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Thank you for checking out our website/blog. By journaling and updating this website we will attempt to keep friends and family up to date on what is going on inside our lives. Living with a terminal illness (ALS) and demonstrating how God is working in our lives to bring Him glory during this trial. We appreciate your gracious prayers and support during this season of our lives! We Love You All So Much!




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Thursday, May 15, 2008

We're home safe!


Well,
we got home last night safely and are so glad to be home. Tuesday was a great day and very busy. It started with a phone call at 7:15am from the VP of Goverment relations for ALS association in DC asking if Eric would be willing to speak at the breakfast at 7:45. Of course you know Eric said he would while laying in bed not realizing that was a half hour away! We quickly scrambled to get Eric showered, shaved, dressed in a suit with a crazy looking tie (not my strongest skill) and out to breakfast as I finished getting dressed and dried my hair. I was praying they would be running behind as I took the elevator down at 7:55 and as I walked in the ballroom, they introduced Eric as I cheered from the back! Whewwww! He did a great job as he motivated everyone there before they headed out to their meetings on Capital hill! Pretty ironic since we didn't even know what to expect ourselves but none the less enthusiastic because Eric was pumped up to be there. We headed out with our group on a bus and met my parents and met with reps for Vern Ehlers, Fred Upton, Carl Levin, Tim Walberg and Pete Hoekstra. Our reason for being there representing the ALS Association was to ask for support on the ALS Registry, which will centralize data for all people with ALS which will help research by leaps and bounds to have all of the info in one place. Second, to support HR 5454 which would help veterans who are diagnosed with ALS receive benefits regardless of when and where served since they are twice as likely to be diagnosed with AlS from military service. Lastly, we asked for 5 million from the department of defense for research specifically for ALS due to the strong tie to military service. We were pumped up and really not nervous because it was a personal environment and everyone was very receptive and supportive to ALS and our causes. It was a great day, but very tiring since we had to bounce back and forth between buildings. Our last visit had a tour of the capital scheduled with Hoekstra's office so we went with my parents to that and they got Eric a wheelchair to keep him from tiring out completely. The capital was beautiful. We had never been inside it before. This was about the only sight seeing we had time for. We ate in Georgetown with my parents for dinner at Papa Razzi an Italian resteraunt and got back to the hotel and crashed after I packed everything up. My parents were able to take pictures in the meetings and video some so we will post pictures when we get them from them. They headed south to the Smokey mountains to camp from DC and it is my Mom's birthday today! Happy Birthday Mom!! We are showing our house tomorrow morning and Sat morning to two different people so we are back to craziness. One good thing I wanted to share with you all as well is that the VA covers respite care for Eric and we have gotten that into place and someone from Angel Care will come out on Wed and Friday for 6 hours to help Eric with anything he needs and I can leave the house to get things done or work at my brothers with no worries! They actually help clean while they are here so I am estatic about this! This will be such a blessing for us so pray that the relationship is a comfortable one for Eric! Thank you to Brian for coming out to mow and trim our lawn tonight before our showing since Zach had a game. What a blessing that was as I know it was a sacrifice of his evening. Sometimes I just wish we could stop time to catch up, but we'll get there. Have a great evening and sleep tight!
Lori and Eric

2 comments:

Anonymous said...

you're welcome silly kids!

b (k is sleeping)

Anonymous said...

um, hellooooo...it's been 4 days since your last update. :)

guess who

Family is FOREVER

Family is FOREVER