Skip to main content

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.

Comments

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…
Danielle...

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!!!

XOXOXO
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... :-)

Popular posts from this blog

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...

runaway

I tend to be a live out loud kinda girl. But sometimes... well...sometimes life is just so heavy. So intense. So overwhemling. That it brings out the recluse in me. Like lately. The thing is...I know it'll pass. It always does. And I'll learn something. Grow. Hopefully. Survive. Certainly. Because I have to. It's just right now. In this particular heavy moment. I would much rather run away to some tropical paradise and sip martinis until Jonathan calls to tell me Trevy's back at home. Happy. And seizure free. With a new head of curls covering the scar and bouncing around the house. I am a coward after all. I've never denied that. And I really don't want to live through this next month. Which is probably why my posts will be random. At best.

I sure hope...

they grow back curly! Saw the "unknown" flashing on the face of my cell phone and knew who it was. Who it had to be. Dr. Fellow. My eyes met Grams' and I nodded. Grams has a pool, see. For super hot days like today. We're also having a septic installed. Which meant no water or facilities at my place. But those weren't really the reasons I was there. Close to mom. The purple ringing thing in my hand was. Only I wasn't prepared for it to be ringing SO darn soon. Shortly after lunch instead of dinner! I swallowed. Took a deep breath. And clicked connect. Dr. Fellow has a very nice phone tone. Clear. Hint of compassion. If only a stitch of humor were added...it'd be heavenly. But there was no humor. Just business. He's very direct. I'm learning that about him. Which explains his short hello. Followed by immediately pushing into the news. Being that it was a unanimous consensus. The entire surgical committee feels Trevor is a good candidate. And then p...