I received a couple of e-mails soon after I blogged my previous post, asking me if I was OK.
Yes, I am fine. Am I angry? Nope. Just tired, I suppose. I just want people to stop telling me that Edry doesn’t look like he has Down syndrome, or that he is special, or that he “brings good luck” (“bawa tuah” as you would say it in Malay), or that I am strong, or things like that which I’m lately prone to categorize as prejudiced crap.
Down syndrome has nothing to do with looks. That’s not what us parents are concerned with. It’s the health risks associated with having Down syndrome is what worries us.
Why does having Down syndrome make him special? What about his other brothers? Each and every one of my sons is special.
What’s with this “bawa tuah” anyway? If you’re saying that Edry is fortunate to be healthy, then yeah. Otherwise, isn’t this undermining his older brothers? Are Eric, Joel and Ezra going to bring me trouble? In any case, I don’t believe in luck.
Me, strong? Forget it. That’s undermining other parents, too, you know.
I’m laughing inside now. You might think that anything you say to me would insult me 🙂
You know what things I don’t mind talking about? You can ask me what Down syndrome is, if you don’t know. You can ask me how it felt when I first found out about Edry’s diagnosis. You can ask about Edry’s health. You can ask me how I’m coping. You can ask how you can help get involved with assisting people with special needs. You can ask me about how I’m addressing Edry’s needs and where to get help.
Life is different, yet it remains the same. I’m not in denial of his abilities, but the fact is, he’s just like my other kids I have to take care of. Really. It’s not easy, but it’s not hard, either. It’s as challenging as raising Eric, Joel, and Ezra, you know?
It’s the uncertainty that scares me, not living it.
So if you’re not sure what to say to me, just smile. Or ask me how Edry’s doing (to which my standard response would be, “He’s healthy, thank you,” with a dash of smile… unless he is sick, of course). Or ask me about the weather for all I care. If you’re really curious, tell me that you are, and I’ll do the rest of the talking 🙂