Sarah Defies Gravity

what one little chromosome taught me about love, life, and defying gravity.

Archive for the category “writing”

Down Syndrome Awareness and the future of Sarah Defies Gravity

So, 31 for 21 is almost over and I admit that I didn’t put forth one single post for it. Why? Well…the biggest reason is that we’ve been busy and that there are other things on my mind, so I just didn’t have the inclination. The second is slightly more selfish. And lazy.

I started this blog just over a year ago with one goal in mind, and that was to educate and inform people who might otherwise not be educated or informed about Down Syndrome about the reality of Down Syndrome parenting through a series of daily life posts as well as “essays” or more fact-based entries about Down Syndrome such as my “Just the facts, ma’am” and “spreading the word to end The Word” posts. I don’t purport to be an expert on the topic, but I know that if you’re not “in” the community it can be really hard to find factual information because you’re typically not talking to people in the community every day, and I saw an opportunity to educate people and took it.

Though there has been some evolution of this blog over the past year, especially due to some unforeseen and difficult health challenges, I feel as though the overall theme has been maintained. This is an informative blog about Down Syndrome first and foremost.

So the idea of 31 for 21 seems a little redundant to me strictly because the entire purpose of my blog has been to educate and inform, rather than to just report on our daily lives, so there isn’t a lot left to say after a year. I do want to keep raising awareness for Down Syndrome, but something like 31 for 21 is just too difficult for me to keep up with or to squeeze out 31 posts because a lot of it would just be repetitive.

I want people to be aware of Down Syndrome and I want people to be informed about Down Syndrome. If I could have any one wish, I think it would be that people were 100% understanding and informed about Down Syndrome, and that prejudice and misinformation about Down Syndrome would disappear, because I truly believe that it’s a bigger hindrance to our children’s success and development than that extra chromosome is. If we give up on our kids just because they have an extra set of genetic material, what does that say about us as people? What does that say about us as a society? Children with Down Syndrome have infinite potential…it’s up to us to unlock it.

If you are reading this post and you would like to learn more about Down Syndrome and “bust some myths”, here are some helpful links to get you started:

National Down Syndrome Society: the national advocate for all people with Down Syndrome in the United States and probably the best source of information there is. See their articles on “Myths and Truths” and “Down Syndrome Facts” especially.

Dr Brian Skotko is the leading expert on Down Syndrome research in the US. For those looking for more scientific-based information, this is a good place to start.

downsyndrome.com, downsyn, and the Babycenter Down Syndrome board are great communication boards to connect to parents with children with Down Syndrome, and sometimes, the parents are the greatest wealth of information there is because after all, we’re living it every day.

On this blog:

World Down Syndrome Day: Just The Facts, Ma’am a semi-comprehensive factual post about Down Syndrome

A Valuable Life a frank discussion of abortion for Down Syndrome and the value of life from the perspective of a pro-choice individual

Spreading the Word to End The Word a discussion of why it’s wrong to use the R Word

What Down Syndrome Can Do For You about how Down Syndrome changed my life for the better

Perfection and Perspective on what “perfect” means.

 

Now, for the second part of this entry, and going back to what I said about being busy and having other things on my mind:

I’m not sure where I see this blog going, honestly, or if I see myself keeping up with it on a regular basis or at all anymore. On one hand, I enjoy writing and I enjoy blogging and I enjoy connecting with people while talking about something I care about, but on the other hand, I’m out experiencing life rather than writing about it and I’m enjoying that, too. There is also the matter that in January I’m beginning school to hopefully complete a degree in genetics and eventually become a geneticist and a researcher of Down Syndrome, so I don’t know how much I’m going to want to be writing about Down Syndrome in my spare time.

For now I think I feel safe saying that this is the “end” of Sarah Defies Gravity, as in there will be no more posts on this blog, or if there are, they will be few and far between. However, I plan on leaving the blog up and completely intact to serve as a resource for people who wish to learn more about Down Syndrome, because there just aren’t enough of those and I would feel like I was doing the community a disservice by removing one, even my mediocre one!

Grooowin’ up

I’m making a concerted effort to blog lately for two reasons–the first is that it’s easier to do so when I have unlimited access to a computer and that I really enjoy doing it as a way to de-stress and do something I love (write). The second is has to do with writing as well, but in a slightly less noble way.

When I was a kid I wanted to be a writer the way other kids want to be firemen or doctors or Batman. I was that kid getting trouble in the back of the classroom for writing stories when he should have been doing his math worksheets. It wasn’t just in elementary school, either–all through my life, it’s all I ever really wanted to do.

I think that when people I knew back then talk to me now they think I stopped writing because I didn’t like to anymore, but that’s not exactly the truth. I didn’t stop writing because I didn’t like to anymore, I didn’t stop writing at all. I stopped acting like I could make it professionally as a writer because I grew up and got cynical.

“You need a real job,” they said, and I worked in a real job, for two and a half years, until Sarah came along and then it wasn’t an option anymore (and besides that, it was kind of soul-crushingly miserable). “Just give up,” they said. “You’ll never make it.”

Of course I don’t think anybody who ever said that was trying to crush my soul, of course, but merely be practical. But sometimes…fuck practicality.

The point of this is that I’m writing again, and this is good “mental floss” if you will, a good way to practice and rehearse. Do I think it’s going to go anywhere? Well…no. I don’t flatter myself in thinking that I’m that good. But sometimes you have to chase your dreams, sometimes you have to do things that you want to do, and this is what I want to do.

(Jeez, Christopher, when did this blog become all about you? Narcissistic douchebag.)

Post Navigation