Five for Five: Impact

Teen/Adult discussion group, JS conference in Chicago. Photo used with permission of some of the parents.

Finally finishing this! Sorry for the long wait. Life and stuff.


5. With JS, I'm learning that what I do has an impact

Not that I didn't know this before I was diagnosed with Joubert syndrome. And I'm not being self-deprecating either. It's just that, in the last couple years (or even just months!), I've started to see the personal side of what I say and do.

I've actually met people who have read/are reading my writing and are watching my presentations. Furthermore, I've met other real, in-the-flesh people with JS (including, among many others, the awesome folks in the photo above!)

Hearing from parents, siblings, and other family members is great, but it's the other people with this disorder who have shown me how much of an impact I can have.

To me, interacting with other people with Joubert is better than any hit on a YouTube video or random "Like" on an article from someone I'll never hear from again. I get to know them personally, what they like and dislike, and what they feel they can and can not do. And, most times, they seem thrilled to be able to share!

I may feel like an "old-timer" sometimes when speaking, answering questions, or interacting with kids half my age, but it's worth it when I get an inkling that something I've said or done could allow a younger person with Joubert to be a little more independent or feel a little better about themselves.


Cheers!