7.14.2008

it's like being asked to the prom...

only MUCH MUCH bigger!


I had noticed (yes...I stalk my site meter!) that a government ISP had logged onto Trevor's blog. Whoever it was had spent a good deal of time hanging out too. Followed a few minutes later by a government ISP...hailing from Washington. As in DC!


My eyebrow raised. It was just kinda odd. Note-able odd. You know?


Anyway...later that day (last week) I was folding laundry & thinking my crazy insane thoughts. Along these lines...


I hope I'm not saying anything I shouldn't!

Maybe I made somebody mad?

Wait a minute! I live in America! I'm allowed to say anything I want!

Aren't I????


A shout from the other room interrupted my thoughts before I had a chance to further mull. It was Jonathan. I had just received an email.

**Side note...he's always doing that! Reading my emails! Sheesh!***

The said email was from a US Senator's aide! Asking if he could speak with me. Little ole' hardly has time to splash some make-up on anymore and that's why I like to blog because I don't have to wear make-up and some people still think I'm cute...me!


Now there are some moments in life that take you by utter suprise. That you are just completely unprepared to experience...


The way your heart skips a beat the first time you kiss your soul-mate...


The way your heart melts the first time you snuggle your newborn baby close...


OR


getting phone calls out of the blue from United States Senator's aides...


Who have evidently stumbled onto your son's blog and found your ACTH story compelling.


So compelling that you're formally invited to testify before the Joint Economic Committee!



NEXT WEEK!



Now here I am...all butterflies tumbling. Totally wishing I had been more consistent with my exercise plan! And in desperate need of a power suit!


Seriously though. This is an amazing opportunity! I've shared before the darkness of those first weeks. Dealing with the diagnosis. Emotionally exhausted but having to dig deep & find the courage to battle it out with our insurance. Our valley of the shadow of death. I shared with Dr. Neuro just yesterday we didn't know what would happen! Would the hosptial kick us out because we couldn't afford Trevor's Hope Juice? Would we leave hospital bills instead of a house as our children's inheritance? All because Questcor continues to abuse the system...without a care of who pays the price. The innocent! And our family has been granted an opportunity to share our story with the people in power! To be Trevor's voice. And the voice of those who will walk this gruesome valley in the future. Once upon a time I said that perhaps...united...we could make a change... Honestly...it was just words. Thoughts. Ideas. It's easy to be bold in blog-land. It never crossed my mind that it could possibly come to this! But one thing I've been learning a lot about this past year in particular...


His thoughts are WAY bigger than mine!


Wish me luck!


and forgive my absence...it's a super busy week. What with re-vamping my workouts...and power suit shopping!

::smile::

16 comments:

Sophie's Story by Elaine said...

Oh my, I have butterflies in my stomach just reading your post. What an incredible opportunity you have, but to testify before the Joint Economic Committee with only one week to prepare... If anybody could do it, it would be you. You have a way with words. You have a special talent. You will find the right things to say and you will be the voice for so many of us IS parents. You will represent us well. I believe in you.

baby trevor's mommy said...

I'm going to look up one of my old college professors...he was always after me to pursue a career in writing/speaking. Of course...I went with the missionary thing! lol But he'll say exactly what you just did! :O)

(((((hugs)))))

...danielle

JSmith5780 said...

Don't stress over the power suit... the bigwigs need not see you as a super speaker in a power suit but as a Mom doing everything in her power to right her world and her son's life and along the way try to help other families from enduring what you have endured.

That is what they need to see.

~Mama Skates~ said...

i literally gasped when i read that - u sooooo deserve it too girl! ur words/blogs are so inspiring & hopeful....YOU are so inspiring! good luck my love - i will keep u in my prayers all week as you prepare & shop! ~teehee~ i KNOW u'll b GREAT & i cannot wait to hear all about it!!!

xoxoxox,
sharon

JSmith5780 said...

Just a reminder... I will be off in the woods for my kid free days while you are before the Senate... PLEASE PLEASE PLEASE leave me a voicemail on my cell to tell me how it went! I will be standing on the dock (the only place with cell coverage) anxiously awaiting a call!

baby trevor's mommy said...

Jen - I KNOW that our paths crossed for a reason! You are one of my stablizers! Just so ya know...:O) I will call you! Cross my heart!

Sharon - Thanks SO much sweetie! (((hugs)))

Molli Salzman said...

Danielle,
What an honor, that YOU deserve. Your posts are so inspiring. As you know, Charlie had ACTH injections as well. I have read SOOO many bad stories about insurance companies not paying or hasseling families over this medication. Actually, I called our prescription coverage to THANK them, because we were not hassled at all. I told her we are one of the few who are handled this nicely, and I was choked up telling Charlie's story to a complete stranger, I can only imagine what she was thinking LOL.
Aside from that, it makes me sick to think about how many families are denied coverage or hassled. It is precious time. Congrats to you! I cannot wait to hear to how it goes:)

baby trevor's mommy said...

Molli - I'm SO glad that you didn't have to duke it out. Trust me...it's emotionally exhausting. I find myself spilling my guts to strangers too...lol...I'm sure it weirds them out! But it's part of who we are...ya know!

Thanks...

I'll post when I can!

...danielle

Shanna Grimes said...

That is so totally awesome! We could not ask for a more compelling spokesmodel to represent our little community of ACTH consumers.

Sorry it took me so long to post about this. It has been a crazy week. I have been reading everything, just trying to catch up on commenting.

Good luck with the shopping and don't worry, you look fabulous just the way you are, daaaahling!

baby trevor's mommy said...

lol Shan! You always make me laugh...and I totally need that kinda friend on my list!

(((hugs))))

Love you too daaaaaaaahling! *wink*

...danielle

alece said...

that is so incredible!

baby trevor's mommy said...

Alece...

It kinda eases the sadness of having to leave TZ behind! God is incredible like that!

...danielle

Ian Marrey said...

.....hi you

you might just be about to change the world, remember that your words inspire people and you'll be brilliant. (no pressure!)

seriously - wow!

LISA EMRICH said...

Hi. Thanks for emailing me. I, too, like to check my sitemeter and am tickled when I see who comes around. There had been increased traffic from various government offices, including the U.S. Senate Sergeant at Arms again yesterday, regarding Questcor/Acthar.

When I see these visits and see what searches brought them there, I hope that something is being done. Looks like you have a wonderful opportunity to give a voice to the many parents affected by IS.

Let me think if there's a different way to present the information, or a way to condense the biggest points into a single post. I also live in DC; I wonder if there's a way to observe the hearing. This is exciting stuff. Remember to breathe and get lots of rest this week.

paddy's mum said...

If anyone can find the words and the way to put it across you can. You have the ability to keep all us Mum's laughing even on a dark day, you'll be fine.
You can seriously make a differencee here so GOOD LUCK!! Sending big hugs from the UK, YOU GO GIRL!! xx

baby trevor's mommy said...

Lisa...I'm excited to see what you come up with! Thanks for taking the time not just to read my email...but to scoot over here & spend some time!

paddy's mum...YIKES...and thanks for the encouragment! And big hugs back!

...danielle