my favorite subject to teach was writing. In teaching story-writing, there're a few elements of a good story I wanted my students to know. One of these is a transformation of the main character. "Great stories," I told my students, "have an Aha' moment, something that happens that changes the main characters so that, by the end of the story, they are different." Little did I know then, I would be an example a character in my own story, blissfully living through my twenties, serendipitously embracing my thirties without any inclination of the climax my story would take at thirty-one. It wasn't even a month after my thirty-first birthday when I breathed through contractions and gripped the bedrail in the sacred space of the room where I birthed my second daughter. When I reached to grasp the wonder of her flailing six-pound body and brought her close to my breath where I could whisper "Happy Birthday," my heart stopped. My story climaxed. My world transformed. My beautiful Nella Cordelia had Down syndrome, and I knew it. That's about the only thing I knew though, and the despair of that moment was soon brightened by all the things I didn't know. I didn't know I could learn so much from someone so little. I didn't know that when it seems everything you've built up in life has been torn down and left bare, what is rebuilt in its place is even better. We are eight months into this new journey eight months that began with many tears but that have been healed with more genuine laughter, a broader perspective and a deeper meaning of life. While I thought so much of our world would have to change, I realize, so much has stayed the same. I, on the other hand, have transformed. I am learning to find more beauty in life and not to look for it far away, but to find it near me. And Nella? Nella is a perfect, funny, soul-satisfying baby who reaches for our faces and belly-laughs at peek-a-boo. She adores her older sister, sits up with impressive strength and wakes up every morning with magical wide-eyed wonder. She has fulfilled all the dreams I thought a second daughter would bring and then some. Each and every member of our family possesses unique qualities, and having Nella has revealed so many of these. We are complete. She is just what we needed, and the future for her is just as unknown as it is for any one of us, but I have a feeling it's going to be good. Great stories are eventful, and not all those events are pleasant. But, the combination of good and bad and painful and challenging, mundane and riveting is what transforms characters to be something better to reach their greatest potential. Our story is not over, no. But our story is great. Our story indeed is great.

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