Skip to main content

hope


Labels:

Comments

Monica~ James~ Connor said…
Very Beautiful! Trevor is such a cutie! Congrats on the Senate call. Luckily we did Connor's ACTH before the price gouging occured (1/07-4/07). I thought it was a battle then when our insurance didn't cover a $1500 vial. My husband and I have talked about it often...what would we have done? Here you are given this devastating news about your child and then oh by the way...to treat him you'll basically have to go bankrupt...your decison. I can't imagine, it makes me so sick. To top it all off, ACTH doesn't work for everybody (it didn't for Connor!) so then how do you get over the fact that you've just blown $100,000. You'll be in our prayers that you come up with the most outstanding words ever! I Good Luck. Monica
July 14, 2008 at 8:49 PM
Danielle said…
Monica - I love this poem...especially since the author was my college room-mate! :o) Gaining ACTH coverage was a nightmare...no parent should have to hold their little baby and learn that he has IS & oh by the way the drug that could help him isn't covered by the insurance you've been paying $800 a month to have for the past 6 years! Jonathan & I were sick...literally...sick. I would randomly just break down & sob...and I'm not a *cry-er* really. I just hope somehow someway something changes...and no other mommy/daddy has to go through the same hell we did...
July 15, 2008 at 3:55 AM
Post a Comment

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...
23 comments
Read more

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...
27 comments
Read more

it ain't sexy livin' on an island...

Especially when you have to cross bridges to get ANYWHERE. Very LARGE bridges. The crests of which I inevitably get stuck at. Speaking of...why is it that at the tippity tops of our bridges...the railings always open up? To reveal an eagle's eye view of the white capped depths below? I HATE that. And sure enough...in route to Dr. Pedi yesterday...they must have seen me coming cause traffic ground to a halt at the top of the Mt. Hope Bridge. Where I felt less than Hope-ish. My palms gushing my nerves onto the steering wheel for a good 15 (felt like forever) minutes. Not just things medical bring out my cowardly lion. Heights do too! Anyway... Grabbed an iced coffee and chocolate cream filled to settle my nerves on the way. And we arrived on time...in one piece. Of course. Dr. Sick-Visit-Pedi breezed in chart in hand. Glanced down. Then at Trevy. Then said... "He has a history of Infantile Spasms?" Surprise and speculation in her voice. We get that a lot. It...
13 comments
Read more