Life Lived With Moxie

Thoughts are crowded around in my head, streams and pieces related to last week, yesterday. Yesterday. Boston. Just when you think people couldn’t get shittier, someone sets up a bomb at the finish line of a marathon – run 26 miles and then get blown up?

My God.

And they say that there were kids there.

It just doesn’t stop, it seems sometimes.



On the tail of that, I want to say that I wish that they reported the extraordinary acts of love, courage and valor alongside the ones that are horrific. I wish that there was a segment on the news that talked about the good stuff. Like the fact that a lot of people by and for the Down syndrome community have come together to rally for an independent investigation. #justiceforethan: we got it trending on twitter and we are still working hard (or rather, tweeting hard) to move this along.

(For more: please just look above in the nav bar – there are links on the case, twitter 101, twitter handles and a tweet sheet)


Did you read this post, Uncomfortable Truths? It’s the best one out there right now. Definitely the best one that captures what this is all about. I also liked Who Will Speak for Ethan Saylor?



I’m coming to terms with all the bullshit and divisiveness that come from trying to take action in something like this. Dumb squabbles within groups, flabbergasting organizational errors (– yesterday the NDSC advised us to “buy a card” for the Saylor family – they deleted their comment, but not before a friend took a screen shot. Now the NDSC says their account was hacked. Where’s the emoticon for ‘eyeroll’?).


I think it makes me simultaneously more in awe of what we are doing: we are organizing something completely over the internet, more frustrated with it all: we are organizing something completely over the internet, and back again.

It’s hard to do this.

And it’s important to do this.


Because that saying is true: our lives begin to end the day we don’t do anything about the things that matter. When we throw up our hands and say, ‘well, it’s a crappy world, shit happens, there you go” and don’t take action, don’t move forward even when it seems hopeless, well. I think a part of our spirit dies too.

I need to live my life with moxie.

My spirit was in stagnation for long enough.


I need to try and wear my heart on my sleeve, speak my truth (even when it doesn’t make me popular). I need to care  even though I’ve been hurt, even though people can be assholes.


It’s a short life we have here and what do we want our kids to remember us for in the end? The times we stood up for something that wasn’t fun but what we knew in our heart to be right and true? The times we lived with a little moxie?

Or lived not at all.


IMG_7237In the Baha’i writings they say, “with gold we test our servants and with fire we test the gold!”. My parents liked that a lot and I grew up with “- with fire we test the gold!”.

In essence, it means that people are spiritually “tested” by stuff, material goods; but with people that are truly committed to the spiritual, they are “tested” by events, difficulty.

I think that some people use this as an excuse  to feel better about their situation. Like, ‘we are really poor right now and that’s because GOD LOVES US!’ or ‘we don’t know how we are going to come up with rent this month but we pray all the time and we care deeply about our religion so WE ARE BEING TESTED ON OUR FAITH!’

IMG_7241I don’t think so.

I think that’s just the result of  poor financial management, some bad choices.

I think that it’s events that bring you up to your moxie – that force you to make a decision one way or another about something that you know is important to yourself – things that make you choose courage and verve, assertiveness and action.

I think it’s those events that truly test the gold.


How we interpret the events in Boston. How we make sense of it, process it and move forward.

How we act on an injustice like the plethora of questions that remain with the homicide of Ethan Saylor.

Two examples, in a world full of choices and opportunities to find our moxie and live with it.


And in my own lucky case, not just with it; with her.





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is a deaf blogger, global nomad, tech-junkie, cat-lover, Trekkie, Celto-Teutonic-peasant-handed mom of 3 (one with Down syndrome and one gifted 2E).
She likes her coffee black and hot.
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  • Such a beautiful post. You have such a way of making beautiful sense out of the mess of emotions that are running right now and leaving your readers with a sense of hope. Thank you again.

    And I am still locked out of Twitter. So bizarre. Hoping they re-activate me soon so I can keep tweeting.

  • NDSS also removed Dr Skotko from their board without any transparency or explanation after he took a position to support full information and CoLLaBoRaTion among many sources to provide information to parents newly diagnosed.

    The approach by NDSS to not provide this work they supported and replace it with material that currently omits any mention of a stark reality: that people choose (are heavily encouraged) abortion? In my opinion is equivalent to providing the strongest endorsement for MaterniT21

    I have not problems with full information but don’t think the ill informed / low information seeking pressured scared parents are not going to see this material as a SAVE or spare yourself gift. And I include doctors in that poorly informed group, mine was!

    Two doctors I used would say phew now see even NDsS supports this testing and we all know why…implicit endorsement of your choice when the Ndss markets for materniT21 fully aware that termination ratios are soooo high at 92% (okay 75-92 ive seen but still!!! Well beyond 50-50).

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