13 Aug

Recently I have been pondering.

“Am I a good enough advocate for Jake?”
“What does being a good advocate even look like?”
“How do I advocate for Jake without becoming an obsessive, aggressive, annoying human being?”

And, I think most in keeping with the theme of “pondering”, I wonder “What am I advocating for?”.  Am I looking for equality?  For respect?  For inclusion?  For people to see Jake as I see him?  Unequivocally, the answer to all those questions is YES.

But I have been reading a lot of articles, opinions, and blogs lately that have been focusing on research.  That state that being an advocate involves supporting and pushing for more Down syndrome research to be done.  That call people to action, not just in the lives of their individual loved ones, but in the context of the broader Ds community.

And this, friends, is where I get hung up.

If I were being completely 100% honest and transparent (warning: some of you may be utterly horrified by what I am about to say) I would say that up to this point, I have not cared at all about advocating for Ds research.  I have not felt the urgency for research, because in my mind, Jake is an absolutely lovely and wonderful little boy, and why would I want to push for research that intends to “cure” my son?  I firmly believe that Down syndrome is not something that one needs to be cured of.  I firmly believe that Jake has inherent worth because of his value as an individual, and that his worth is not determined by the number of chromosomes he possesses.

It is possible, however, that I have begun to see the light.  There is a stirring in my soul that is beginning to awaken.  It started with the news release a few weeks ago about the recent research that is taking place and the possibilities it possesses for individuals with Down syndrome (if you want to read more about it, click here to read my last post).  It further developed as I read about this website, One21 and as I began to envision research that is not looking for a “cure” for Down syndrome, but rather looking for ways to better manages the challenges and struggles that Down syndrome brings.

As I look toward the future for Jake, I continue pondering.  If research can help mitigate some of the potential problems for individuals with Down syndrome, then I do believe it’s about time I got on board.  I want to be an advocate for my son in the here-and-now, in the every day.  But I also want to advocate for things that will provide him with a way to better manage the challenges that he is sure to face in the future.

Thoughts?  Ponderings?


1 Comment

Posted by on August 13, 2013 in Uncategorized


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One response to “Pondering…

  1. Jenny

    August 14, 2013 at 9:00 am

    Ya, I can relate to this. I have never jumped on the research band wagon, I don’t want or need a cure for my son either. But, I am all for finding new ways to help improve his life. As far as advocacy goes, I find I have tuned down a bit. I decided long ago I didn’t want to spend Russell’s entire life being angry and fighting for things, or correcting wording people use, or any of that stuff. I simply want my son to live his life. And by people seeing Russell and our family they can learn about Ds from that. I am done preaching to people about it.

    Great post!


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