Every year starting in November I join the ranks of all the other wistful writers who hope that signing up for National Novel Writing Month, aka Nanowrimo, will turn them into a novelist.
This year I've barely had time to write Facebook status updates much less anything resembling a novel. And I know that signing up to write 50,000 words in a month isn't going to change that. So I've decided that instead of writing a novel, I'm going to let out all of the things that I've held back on writing all of these years because I've been afraid to hurt someone's feelings, or to reveal the shitty person I really am.
You know what? I just turned 40. My life clock is ticking in a serious way and I don't have time to hold back just because you can't take it. So here goes, day 1, here's some shit I'm afraid to say:
The fact that my son has Down syndrome sucks. I put a brave face on it because I don't want to reinforce all of the negative stereotypes that are causing people to abort Down syndrome out of existence, but the truth is, I hate that my son has to work so much harder than everybody else just to reach the basic milestones that other people take for granted.
I hate to admit it but I am a competitive mom. How well my kids are doing feels like a reflection on me. I've put aside my career for years to help these little fuckers be the best they can be, and for what?
With Down syndrome it doesn't matter how much of a rockstar mom I might be, it's going to take my kid longer to accomplish things, and he probably will never be able to accomplish some of the most basic skills in life, like driving a car or having a family of his own someday. That's a hard pill for a competitive mom to swallow.
Last month was National Down Syndrome Awareness Month, and I started off the month strong, posting positive little tidbits about my kid so people could see that his life is worth living.
But then someone asked me about cognition. And I wanted to respond to her question. Because most people won't say it, but what they really want to know when they find out my son has an extra chromosome is "how stupid is having Down syndrome going to make him".
And I know that I shouldn't say the word stupid. I know that no matter what word we use to describe it, that stupid is the word that we're really afraid of. That's why we don't use the word retarded or mentally handicapped anymore. And eventually we won't use the term cognitively impaired anymore because people will begin using that in a negative way too. Because no matter what we call it what we are actually talking about is intelligence, and intelligence is impacted by Down syndrome.
In answer to the cognition question, I don't know what this will mean for my son. All I know that he will not be as intelligent as he would have been if he didn't have it. And that sucks.
Which isn't to say that I don't worry about my other kid too, I just worry about him in a different way. I worry that he'll be a drug addict or an alcoholic or teen parent. I don't worry about that with Benny. So, in that way Down syndrome is great. But when I see other kids his age talking in full sentences or able to understand complex concepts like "Can you put this in the trash?" my heart breaks a little bit.
At two, the differences aren't that obvious yet, so I know that my heart breaking now is nothing compared to how hard it will be as my son gets older. The differences will become more and more obvious. Right now he makes friends fairly easily, and none of them seem to mind that he only has a few words, or that his coloring skills are incredibly limited.
There is a reason that anytime a person with Down syndrome accomplishes something that typical people do all of the time everyone makes such a big deal out of it. We are all terrified that our kids will never be able to do that.
I have mixed feelings about it. Every time someone shares that a person with Down syndrome got a job or got married or went to the prom I feel torn. On the one hand it does give me hope that my son will be able to have these things too. On the other hand it makes me sad that these things are really not that extraordinary for typical people, and it seems that it's the most that I can hope for because my son has Down syndrome.
But I'm still that competitive mom. I want my son to do extraordinary things. If he wants to be a surgeon or a novelist or fly to the moon, I want him to be able to do it. If he wants to get married and have kids, I want him to be able to do it.
But the reality is that Down syndrome can be very limiting. In every single one of his cells my son has an extra 21st chromosome that fucks everything up for him. We do everything we can to offset it, he gets therapies and supplements and specialized medical care, but at the end of the day, it's still there, and it's still harder for him than it would be if he didn't have it.
Which is why I love my son but I hate Down syndrome. So there, I said it. The shit that I didn't want to say. Tomorrow I'll say more shit I'm afraid to say. This whole month of November is going to be a shitstorm, and I'm not just talking about the election, but you can better believe it's going to come up, because that is some serious shit right there.
Thank you for joining me. I apologize if I've offended your sensibilities with my cursing or my honesty, but I can tell you that it's only going to get worse. Feel free to ignore my posts altogether throughout the month of November, as I will be continuing on this cathartic journey of oversharing until the end of nanowrimo. If you are easily offended I will see you in December, when I will return to my regularly scheduled programming.
Since becoming a mom to a little boy with Trisomy 21 I have written a lot about Down syndrome and disabilities. I am a storyteller, wife and mom to a teen and a toddler. Life is busy!