MPS SPIRIT Confrence

    Today was the SPIRIT conference, which is basically a meeting solely for young adults with MPS related diseases. Waking up before seven AM was starting to get old, and honestly I was a little jealous that Triston got to sleep in while I had to start getting ready. However, I finally rolled out of bed and started getting dressed. Once we finally found where we were supposed to go mom, and I started to eat some breakfast, a nice toasted cheesy egg croissant and yogurt, from the buffet. Sadly we learned a few minutes later that we were in the wrong room. Luckily we didn't get in trouble, but we did finish our food and rush to the right room.

    I said goodbye to mom as this was for the young adults only, Samantha my friend from California was co moderating some of the discussions we'd be having. Starting off it was basically the usual introduce yourself bit, which was nice getting to know so many people that share something with you. Then we discussed how the conference had been, and I think we all agreed we wanted the SPIRIT part to be more towards the beginning so people had more time to hang out, and do things with each other. Another note is that there should be more meetings focused on us, the young adults. For so many years the conferences were for the families and children suffering from MPS. Well thanks to God, and new medical breakthroughs we are getting older. So, now we need things more focused on us in our adult phase.

    We then split into two groups for discussion one for relationships, and one for real world experiences. I stuck with Samantha in relationships. We discussed friends, family, and some love interest. How it's not easy making friends at times, and how we feel like a burden to those we care about at times. I think these meetings are also good because some people feel safe dumping the struggles holding them down knowing that they are safe to do so.

    Finally our last discussion we got back as a whole group and just reviews the highlights from each previous conversation. We ended with a group picture and made our way to lunch. Normally the meeting is longer but due to disney they shortened it giving people time for parks. When we were out I checked my phone and triston had let me know he was having lunch with some family that lived nearby and would be back soon. I let mom know we were having lunch and she got there pretty fast ha. While we ate they gave us our free tickets which I linked up to hers, and David's (step dad) magic bands.
    After I ate, I ran off back to the room to change, and write this post. I'm also planning on hitting the gift shops in the main building of resort while I wait for Triston to get back from his lunch (still needing to get a few gifts before this trip is over). Then after he gets here Magic Kingdom here we come!