When I first learned about the possibility of Johnny having Down syndrome, it was hard to say. I would mumble "chromosomal abnormalities, like Trisomy 21" and if the person I was talking to didn't know what that was, I would look down and whisper, "You know, Down syndrome". I don't know if it was shame, or if I always said it that way, or if it was just another manifestation of our fear. I do know that it felt better to talk to doctors, nurses, or others in the medical community because I could say "T21" and they knew right away, no questions asked, no further probing needed. Later, I managed to get it out without the prerequisite other terms, but I would still choke on saying Down syndrome. It got easier each time and holding my son and feeling proud of the little man he is certainly helps me say it.
I still have the little mental dance about when to tell someone and when to not. I want it to seem fluid and natural. It's not like I start conversations or introductions with "Hello, my name is Ashley, this is Johnny, he has 47 chromosomes while I only have 46". Today, someone was asking about if Johnny was crawling yet and it came up very naturally for me to explain no, that he has Down syndrome so he is delayed in some aspects of his development. It was so easy! I think it was the first time I was able to say it without the lump in my throat and the worry if I should say something at all. I did hesitate for a split second, but not long enough that there was any pause in the conversation. It means a lot to me that it becomes easier to say. I don't want to whisper in hushed voices about the things that effect my son. A year ago I never thought I would be in the place that it would be so easy to say the words. So kudos to us...my son has Down syndrome.