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Thread: Our Rally experiences - wow .....

  1. #1
    Senior Member zillazangel's Avatar
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    May 2004
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    Our Rally experiences - wow .....

    First, I am sorry it has been so long since the Rally that I have posted. We went to my in-laws after DC and we were there all through last weekend. While we were there, I injured my back quite badly so I could not even sit up to use their computer to post. And once we were home, it took a bit to get back into life after being gone 8 days.

    Anyhow ....

    What can I say but WOW!!!!!!!!!!!!!!!! First things first, there were two anonymous donors who paid for Chad and I to attend. I can't adequately convey our gratitude in words. It was worth it 1000 times over and we would not have been able to come without you ... you know who you are. You are special to our hearts. Thank you.

    We attended, as it turned out, only the first day - the conference. We got there late, as par the course for us. We were staying with another CC member, so getting all of us up and going was quite the task; 2 quads and 1 five year old ... and me who hates to get up in the AM! (note that 95% of posts are probably between 11 pm and 2 am!!) My son, who is 5, sat in Chad's lap and WATCHED the presentations ... academic powerpoint presentations. He sat there for 2 straight hours and then we took a little walk for about 45 mins. He sat through lunch, which was another academic talk by eating his lunch with excellent manners I must say, and then played on the floor quietly for the rest of the time.

    The most amazing part is that he really carefully watched the video from the KK Institute and a few days AFTER we left DC, he said to Chad: "Chad, I want you to go to that place that will make your legs walk for you so that you can learn how to move again. They can make you better Chad! I saw it on the video!". We were both moved to tears, it was so wonderful. We are actually going to go to Kennedy Krieger for an eval of Chad - no one has EVER offered one iota of help for actual improvement, and most docs write him off with a he's dying shortly so who cares kind of attitude. We also talked extensively with the stim bike people and they have followed up already and we are ready to do battle with Chad's insurer now that I am so convinced of the efficacy of these things.

    We LOVED ProfessirX's performance at lunch and we bought the CD and the documentary he produced. My son and I missed the testimonials because he was due for another get-your-wiggles-out walk, but Chad was really touched and moved by the speeches; he told me all about them.

    My little boy and I went to the Air and Space Museum on Monday as I knew better than to try 2 days in a row of sitting quietly. Then when Tuesday AM rolled around, I set the alarm for 6 am to get the whole crew ready for the Rally, but after I cathed Chad, I just could not MOVE I was so exhausted. I set it for 7 am ... same thing. I just could NOT get up. We all ended up awake around 9:30 am, by which time it was too late to get to the Rally. I really regret that, but I also know that I have to take care of myself and I had worked alot those few days juggling care responsbilities, kid duty and trying desperately to find something I could eat!! (I am a celiac, eating out is virtually impossible for me)

    We went away from the Rally events really energized with our imaginations sparked with new possibilities. I am super excited about going to KK - I'll post an update when we have a date to go. It was terrific to meet so many people - I only wish we'd had more time to meet more people!! We got to know our roommate very well and she is just a really cool person. My son misses her and her dog so much, not a day goes by that he doesn't ask about them! (you also know who you are )

    It was an incredible honor to meet Dr. Young and he said some incredibly kind things about me both to Chad privately and to me directly ... thank you so much. I do indeed love Chad with all of my heart and he is my world. Together with my son, I could not imagine being happier (despite occassional meltdowns of trying to do it all + 14% ).

    I'm sure I've missed alot in this post, but I just want to thank the organizers sincerely, it was an AMAZING experience. We will be back every single year.

    Ami

    p.s. Chad already wrote our NC legislators about the CRPA - that is a total first for him, he is usually (self described) apathetic about any of those sorts of things. But now he is very activated and motivated. *** happy heart *** !!!
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  2. #2
    Ami, I'm glad you and Chad got to attend W2W. It was exciting to see you there. And your boy is really sweet well behaved lad. We were all impressed.
    Daniel

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