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My Common Place Journal



Disclaimer: I am a woman of faith and as such many of the places and means I've found hope will be reflective of my heart. 

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Worthy Reads

Quotes 

"I've spent too long wanting what was taken from me and not what I was given..."
Caspian, Voyage of the Dawntreader

"Go as far as you can see; When you get there, you'll be able to see further"
Thomas Carlyle


Trevy in the News
  • Drug Money - by Russ Mitchell
  • The High Price of a Rare Disease - ABC news 
  • JEC testimony - I was asked to testify on Capitol Hill before the Joint Economic Committee regarding Questcor's price hike of Acthar and how it effected our family 
  • Fall River Herald - Trevy made a cover story of our local news as part of a new Special Olympics program in our area! 

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a different kind of muscle — guardianship process

  To all the parents who have walked through the guardianship process — my heart is with you. Our paperwork is prepped and ready to submit this week. He turns 18 on April 3rd. I've been thinking about this for a year now, but only just mustered the energy to move forward — the loom of his birthday my propellant. Overwhelm has paralyzing effect. I'm struggling to recall the last time I didn't feel overwhelmed. It struck me how all these years of walking through disability beside Trevor should have made me stronger and yet... I suppose it's a different kind of muscle being developed.
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No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...
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