October is Down Syndrome Awareness Month: Time for me to wake up

I guess I’ve been in a slumber.  I’ve been struggling, just a little, with all that’s going on with my kids.

I feel like an idiot.

I knew what full inclusion meant, and yet, I didn’t know.  I think that until this year, I really thought Amelia would only be a little bit behind academically, and that, ya know, hard work and focus would… well..

Ah hell, I don’t know what I thought.

I’m not supposed to care how she develops intellectually. I’m supposed to walk around and be grateful that she doesn’t have the heart condition so many kids with DS have. Or celiac disease (12% of kids with DS).  Or autism (not sure on the numbers on that, but seeing way too many links for it to be all that rare).  Or a billion other things that  could be wrong.  And I am, but…

I’m supposed to let it be enough that she has this dynamic personality, that she has this kindness about her that the rest of us lack, that that so much is fantastic to her, that growing up slower than other kids has its advantages. Yea, I am, sort of…

I’m supposed to not worry that she’ll be suckered by strangers, or bullies, or rip off artists, or horny teenaged boys or men, or by Nigerian email scams.  The future is a long way, and we have worries enough for the day, I guess, but…

[Letting out a big sigh...]

So maybe I’m sad that graduation won’t mean what it means for the other kids, or that it’ll take her a lot longer to share my passion for reading, or that “A’s” and honor rolls are just not in the cards.

I’m thinking of a woman who was in Bible study last night, talking about her Marine son and how she could never contain him, not ever  A top flight, super-achiever, make-any-mama-proud type of kid, and she said,  “He’s just on loner from God.”

My heart softened at that. That’s Amelia.  She’s are not mine.  She belongs to God.  And Him I trust.

But dammit, I still hate Holland.