Well, we'll be off to Orlando for the NHF Annual Meeting later this week. (And hey...we've got a housesitter so stay away) If there's anything GOOD about having a bleeding disorder it's that the meetings are usually someplace warmer than where I'm from!
For years I've gone to the meetings solo. I'm a member of a consumer advisory board for (insert big drug company name here) that has a meeting in conjunction with the Annual Meeting. I go and pick up a few trinkets, have my meeting, see old friends, go to a couple session and then come home to the boys. We couldn't afford to all go so the males waited at home for me. (Even the animals are male. It's getting a little outta control.)
But this year I get to take all my men with me! And the reason they all get to come is the best part.
#1 and I were asked to be a part of one of the early morning symposiums put on by a big drug company! (Actually they called and wondered which one of the boys was within the age range they wanted and #1 happened to be the one...so they would've taken either one, #2 will get his turn next) We were asked to talk about our life with a bleeding disorder, listen to a Doctor and a Social Worker's take on our issues and then answer a couple questions from the audience.
The company came out and video taped us over two days late this summer. They asked us lots of questions and took lots of pictures. #1 had his own questions to answer and told them exactly what he's been through. They videoed the boys rockin' out together. It was so awesome. This little man spoke so eloquently. He's 11. He left the group (7 people plus legal) speechless.
We're going to be on a stage in front of hundreds of people. Some of them will be doctors and social workers. But most of them will be other families and consumers living with a bleeding disorder. They'll hear my son talk about the ups and downs. They'll hear me admit our mistakes and my fears for the future. For the new families, my son(s) will be the first time they've seen a kid with hemophilia. I remember how THAT felt! "Wow, if that boy is o.k., mine will be too."
I can't wait! Mostly because that part will be done real early in the morning on Friday and we'll have 3 more days of hanging out with some of my favorite friends, eating good food, partyin' like rockstars, stayin' a swank hotel, checking out the sessions.
Maybe "putting yourself out there" doesn't always end up a train wreck.
See you in Orlando!!!!!!!!!
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3 comments:
Good luck to you and the guys - I hope your session goes well. (And the legal beagles keep their mouths shut.) And have FUN!
Oh, Mama, you can bet the goal for Denver is to be allergy friendly. Mark my word, anyone and everyone I talk to will make note of the allergy issue on their evaluation forms! It took us a lot of hollerin' for NHF to take the little kids. We're comin' for you next!
Hope you have fun at the convention. I like your blog.
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