Joanna shares some feelings ...

There’s a lot more to this than I feel comfortable sharing at the moment, but here’s the basic idea: having a baby who was in the NICU for so long, and who can’t really go out in public too much yet, has not served to decrease my natural introversion, solitary inclinations or anti-social tendencies. I generally keep to myself anyway, but now there is an additional distance from the other parents we know, parents our age who have kids Simon and David’s ages. Simon and I were in a big group of them on Saturday, and both the parents and the kids are wonderful/nice/friendly/everything, but I don’t really feel that I belong with them anymore. I didn’t talk to any of them very much, just kind of hung out with Simon (who is having his own socialization issues at school). …

Perhaps I am making too much of this, and/or it will be a feeling that will be stronger at some times than at others, but right now it’s pretty strong. There is sort of a feeling that it is Matt and me (or perhaps just me, he tends to get along with people better) against the world, you know? That no one else will ever understand what our family is like. … When it’s just David and me, I simply enjoy playing with him and watching him grow and develop, and I don’t worry about much. But when I’m in a big group like that, all I can think is, “I am the parent of a child with a developmental disability. None of these other parents, even if their baby was in the NICU for awhile, or has some health problems, knows what that is like.” And I know that’s not fair, especially since I don’t even know what it’s like, much, yet. And for the most part, so far, it’s pretty much like taking care of any other baby with medical issues – meds, nebulizer, special formula, etc. But there is that extra (mental retardation) part that (for me, for now) creates that extra space between me and the next parent in line. That’s the distance, that’s the space – the gap between the words “mental” and “retardation.”