PHF day at Capitol Hill

Well, the West family is back from our vacation to DC.  There was so much planning, prepping, fundraising, packing, driving (LOL) that went into this trip.... but it was a huge success! :)  Alas, with every trip there are ups and downs and speed bumps that are meant to allow for a deeper look into what is going on.  So, I will try to share with you the whole trip, without boring you too much as well. :)

Wednesday was the day we set to leave, when I went to work that morning we still had a rather large to  do list as well.  Such as pack the food, grab the phone cords, get a wheel alignment.. You know the basics! Well the wheel alignment was the first of a few speed bumps given to us.  You see, there was more wrong with our car than just what I thought, so to make the details short... $200.00 later, and 4 hours after dropping it off we had our car again at 4 pm.  Well, I had hoped to leave no later than 3 that day, so now I was trying not to get on edge. We still had to load the van (the rest of the to do list was done and we were just waiting!), get to the hospital film room to grab a disk of Willow's recent scans to take with us for an emergency instance, and then by 5 pm we were off on to I-96 headed East!  We stopped for dinner at Taco Bell in Brighton, MI... then continued on! Well, the original plan (you love how there was an original plan but really things never went by it!) was to make it to Ann Arbor for dinner (we weren't that far off in Brighton) and then for a hotel that night in PA... Well we got such a late start and I personally hate to drive at night, we stopped in Elyria, Ohio at a Quality Inn.  Not a bad place if you are looking for a cheaper room.  :)  Free breakfast in the morning, and then we were off again.

Thursday was supposed to be the day we arrived by noon and got to sight see before the Meet & Greet Reception at 7 pm.. Well again the best laid plans huh??? LOL  So we got to Elyria, and I checked the triptik and it said we had 7+ hours still to go that day!  That meant a full day of driving, quick stops at the rest areas and lunch in the car... So we started our trip by 9:30 that day (after a quick trip to the bank as it was pay day and we wanted to make sure to cover all of our bases), we were on the road!  We made it to the hotel at 5:30 that night and ordered pizza to the room as our meeting was not that far away... The meet and greet went wonderful, we got to meet so many other faces that I speak to on facebook often. That night we let the kids blow off some steam at the pool, after all in all the driving we had done, they really were pretty darn good and behaved so they had sort of earned it... lol

Friday was the day I had four meetings set up with different offices of congress reps.  The meetings went really well overall, I had another family from Michigan with me.  It was so great to meet someone else from our state.  Their daughter is 2 months older than Willow and is just learning to crawl, so it helped to speak of their abilities to the representatives. The last meeting with my own districts rep did not go so well, and so I will have to really think about what to say in the 'thank you for your time letter' I send out tomorrow. Jon and the kids went sight seeing and got to go to a spy museum in DC.  They all had a blast and was very excited to be there.  I was glad to have had such great meetings that day and then to chill out at the hotel afterwards with some of the directors before going to dinner.

Saturday we went to the zoo and Willow got to see elephants - she is in love with elephants. lol   It was so great to see her get so excited and squeal in delight! We were back on the road again by 2:30 and on our way back home.  We made it to Ohio (not Elyria, like planned), but at least made it into the state.  We stayed the night and then left again Sunday.  We got home around 3:30 where we just collapsed after unloading the car.

So if you want to see pictures, here is the link to them on facebook:

Here is link to Jon's pictures he took while there:

So I hope you enjoy them as much as we enjoyed being there. We were so blessed in so many ways on this trip and I will end it with sharing the blessings -
*gas was cheaper than we budgeted
*hotel room in DC paid for by foundation (allowing us to use the room fund budget on a room down and back during our drive)
*a car that despite having a bad serpentine belt, made it there and back
*great friends who helped us all along the way raise funds to get there to make a difference in hydrocephalus awareness

I cannot wait to make it back next year when we decide to stay an extra day and see more of the sights there are to see. :)

The four kids while at the zoo, can I just say that 92 in DC feels totally different than even 80 here in MI!


Donna West said…
So congress is out on recess currently until next week Tuesday, so it was not the actual public figure that we know that I met with in DC. Instead we met with the constituents in their office.
Rep. Tim Walberg I met with Jonathan Hirte a legislative assistant. He was quite impressed with our stories, very open and welcomed our comments, our reason for being there, took notes and asked questions! It was a great first meeting. Then we were on to Rep. Mike Rogers office which is the rep for the other family that was with me. I allowed them to really push their story since they live in his district but still make sure she was aware of the PHF, the funding issue, the need for awareness, the need for her rep (we met with Shannon Brown) to join the Adult and Pediatric hydrocephalus caucus as well. Then we were on to Candance Miller's office where we met with Chris Stewart. In this meeting, he was truly moved by our stories, could not believe what Willow had been through but was obviously impressed by how she is currently doing. He had indeed heard of hydrocephalus before, just did not know how much it actually involved or could involve. This was the meeting where he was very emotionally attached to what was being shared which made it the best meeting of the day I would say because you could see and hear that he genuinely cared. The last meeting was with the office of Justin Amash which is my district and I met with Kurt Couchman. He was all about the budget, and funding and that 'I need to understand how the budget works' (yes that is a direct quote)which meant he was not listening to the fact that while the long term ultimate goal is more funding to the NIH we know that awareness is key to getting there. We were asking for him to tell Justin Amash about the caucus and hopefully come on board. As well as to share how hydrocephalus is affecting many families in his district as well as how great the children's hospital is here as well. But alas he was too dense to understand all that.... :(

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