Is this denial?

Most of the time when I look at Finn, or even think about him, I have a hard time accepting - or believing, I guess - that he really has Down syndrome. Those "classic" DS facial features are so subtle in him - almost absent. He has other physical characteristics typical of DS: the curved pinky fingers, the simian crease in each palm, the extra space between his first and second toes. When he was in the NICU and the geneticist did her initial visual examination, she said she could make out the telltale brushfield spots in his irises, but only by using her special light - I've never noticed anything about his irises except that they are the most beautiful shade of gray-blue rimmed with deep, deep blue. He mostly looks like any "normal," baby, albeit a small one. Aside from the duodenal atresia he was born with and had to have surgically repaired, he's healthy. He has an ASD, which is not uncommon in the general population, but he doesn't have more serious heart defects commonly associated with DS. He has great muscle tone - normal muscle tone for any baby his age. He does things he shouldn't be able to do as a DS baby: rolling over, smiling, and generally being very active.

So it's hard sometimes to buy into the whole DS thing. I know he has it; I'm not fooling myself into believing that maybe somehow a mistake was made and he doesn't really have it . . . but sometimes it seems like Down syndrome, where Finn is concerned, is nothing more than something written in his medical records. Something that's on paper somewhere, but doesn't actually extend to his actual self. (Does that even make sense?) Sometimes it's hard not to believe, or at least want to believe, that somehow, he'll break all the rules about DS and go through his life like anyone else, doing the same things, with all the same capacities.

Is that denial? Or is it hope? Or is it some of both? I don't even know. I just know that's where I'm at with it right now.

And I think that this is probably the biggest reason why I have found it so difficult, so far at least, to get involved in any sort of formal support system for families of Down syndrome children. There are all kinds of support groups out there - actual, live ones, as well as internet based message boards. I have zero desire at this point to seek out or join a "real life" support group (it wouldn't be practical anyway with how busy I am with a whole house full of kids to look after), and I've spent hours searching the internet for a DS message board that feels like a good fit, but so far nothing does. I don't want to become so consumed with the Down syndrome diagnosis that it becomes Finn's identity, and our whole family's identity. I regularly correspond with a few moms I've developed relationships with since Finn's birth, moms of special needs children themselves, and that's enough for me for now.