Sarah Defies Gravity

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

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!

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4 thoughts on “Down Syndrome Awareness and the future of Sarah Defies Gravity

  1. Essie (aka Niblet_511) on said:

    I certainly can relate to a blog being left by the wayside in order to be out living Real Life, but I do hope you’ll still post some updates to how you and Sarah are doing from time-to-time. As a long-time member of BBC’s DT, I’ve grown a bit attached to hearing about your Lovely Lady–and about you, too, Christopher ;)–and this site has mostly been my source. Being attached to someone you’ve never met can be considered odd by some, but it is what it is on my end. I do care, so there! *LOL*

    But you do whatever is right for you and your daughter. Best of luck come January, and in the months and years you have ahead of you with your schooling. From all that I’ve read here and on DT, I have a tremendous amount of respect for you as a father, and as a man. Lots of love to Miss Sarah!

  2. Ah. First and foremost, you have to do what you have to do to be there for yours and your family. So congratulations on have your responsibilities in order. Also, best of luck on your schooling. I wish you the best!

    I found your blog very recently , and have been waiting for two weeks or so for an update from you. So when i saw this post in my reader I was excited and happy. Then i read it, that you will not be posting any more and my heart broke a little.

    But, i understand!

    Just know, i learned a little bit about Down Syndrome from your blog. So know all your writing wasn’t in vain ( and you write really well and I personally thing even if it’s privately in a journal you shouldn’t stop writing, it must be therapeutic for you in the very least) . I wasn’t aware October was Down Syndrome Awareness month. So when i found that out, i did research on Google and have been spreading the word. ( actually kind of mad at October it’s Breast Cancer Awareness month, Down Syndrome Awareness month, Domestic Awareness Month, Stoptober( stop smoking awareness), and it was Spirit Day a few days ago( day to spread awareness and stop bullying of Lgbt youth) … so its a month full of GREAT causes but it’s same month for all this and the only one that is publicized is Breast Cancer Awareness)

    Thank you for informing us, but it was your personal that story that really made me empathize , feel something and understand just a tiny little bit . Anyone can read facts and statistics. But, meeting someone sharing their story ( even cyber-ly ) really puts things into perspective. I have a special needs niece, cerebral palsy… so i always have that sensitive spot for little ones with disorders. I hope your Sarah is doing well.

    Any who, you’ll probably wont be reading this. But, I will be sending you and your family my positive thoughts and best wishes , may they go with your throughout your “real world” experiences.
    -Tasha

  3. Good luck with school! I will miss your writing and perspective…

  4. Shelley CG on said:

    I wish you luck!
    I, too, will miss your posts. I’ve followed since you started thanks to BBC.
    I wish nothing but wonder and love for you and little miss.

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