But before that, I decided I need to give Toby the what-we're-doing-on-Saturday briefing. I'm not sure exactly why. I suppose I want to make sure that he feels comfortable asking questions.
Probably, if I'm being honest, I'm worried that Toby will say or do something that will embarrass me. That's unfair of me, I know. And most of the time I try to just let things be, and wait for Toby to bring up his questions on his own. But two days before we were going to a big old celebration of Down syndrome, I found myself trying to explain this all to Toby, again.
We told Toby the words "Down syndrome" as soon as Max's diagnosis was confirmed. Unfortunately, at the time, tiny Max was still in the NICU, and Toby wasn't even allowed to visit him. After months of waiting for his new brother, Toby was getting passed around to friends and relatives while Christer and I visited Max in the hospital. Poor kid, he associated the words "Down syndrome" with the sickness that was keeping Max away from home. It took months for his young mind to untangle "Down syndrome" from those first few scary weeks.
I'm still uncertain how to explain Down syndrome to Toby. There are lots of cute little books out there, and little videos and whatnot, that all explain that a kid with Down syndrome is "just like everyone else." Toby finds these boring. He knows that his little brother is just fine. And I'm hesitant to explain Down syndrome in a way that will color the way he thinks of his brother.
So yesterday we watched this video. It's a fabulous video, and I would recommend it to older kids and teenagers. But really, Toby is still to young. Again, like the everyone-is-the-same children's books, he was just bored.
So for now, Toby knows that Max has Down syndrome. He knows that this involves Max having 74, or maybe it was 47, of something or other. He knows that it will take more work for Max to learn some things that were easy for him. It took Max longer to learn how to breathe, and that is why he was in the hospital. It is harder for him to learn to sit, crawl, and walk, and that is why a teacher comes to work with him once a week.
He knows that tomorrow some of his friends will come walk with us at the Buddy walk, and that hot dogs and cupcakes are involved. He's excited to wear his new T-shirt.
And I am trying to remember that really, there's no need for me to worry about this. Toby is going to understand Down syndrome better than the rest of us. And someday he'll find this blog, and he'll probably think all this fuss about nothing is boring, too.
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