Don't know what to say

I wonder more and more lately what to tell my other kids about Finn. Kevin knows that Finn had Down syndrome. Being that he's going on 12 years old, he's definitely more aware of things, and had a lot more questions than the other kids did when Finn was in the hospital. I think that's when we told him, back then. He was somewhat familiar with the term "Down syndrome," as he had just recently read a story which featured a boy with DS who couldn't swim and was saved from drowing by a pig (apparently a true story, by the way). But de didn't know exactly what Down syndrome meant, so I explained to him in very basic terms that it's a condition that some people are born with and that it usually makes them look a little different than most people, and that it often made these people learn how to do things a little more slowly than most people.

Kevin has worried over Finn a lot. I think the whole hospital ordeal was as traumatizing to him as it was to us. When Finn finally came home from the hospital, for a while Kevin was worried when he went to bed each night that Finn wouldn't be here with us in the morning, that he would be back in the hospital. And at one point, a few weeks ago, he asked me "Is there anything else wrong with Finn besides the Down syndrome?" So I told him about the hole in Finn's heart, and the fact that both of his testes are undescended (Michael didn't think it was necessary to tell him about that, but I feel better having it out in the open since it's something that's going to require further medical management which will likely precipitate more questions from Kevin, so why not just get it out there now since he's asking?). And I told him that we're hoping that neither of these things is serious but that we have to have special doctors look at Finn because of these conditions and that he may or may not have to have more surgery, we just don't know.

So Kevin is aware of these things. The other kids are not. They don't even know that Finn has DS, although we are very open about it and the term is an often-heard one in our house (I'm a little surprised that Joey hasn't asked what Down syndrome is).

I'm finding that, with respect to the kids, talking to them about Down syndrome feels a lot like talking to them about sex. Where do you start? And when? How much or how little do you tell them? And, boy, it sure feels uncomfortable.

I've always been a firm believer that it's best to answer kids' questions as they ask them, honestly, but briefly, without giving more information than they can deal with. I've had that philosophy about sex, religion, death - all the sensitive topics. But for some reason I'm feeling unsure of how to handle the Down syndrome talk.

The thing is, they're not asking. Joey, surprisingly, hasn't asked what Down syndrome is. He knows that Finn was in the hospital after he was born because he had to have an operation on his tummy. Daisy and Annabelle, who are almost 4, know that as well.

Now we have people coming to the house - physical therapists, Finn's service coordinator, and there will be more as time goes on - and the girls seem to think that everyone who comes to "look at Finn" must be a midwife (gotta love that mentality!). I'm not sure how to explain to a couple of 4-year-olds what exactly these people are and why they're here.

I'm torn about what to tell the younger kids. Do I wait until they ask specific questions? Won't they notice if/when Finn starts showing developmental delays? It's funny, because they all have already labeled him "smart" because he can roll over. "He's a smart baby," they all say. And when they say this, a little piece of my heart breaks. I, too, want to believe that he's smart. But the books tell me that he's mentally retarded. How can that be? And how do I tell his brothers and sisters that? Or do I not tell them and let it take care of itself in time? And if I do that, will they feel like we kept something huge from them?