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Pondering…

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?

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Posted by on August 13, 2013 in Uncategorized

 

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“Silencing the Extra Chromosome 21″…

I’ve been putting off writing this blog post for quite some time now.  I’ve wanted to write it.  I’ve sat down in front of the computer, fingers poised over the keys countless times, but always end up staring blankly at the screen, words failing me once again.

“Silencing the Extra Chromosome 21”.

For those of you in the Down syndrome community, I’m sure this is old news.  It is, after all, the hot topic of conversation and controversy that has dominated the past few weeks.  For those of you who are not a part of the Down syndrome community, the gist is that there is new research coming out that shows lab results where the 3rd copy of the extra 21st chromosome, the one that causes Down syndrome, has been successfully “silenced” so to speak.  This could potentially lead to forms of gene therapy whereby they could address some of the medical issues that individuals with Down syndrome face.  Others wonder if this research could ever escalate to the level whereby it becomes possible to “turn off” all of the extra chromosome 21’s in someone’s body, thereby eradicating Down syndrome.

CBC Radio (the iconic Canadian radio station, for those of you not familiar with it!) runs a program called “The Current”.  This past week, “The Current” ran a segment called “Silencing the Extra Chromosome 21“.  Please, please, PLEASE, listen to the segment by clicking on the link above.  It is about a 20 minute show, but it is worth every minute to listen.

If you can’t listen to the whole thing, here is something that really stood out to me.  It is a quote from one of the guests of the segment.  His name is Will Brewer.  He is an individual with Down syndrome.  He is an actor and photographer, and lives in Halifax, Canada.  The interviewer asks him what he would like people to know about life with Down syndrome.  He answers like this:

“…we are who we are, and we love who we are.  We want a place in this earth, in this generation, in this life of every day.  And we are proud of who we are”.

I don’t know what to think about this research.  I waver back and forth.  I would love to be able to solve the medical problems associated with Down syndrome.  I would love to make Jake’s life easier.  I would love to improve the cognitive abilities of my child, because ultimately, I as a mother want the very best for my children.

I also wonder how much of the implications of this research could affect who Jake is.  If the core of his personality would change.  If he will, as he grows older, begin to feel as though this research is designed to “fix” him.  Because quite frankly, I don’t think that who Jake is needs fixing.

I cried as I listened to Will Brewer, because ultimately, my hope and prayer for Jake is that he will one day be able to stand proud, and say that he loves who he is, and that he is proud of who he is.

So, as far as my opinion goes, I suppose the jury’s out.  I see the potential benefits that research like this could have in Jake’s life and the lives of countless others.  But I also see the potential for harm.  I have more questions than answers.

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I would love to know what you think though.  If you have an opinion or thought on this topic, I would love to hear your comments, so please share:)

 
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Posted by on August 4, 2013 in Uncategorized

 

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