Welcome to Hope Rising!

'When you have come to the edge Of all light that you know, And are about to drop off into the darkness Of the unknown, Faith is knowing One of two things will happen: There will be something solid to stand on or You will be taught to fly'
Author Unknown.

Through this journey, no matter what we've faced....our Faith has taught us how to 'stand' and 'how to fly'

Please join us on our journey of Hope. Some times we are 'standing' and some times we are 'flying' - but one thing is for sure....our two amazing children (Will and Sasha) have been the biggest blessings in our lives.
While they struggle through life-threatening illnesses, they also show us how incredible life truly is. Their joy, laughter, fierceness, and tender spirits lift us and carry us through any storm we've had to weather!

Thursday, March 26, 2009

The D.C. Trip Outcome!

Well, we are on the train heading home from DC. We made it with moments (literally) to spare!!!!!!
Our trip was INCREDIBLE! Last year was GREAT too - but this year had a different feel to it for me - like something really WAS going to happen...and I know others felt it too! The problem last year was that the legislation hit the floor late in the session and the timing wasn't the best - THIS YEAR it's PERFECT!
Wednesday night we met with all the IDF staff (who just TOTALLY rock!) and we met up with other PIDD patients or parents of PIDD patients. We had some time to chat and catch up and then we got down to business - it was a good work session - and we ended our night around 9ish.
We got up this morning and had breakfast - we had 2 legislators at our breakfast - and they both got up and spoke and were BOTH just wonderful!
For each meeting that a patient was attending with a legislator, the IDF had one of their staff scheduled to come with them - it was SUCH a relief knowing that.
Our first meeting wasn't until 11 - so we had from 8:30ish to 10:30 to catch up. We were a group of 3 - it was me, Michelle and Towma (all "Team Hope" mamas!). We sat and discussed how we'd go about our meetings and our talking points.
Our first meeting was with Congresswoman Niki Tsongas. She popped out of her office for a moment and we had a brief but encouraging word with her. We met with one of her staffers - Daniel - and he was receptive to our requests but was unable to answer either way until he was able to speak to the Congresswoman first.
It wasn't a 'negative' experience - and we understood why he couldn't commit at that moment - so we left feeling quite hopeful in any case.
Our next meeting was at 12:30 with Sen. Kennedy's office. We met with a staffer as well - what we didn't know was that he was a physician! We were absolutely THRILLED to know this as it makes getting our point across that much easier...and in his words, this legislation was a 'no brainer' and he said he couldn't imagine Sen. Kennedy NOT supporting it because it truly stood for SO much of what he believes in. This was HUGE because he has SO much influence in the Senate and in the committee that has a lot of weight in the decision of this legislation. He also said he couldn't imagine Sen. Kennedy not supporting something that Sen. Kerry put forth on behalf of patients in our state.
Our meeting ran a bit longer than expected so we ended up RUNNING (beating feet - literally) through 3 buildings to get to Sen. Kerry's office. Of COURSE we had to be late to HIS meeting and OF COURSE the president of the IDF was kept waiting (as she was there to personally thank the staff and present a plaque for his champion efforts on this issue). We were only about 8 or so minutes late....but STILL not what we wanted!
Sen. Kerry's aide was wonderful and she stated that this legislation has had A LOT of support since it was set forth just 24 hours prior - which she said is a REALLY good sign and they are hopeful and feeling confident that this will be successful this time around. It was SO encouraging to hear this!!!!!
Our final meeting was at 2:30 with Congressman McGovern's office. We met, originally, with his chief of staff (who was awesome!). As we were about to conclude our meeting - Congressman McGovern walked in! We re-stated our hopes and discussed the legislation and the reason we needed this legislation and, before we could finish our 'ending' part - he said, "I will DEFINITELY become an 'original' sponsor of the legislation - I will call Rep. Brady and Rep. Israel RIGHT NOW and sign on. I will also get our MA legislators ALL on board and a key Rep. (Markey) as well! We told him that we weren't sure (but were hopeful) about whether or not Congresswoman Tsongas was going to become a 'original' sponsor of the legislation - and he said that we shouldn't worry about that - and he also reiterated what Sen. Kennedy's office said about the fact that Sen. Kerry presented this legislation and his fellow colleagues will follow suit in supporting such an important bill on both the House and Senate sides of this equation.
There were tears of joy because we knew how important this issue was for SO MANY and knowing that WE helped to move this along really felt SO satisfying and empowering!
Of course, a trip would not be a trip for us without an adventure!
Our time was very short between our last meeting and us having to catch the train - our last meeting was scheduled at 2:30 and we had to be on the train by 4:05 (technically sooner so we could board). Sounds like a lot of time, right? NOPE - not at all when you consider having to go from the one of the House buildings to the hotel to get your luggage and then to the MASSIVE train station and find our way through the proverbial maze to our gate. Let's just say we have NEVER moved so fast in our was like it was from a movie us running to catch the train....all that was missing was the train departing before we got on (we DID make....BARELY!).
We are currently sitting in the 'Quiet Car' - NO loud talking and NO cell phone usage...and THEY MEAN IT, LOL! (Although, someone should REALLY tell that LOUD HIGH PITCHED BUZZ that there is NOTHING loud allowed in the "Quite Car" cause it sure sounds like nails on chalkboard!
Even if we wanted to move from the 'snooty' car (lol) we would not be able to as the train is 'sold out' and it's 'standing room only' for a few people! YIKES!
Our next stop is Trenton, NJ. If all goes well we will be home around 12:15 a.m. on Friday morning....this ride is going to DRAG on forever!
We are SO exhausted and SO sore.....the weather was crummy and rainy - but I have a feeling that our MA group wasn't the only group that had good results today...I can't wait to hear all about the others!
I just can't tell you how good it feels to take something that isn't really 'fantastic' (such as lack of access to life saving infusions and better access to home infusions) and DO something about it! I just admire those out there who came out to join the IDF on this day - and I admire those out there who are fighting to get what they need....we're pulling for you and we will fight for you!!!!! Don't lose hope!
In other news:
I am SO happy to report that Will and Sasha are FINALLY on the mend. This was a really tough illness for both of them - but Will went back to school Wednesday and Sasha went back today. Ralph said that Sasha was pretty tired after school - but other than the yucky congestion - she's hanging tough! I talked to Will last night on the phone (BOY do I miss them both SO MUCH!) and he sounded SO much better!!!!! YAY!!!!!
Cloud 9 couldn't even TOUCH how positive and good I feel right now!

Thank you all for joining me on this journey to DC and sending good thoughts and sharing the success with me! I wouldn't have it any other way!
Once I get home I'll upload pictures - too many to load up from today via my cell/laptop connection!
Thanks again so much and a HUGE "Thank You" to IDF, the legislators AND the people out there who shared their voice!
I may be only ONE....but I sure can make some noise!

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