Skip to main content

a lil' shot of keep on trucking

Sometimes the strength runs dry. Ya know.




A bit of a courage draught happening here. I've been feeling pretty cowardly lately. Every time I think in either direction about Monday. D (as in decision) Day.




I get weak in the knees. A little naseous. And crazy thoughts swirl.




So I've been putting a lot of effort into NOT dwelling. And filling up with happy...positive...input.




Like this fabulously inspirational post I drew strength from yesterday!




I think EVERY parent navigating through crazy challenging complicated medical issues...should hop over to TherExtras and get a courage shot too! Lots of great info to sift through besides...




*******


And on a side note. Barbara of TheExtras and I had a dinner date planned once. It was to be at Cracker Barrel...one a my faves.


It's been a very long time since I've stood anyone up. But our girl's night happened to be the caboose to a very bad (yester)day.


I didn't want to miss our meet. And got dressed. Make upped. And was driving down the road when my heart just suddenly stopped beating. I had to go home. I couldn't leave Trevy like that. I just couldn't. So I called Barbara and apologized. She graciously understood.


A weepy seizure-y Trevy met me at the door.


I SO wish we could have met that night. Trevy needed me though.


Another time...

Comments

Anonymous said…
There WILL be another time, Trevor's Mommy.

Yes, "EVERY parent navigating through crazy challenging complicated medical issues" is a pioneer. In hindsight, I meant to imply that while showing some bloggers to each other - bloggers from different circles (diagnoses).

If my post helped you, I.am.happy.
Praying for Trevy and you. Barbara
Ellen Seidman said…
Hi! I came over after reading your comment on Barbara's wonderful post. It is nice to meet you and your beautiful kids.

Like you, I try hard not to dwell; mostly, I manage to pull it off, though it's hard not to sometimes. I'm mom to Max, who's 6, he had a stroke at birth that resulted in cerebral palsy. He's also had seizures.

I hope you get to go out this weekend! We DESERVE to get out!
Colby said…
I missed going out to dinner with my oldest son and his friends for his b'day this week because Colby fell and knocked his head real hard w/a seizure...I know how you feel....Just could NOT leave him...Seems like all I do is stand people up...OR not plan anyting in the first place!

We are hoping and praying that there will be no more of that for you guys in the very near future!!!

Try and fill the next two days with anything that suits your fancy...Monday will be here before you know it!

Thinking of you!

Cyndi
Anonymous said…
The slacker caught up on all your blogs.
MJStump said…
Danielle,

I hope you are finding things to keep your truck a moving or coasting at best, so you aren't thinking too much or running out of fuel.

I think the shot of courage you got from Barbara is just what you needed...what we could all use from time to time.

Praying that the time flies by and the clock doesn't stop too much for ya. Sending you a big hug and smiles from me and Kylie.

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...

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...

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...