Pride and joy

Today is Blog Against Disablism Day (really? We're calling it "disablism"?), so I wanted to offer a bit of what's on my mind lately as I think about the experience of being Maybelle's parent.

Smiling at DaddyWhen Maybelle was first born, the idea of Down syndrome was terrifying to me. I didn't know anyone with Down syndrome other than Maybelle, and I had no real information about it, just the clutter of familiar (and distressing) stereotypes. I had a recurring freak-out that lasted for the first month or so that she was alive--Biffle had to keep talking me down, reminding me that I can and do rise to any challenge, and that we would take the challenges with Maybelle as they came, together. Fortunately, he'd had his recurring freak-outs while I was pregnant, and once Maybelle was born he was blissfully in love with her and unconcerned about the future.

As is often the case for me, education was quite helpful. Reading recent literature and talking with parents of kids with DS and with Maybelle's early interventionists cleared out the stereotypes. It turns out that many of the things I worried about (She'll never live on her own! She won't be able to go to school! She'll have to work as a greeter at Walmart!*) aren't true anymore for people with DS.

Of course, her life will be a bit different from the lives of many typical kids. Immediately after she was born, one friend wrote in an email, "Many things she'll do will take longer than average to do, and those victories will be all the sweeter for it." At the time, I read that as such a sad thing--the idea of the victories being sweeter really struck me as bittersweet, like we would be continually resigning ourselves to her lessened status, continually having to try to be happy with what little she could accomplish.

I am very happy to report that, eight months in, Biffle and I are experiencing very little sadness and mostly tremendous pride and joy. "Lessened status" doesn't in any way describe Maybelle--and I would be enraged if anybody implied that it did. She has to work her little butt off to accomplish some things that just happen naturally for other babies (rolling over, for instance, or the recent innovation of learning to prop sit), but she does it, she continually works and learns and gets stronger. And the fact that it does take her a little longer, and require a bit more intention from everybody in the family than might be true for a typical kid, means that Biffle and I are very aware of her progress. My friend was right--watching her grow is incredibly sweet for us.

*That one was actually Biffle's fear. From the first I've had hopes that she'd be a bass player for a punk grrrl band. Or perhaps an activist for people with disabilities.


seahorse said...

Your pride in her shines through and it's lovely to read

Kevin - MySpellingSucks said...

From my experience with my daughter who has CP and is now 6. Your friend is without a doubt and it's amazing how many victories you'll get to celebrate. At some point you will get the opportunity to look back and realize that your weren't even sure you could get to some and now your way past it. Enjoy the wonderful trip.

I posted a blog for BADD as well but you might be interested in one I did a few days ago. Here is the URL Seven Years