Skip to main content

off-line

So I've been hem-hawing about blogging through this next week.




And while I'm sure I'll have TONS of guts to spill. I'm just not sure that I really want to. Or will have the energy to.




My trusty laptop shutting down several times daily again helped me decide.




I'm letting myself off the hook. And going off line.




Although I do have one post already scheduled for while we're away. And if you haven't explored the various links to the side of my blog...since your's truly will be on a blogging sabatical now might be a good oportunity! There are some extraordinary families out there! And some wonderful resources.



Anyway...




Thought I'd nip the worried emails in the bud!




::smile::




Jonathan & I will be clinging to eachother...and Trevy...and Jesus... And probably memorizing the words to this song....since I can't stop humming the tune!







Comments

Mama Skates said…
i'm glad u're taking a break...we'll miss u, but this place def shouldn't b of any concern 2 u this week...hope everything goes amazingly well! can't wait 2 hear all about ur trip!

prayers & xoxoxox,
sharon
Colby said…
Danielle...

Thanks so much for sharing this beautiful song...My mom is having some tests run tomorrow, and as I was watching and listening, I was put more at ease about those results....And naturally, I was also thinking of the struggles with my Colbeana! This is DEFINITELY something worth sharing....

Thinking of all of you!!!

And again, I appreciate this...and you....so much!!!


Cyndi

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...