This month is National Down Syndrome Awareness month. This year I’m joining in the 31 for 21 blogging effort to raise awareness about Trisomy 21. Why 31 for 21? There are 31 days in October, and in T21, the 21st chromosome is triplicated. In the coming days I’ll be sharing about questions I’ve been asked about T21, as well as other topics not related to T21 at all.
This morning I took dd16 and dd11 to a community event for mothers and daughters. A couple of minutes after I walked in, a staff member at one of the schools approached me and peered into the stroller. (Yes, I do sometimes use a stroller rather than the wrap!). She looked at Yirmiyahu and with surprise in her voice said, “He’s so cute!” She had cornered me about a month ago when I was at the school to inquire about if the news she had heard that we had had a baby with special needs was true. At that time I got the impression that she thought this was something hush hush that I should be feeling ashamed or sad about, which isn’t even a tiny bit true. Today she seemed surprised that he was cute because she knew he had T21 and that’s not what she was expecting. (I know, this is my cue to insert a current photo here but I don’t have one so you’ll have to scroll back to other posts that have pictures.:))
I said, “Of course he’s cute!” I had picked him up and she looked at him close up and said, “He looks like a normal baby.” I have an emotional trigger to the word ‘normal’ – does my baby having T21 mean he’s not normal? I replied with a smile, “Yes, he is a normal baby but maybe a little cuter than usual.” ”But he doesn’t look like anything is wrong with him,” as she looked at me questioningly. I could tell she was wondering if she was mixing me up with someone else, so I confirmed for her, “He has Down syndrome.” ”But he doesn’t look like it. How can you tell? There are five signs, right? But I don’t see any signs of it. Are you sure he has it?”
I wasn’t enjoying this conversation from the very first comment and was trying to remain polite. What does she think, that I’m making it up? I told her there are more than fifty possible signs of Down syndrome (maybe more than 100) and which signs people with T21 have vary from person to person. She wanted to know which signs Yirmiyahu had but I thought that was none of her business so instead I assured her that we had done genetic testing and we were absolutely positive that he has T21.
I don’t tell most people that I see locally that Yirmiyahu has T21. Not because I’m embarrassed or because I want to keep it a secret – not at all. I’m very comfortable speaking about it and Yirmiyahu is perfect just as he is. But I know that most people have negative preconceptions about T21 (as I did before Yirmiyahu was born) and I want to give people a chance to appreciate him as a sweet baby without them looking for the ‘label’ when they first see him. Once they have a chance to see him as a baby rather than as a syndrome, then at a later point I can share with them about his diagnosis and then there’s a place for more helpful dialogue.
Today the woman who was looking at him was looking for signs of his diagnosis rather than seeing him as a baby and that bothered me. I know I can’t control people’s reactions and I’m sure there will be many interesting interactions in the future when I’ll be asked about this issue. But I so much wish for now, and even more for the future as Yirmiyahu gets older and it becomes more obvious that he has T21, that people will be able to see him for himself.