After Pacey was born and I went back to work, I kept feeling the need to tell people about him. Partly, I guess, because my world had been so soundly rocked by his early and somewhat traumatic birth and it felt almost impossible that the rest of the world was business as usual. But also partly because I wanted to protect myself...give people a heads up that there was a new way they could offend me without meaning to. There is a disheartening number of educated and generally kind, good people that include the words "retard" and "retarded" as derogatory terms in their everyday language (more on that in another post), and I regularly hear people make jokes about being "special." Particularly in those early days, before I'd had a chance to thicken my skin, these jokes and references hit hard.
As much as it was on the forefront of my brain and tip of my tongue though, it felt strange to just blurt out that I had a tiny new son who happened to have Down syndrome. One day during the time period in question, I was meeting with a doctor, an obstetrician who was...eccentric shall we say. He was a well-trained physician and clearly cared about his patients but he had little social filter and regularly said mildly offensive things on a range of topics. I was on edge for much of our meeting and towards the end, he started telling a story about a patient he'd had with six children, the last of whom was diagnosed in utero with Down syndrome. My stomach dropped and I thought "here it comes." I expected the worst from this anecdote, but instead he told us about seeing this mother at a post-partum visit and checking in with her about the baby and how things were going. Rather than express disappointment or fear, this mother said to him "I've got five children who will grow up and leave me. But this one, this one I get to keep."
It was entirely coincidental, because I hadn't ever said anything to this doctor about Pacey; inadvertently he had provided me with a new perspective, one I hadn't considered. And while both Chris and I hope and believe that Pacey will achieve a level of independence, we expect that he will always live close to, if not with us, and in some ways he will be the one we get to keep.