Friday, May 18, 2012

"Til next time. Take care of yourself, and take care of each other."

Today was one of those days where you just have to believe the universe is aligning.  With the good, not so good, and everything, you're not quite sure about yet.

This morning, I received an email that we had lost one of our own.  A fellow advocate, who was in her mere 30's had passed away.  Katie Beckett changed lives for so many families.  I didn't get to know her well, but we had been at many of the same conferences, and I know her mother fairly well.  I won't pretend I knew her well, but hearing of her passing hit me hard.  She was an icon for the young people of my generation with special health needs.

Shortly after hearing that, I had a great, intense talk with the captain of Team Boston.  We talked work, and housing, and what I am not willing to sacrifice to make this possible.   And that is my dignity, and my inclusion.  I have come this far, and I will not go backwards.

I will accept the grad school lifestyle, and eat ramen, and not go out, or take trips, and live in a studio apartment with minimal space.   What I will not do, is be forced to live in SEGREGATED housing, because we need a building with no stairs, and a shower that is safe for us to use.  I am paying 60,000 a year to pursue my master's degree in a program I was accepted to, in an esteemed institution, so I will not be isolated, and segregated from my community of peers who are doing the same thing.  He accepted this, and we are making it happen, with a lot of work, communication, and determination.

After that, I came home, and was able to download videos taken by another incredible Bostonian.  And it's out there.  We have found an apartment that is ultimately accessible, and nice!  And actually within a reasonable budget.  Of course nothing about grad school or Boston is "reasonable."  but it is far more within our range than paying $2000 a month for something that is not accessible.  At all.

Now comes the tough part, where we really make it work, and the money meetings, and talking who gets my time when I'm in school....
And Owen is working with people in Boston who want to meet with him to "figure something out" in terms of work!  Hopefully they can work with him not quite being there yet!

But it IS happening, and I have to believe, that perhaps my "connections" are not just on this earth.

Thank you Katie, for all you have done, for us, for others, and for making us realize the importance of continuing this journey.

I leave you with something that I didn't write.  But that, it sounds like I could've.

Read it here

Amen sister.  You said it.

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