Then and Now

A year ago on this day, I wrote this entry: Joey Knows. I remember being very concerned back then about how to talk to my kids about Down syndrome, how to explain Finn's differences to them. I just wanted them to love and accept him, and not see him as different. But I also felt that they needed to be armed with the knowledge that he is different. So difficult, sometimes, to strike a balance . . . to even make sense of what's in your head and what's in your heart, and to reconcile the two.

So the kids have had a whole 'nuther year to get to know Finn. They all know that he has Down syndrome ( . . . well, except Lilah; we've never talked about it to her because she's just too young for it to have any meaning for her). What that means to each of them is hard to say.

Kevin, the oldest at almost 13, obviously has a better grasp of it than the younger kids. But it doesn't seem to impact Kevin to any great degree. He doesn't tolerate the use of "retard" or "retarded" by his friends or schoolmates. He's very loving and affectionate and protective of Finn . . . but I really can't say for sure how much of that is because he knows Finn faces certain hurdles and challenges, or just that Finn is the baby of the family and therefore is subject to babying by every one of us.

Joey . . . Joey's funny, that kid. I think he's still grappling with what exactly Down syndrome means. He has this fact that he's been given: your baby brother has something called Down syndrome, which means that it might be a little harder for him to learn things, and it might take him a bit longer to do certain things. What it means in reality to Joey is anyone's guess. I don't think he truly sees anything different about Finn than any other baby. I don't think he notices that Finn is taking longer to get to certain milestones. Why would he? He doesn't have some developmental calendar in his head. Finn is just Finn. But he did ask me once, not long ago, "Mom, when Finn grows up, will he be able to take care of himself?" Ahhhhh, that stabbed me in the heart a little. That is the question, isn't it? "We hope so, Joey," I told him. Joey also tends to see Down syndrome where it doesn't exist, which can make for some tricky situations. The twins are in a gymnastics class, and a couple weeks ago, Joey went along to watch. There is a little boy in the class, and Joey said to me from the sidelines, very loudly, "Mom, I think that boy has Down syndrome!" He clearly did not have Ds, and we were sitting right next to the boy's mother. I shushed Joey and wanted to crawl under a rock. And I've been thinking about it ever since: how can we impart to him that Down syndrome is okay, that it's not a bad thing, while at the same time admonishing him for wrongly thinking someone else has it? Hmmmm.

The twins know that Finn has Down syndrome, but I truly don't think it means anything at all to them. He's just a baby. To them, Down syndrome may as well be the same thing as Finn having blue eyes. I overheard Annabelle singing to Finn once, a little made-up song, that went something like this:

You have Down syndrome, little baby

And you'll have it for your whole life.

Lalalalalala.

It wasn't mean at all, she was being very sweet to him. I think Down syndrome is just a completely abstract and incomprehensible concept to her.

And Lilah, well, she just turned three. Finn is "the baby." Period. She adores him.

They all adore him. I don't think they see him as different in any way. In time, I'm sure they will. But for now, they don't. And I'm glad.