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::
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::
Comments
(((((hugs)))))
...danielle
That is what they need to see.
xoxoxox,
sharon
Sharon - Thanks SO much sweetie! (((hugs)))
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:)
Thanks...
I'll post when I can!
...danielle
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!
(((hugs))))
Love you too daaaaaaaahling! *wink*
...danielle
It kinda eases the sadness of having to leave TZ behind! God is incredible like that!
...danielle
you might just be about to change the world, remember that your words inspire people and you'll be brilliant. (no pressure!)
seriously - wow!
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.
You can seriously make a differencee here so GOOD LUCK!! Sending big hugs from the UK, YOU GO GIRL!! xx
paddy's mum...YIKES...and thanks for the encouragment! And big hugs back!
...danielle