Skip to main content

who will you be rockin' Purple for? (link in)

I've wanted to do something festive on Purple Day forever. Or for 3 1/2 years anyway.  Cause sometimes 3 1/2 years can feel like forever.  


::smile::


This year I was going to get a purple streak in my hair.  Turns out finding time for a salon run wasn't gonna happen.  I also meant to use purple text with all my posts for the month of March.  Seeing as how I'm hit n' miss with even remembering to add my Signature...that wasn't ever really gonna happen either. 


But this morning I was inspired with a new idea. Maybe even better! 



What if I posted pictures of Trevy's seizure fighting friends instead?


If you'd like to join me here's what to do:


  • Email the picture of your choice to me (click here to be taken directly to my email) at tanzie213(at)yahoo(dot)com today.  I know it's last minute but the idea literally just hit my brain!  Which means other than me...you're the first to know!
  • In the subject line write: I'm wearing purple for (your child's name)
    • If you'd like to spice it up first (see Trevy's below) Picnik is a free online photo enhancing program.  I use it all the time!

    • Include the link to your blog or update site if you'd like for others to have a chance to read your unique seizure fighting story and I'll make sure to link you in.  
    • Lastly, I'm not trying to be a meanie here.  Promise.  But I would like to keep this for children with a history of Infantile Spasms only.  I'm in loooooove with some of your children who are not IS babies!  But my goal is to promote awareness for Infantile Spasms this time around!  But wipe those tears away...cause you're totally free to steal my idea and use it on your blog! 

      I'm excited about this!  I hope it works...  If it does...maybe it'll become my yearly Purple Day thing?

      Popular posts from this blog

      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.

      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...

      the great answer hunt in the land of Infantile Spasms

      If I've said it once... I've thought it a million times more. How it's like the more I research...and discover...about IS. The more blurry everything becomes. For every answer found. A dozen questions are unearthed. Remember our whole ARX saga ? Yeah...that threw me for a loop. So much so...that I never went on to post the end of the story. Thus far... See...the unbelievable in the world of genes happened. Because this is IS-ville after all. After Dr. Genes sampled Trevy's ARX gene on a whim...a whim which revealed an unkown (meaning the first time this specific change was found) mild mutation...she proceeded to send Toby's blood off to mad scientist central. With assurances that this was totally unnecessary . She was convinced that Trevor's ARX mutation was the underlying cause of his Infantile Spasms. And that Typical Toby...would prove to be just that. Typical...at least in all areas mutate-able. And yet...Toby's ARX blood sample revealed THE SAME MIL...