Hi again everyone. I haven't posted in awhile, but there's a good reason this time, and most of you already know about it. Last weekend I launched Down Town (www.downtownds.com), a Down syndrome news and information site that I hope will grow into a huge and wonderful resource. I've been working quietly on the site for months, along with an animation that explains Down syndrome to children. I'm proud to say it's up and running nicely. It's my first real step out into the DS community, and surely Neil Armstrong never felt such exhilaration.
I haven't had all that much to write about lately. Ozzie was in the hospital briefly for some congestion/breathing issues, but you don't want to hear about that. You want observations, and I haven't had any to share for awhile. Until today.
My site has a cool feature called BlogWatch. It automatically scans other people's blogs for any new posts that mention Down syndrome. When it finds them, it feeds them right onto my site. So it's a nice snapshot of the latest DS discussions and a great way to find new DS blogs. Anyway, since Down Town launched I've been reading those posts, and today while doing that I realized something about myself.
Although most of the posts are written by parents of children with Down syndrome, many fall under an entirely different category. These are posts written by pregnant women who have just received test results that indicate they may be carrying a child with Down syndrome. This news is quite understandably terrifying and heartbreaking and stressful, and these women share it on their blogs (usually after additional tests show that the baby is just fine). Then these women and their friends and families post all kinds of comments:
Oh, what a scare we had.
It was the worst day of our lives.
Surely everything will be fine - the odds are in our favor. Not that we would have considered abortion...
These blog posts cut deep. It's just so hard to read the musings of people who are ecstatic about dodging the life I now have. Odds are, almost all of these people will have healthy babies. And they won't ever really think about Down syndrome again. They will look at my family – and my child – with pity. They will see my family and remember their little scare and they will feel relief.
I think I have handled the whole DS situation rather well. I love Ozzie, I'm happy to have him, and I don't sit and long for the child I don't have. I have never, ever been jealous of anyone else's baby. But this particular category of blog posts, the "relieved mom-to-be," causes some really rotten feelings in my gut. Not jealousy, but anger. I feel like these people have no right to even talk about this world. They haven't gone through boot camp. And I know these feelings are wrong, and I know this is something I have to work through and get past and leave behind forever. But it isn't easy.
So, to all you mothers-to-be out there who are afraid you may be carrying an Ozzie of your own, my heart goes out to you. I know your blog posts aren't even meant for my eyes. I hope your baby is healthy and perfect and beautiful. But I do have one small request. When you find out that your baby is perfect, could you please express your elation in a way that doesn't take a shit on my life? You work on that, and I'll work on my anger issues.
Visit downtownds.com. Watch my animation. Tell your friends about my site.
7 months ago