Joubert Conference 2015 part 2: Thanks and Appreciation

No, thank YOU!

And here's part 2 of my Chicago post! In part 1, I wrote at length about the people I met, places I went to, and stuff I did. Now, I want to give my personal two cents about the whole event.

This post could get sappy. You've been warned.

First off, the whole family found it a fun and eye-opening experience. My mother couldn't get over the similarities between me and some of the other kids. It actually got to a point the first night where she could barely even look at me without starting to cry. But, she pulled it together and was very proud of me :) The last night of the conference, several other mothers complimented her on parenting after seeing the two of us together, which I thought was just the greatest!

My sister had a good time, also. She really contributed to the Q&A after my presentation and it was honestly very touching to hear her be so honest and up-front when asked about being a sister to me and coping with the disability. She really hit it off with some of the other siblings and I think gave a few of them some much-appreciated advice and support. A couple parents really took to her as well.

As for me, well, it was awesome! The amount of amazing people I met on just the first day was unbelievable! I made a comment in my last post about being overwhelmed, and it's the truth. I've gotten tons of comments and compliments over the years from parents, doctors, teachers, and other adults and professionals, but to see and hear from kids and other adults who not only have the same rare syndrome as I do, but are also so similar to me in so many ways, and were eager to share their experiences? Like I said, overwhelming.

It was also great to see so many of the kids, especially the older ones, interacting and having fun together! It was just something I noticed this time, compared to Minneapolis, and people were greatful for me pointing it out.

The organizing committee labeled the Chicago conference the PosABILITIES Project to showcase what kids with Joubert syndrome can do, as opposed to what limits them. For what it's worth, after everything I saw and experienced, the committee couldn't have picked a more appropriate title.

Anyway, that's my two cents about Chicago. Thanks to everyone who made it great: the Foundation for giving me yet another opportunity to share my story, my family for coming with me and sharing in the experience and, because I obviously haven't said this enough already, the parents, other adults and kids for listening, chatting, and being awesome.

Phoenix 2017!


Cheers!