and then I'm reminded why

I wonder if you've noticed my blog absence lately. 

Both in posting.  And in reading.  Or at least commenting.  I still read all my little IS buddies blogs.   Because my heart has this really sappy connection and can't rest if I don't check in.  And it's not that I haven't been posting.  It's just the emotion has been lacking.  On my side anyway.  

But my time is SO crunched.  My energy SO drained.  I just haven't been as into it as I once was.  

The thought even crossed my mind recently that I'm not sure why I continue to add my voice to the noise?  Or that I will.  That maybe it's something I could cut out to open more time and energy for other things.  Like working out for instance?  Lord knows my jeans are begging me to!  

But then last night I got an email from a local-ish mom.  Reaching out to me because she deeply believes her baby has been misdiagnosed.  Especially after watching video clips of Trevy's spasms.  

We spent a large chunk of the night emailing back and forth. 

The video clip I saw left me positively heart sick.  And convinced she was right.     

And now this morning...as they're in route to the ER with their sweet little baby who is clustering in the back seat of the car.  Heading to the ER in part because I urged her to do so.  A part I wouldn't be playing if I didn't keep this blog.     

And it reminded me why I do this.  Sure it's therapeutic for me too.  I definitely get a sense of community from those (both seizure families and non) who have connected with us.  You're my peeps.   

But really a large part of why I continue to do this...is for families like her's.


blogzilly said...

Glad you got some positive reinforcement like that. Wish the circumstances were different, but still, you know what I mean.

Lunamor said...

I just started reading your blog...hope that you'll continue to post. Our story's a bit different than yours (son had his first simple partial seizure at age 4; he's now almost 8) but we are now awaiting PET scan and hopefully the brain surgery, as he was deemed intractable this past summer.

Thanks so much for posting about your journey - looks like there is quite a community!

Debbie said...


you have a huge heart, and clearly your words can breathe healing and hope into those who read...
(especially with what a marvel Trevy is after his long battle!)

I think God may have given you that little nudge to keep it going, as you touched/helped another family last night when he placed them in your path!

(I know if for any other reason, I expose our struggles to let others know they are not alone, especially if they are new to all of this!)

Colby said...

I agree totally with Debbie above...

You have been at this for 1/5 the amount of time I have, and you CONTINUE to inspire me!!!


Kristen said...

Thank you Danielle!! Your help has been amazing and has made me feel me better about following my gut instincts. I don't feel alone and that is a precious gift you have given to me. Please DO NOT stop blogging. Sharing Trevy's journey will and does give people help and most importantly hope. I am pretty sure you touch many people who will never meet/e-mail, iphone etc. -Kristen :)
(the local-ish Mom)

Ian Marrey said...

Don't leave. My wife doesn't mind me stalking you... :-)