Posts from — August 2008

Whenever we’re out and about, for the most part Archer’s a very peaceful, quiet little guy. But he “talks” a lot when we’re at home, like he’s got some stuff to say and he needs to get it off his chest. This little episode came about while his mom and grandparents were out of the house sometime last week after a veritable slew of visitors and we were alone for the first time in quite some time:

I wonder sometimes these days about posting videos on the site– with still photos, it’s easier to edit, easier to pick out the things that make him seem cute or perfect or… I don’t even know, somehow not a typical T21 kid…or, if I’m honest with you, internet, not a kid with Down syndrome at all. Every once in a while it hits me that I’m posting this stuff out here for the world to see and not everybody’s going to see Archer the way that I do — as the perfect budge that he is. When it’s just us in our bubble — our house, our family, our friends — I can almost forget sometimes that he’s different, that he’s not doing the same things that other kids his age are doing, that he’s just going to see the world in a slightly different way. And while I try to think of ways to describe how other people might see him, I can’t even begin to figure that out.

And while that worries me some, I think it would be far more of a disservice to him to try and hide, to not put this stuff out here, to not show him off. ‘Cause amy and I are proud of him every day, even on the days where we get frustrated with the fact that we have to think about whether or not what he’s doing or how he’s playing is going to benefit his development, or — like today, he just really felt like flapping his arms a lot — if he’s doing something that might indicate something was wrong, even though 99% of the time it’s just him checking things out, figuring things out. Because really, he’s exactly where he’s supposed to be and doing whatever it is that he needs to be doing, no matter how difficult that can be to accept sometimes.

It’s like we live every day forgetting to breathe to our full capacity, because we always want to have a reserve of air in our lungs for when that next crack in the dam appears and the water comes crashing over our heads. It’s not a thing that’s easy to describe to people without feeling like you’re just complaining, without once again trying to dismiss it by saying, “oh, but there are so many people out there that have it much worse or who have gone through so much more.” And of course that’s true, but that doesn’t mean it doesn’t suck around here sometimes. It does mean that nearly every day, at some point, even if just for a second, we wonder if we’re going to go under from the challenges he and we are going to face for, well, the rest of our lives.

The crack that appeared yesterday was the realization that there’s a possibility that Archer isn’t going to speak — I mean actual words, not the wonderful babble up in that video — until he’s 4 or 5 years old. I was reading this and it hit me that we’re going to probably deal with a delay of this type as well. It’s so easy to forget or deny these things when you’re trying to deal with the one day at a time– which is the way that this stuff (and life) has to be dealt with, really, but that sometimes makes these brief glimpses into the possible future even more of a sucker punch.

And it’s not the act of speech so much — though it’s that, too — but more the fact that he’s going to have all these things that he’s going to want to say and that I’m going to want to listen to…and he might not be able to get it out. I’m sure we’ll find alternate storytelling methods and I know already that he’s going to teach me some new languages and new ways to express stuff, but, man, sometimes it would be easier for us all if we didn’t have to learn all new methods for everything.

And this started off so innocently as just a cute video post ’cause I hadn’t done one of those in a while…