Perspective

 

Fitting Joubert syndrome Awareness Month, here's a short, interesting story from the 2017 JS conference in Phoenix.

After representing the Board and conference's adult attendees at a scientific event one evening, I attended the Dad's Night.

Amidst all the fun, I overheard a conversation between two guys I've known for many years. One has three daughters with JS, the other has one who's affected and three who are not. For anonymity-sake, let's say Dad 1 and Dad 2 respectively.

Dad 2 asks Dad 1 how he does it, day to day with three girls with Joubert syndrome. Dad 1 says that they just do it, explaining that all three are close enough in age and similar enough that the family can usually just all go in one direction. He then asks Dad 2 how HE does it, with a family going in multiple directions. Roughly the same reply (they just do it), adding that everyone does their best to include his affected daughter. 

 I've kept the memory of that discussion in the back of my mind ever since that night. It serves as a good lesson in perspective, and how we tend to see each other.

What I take from it is that everyone has their own set of challenges and, for the most part, seem to deal with them the best way they can. Also, when you think you have it rough and are admiring someone in a "better" state, that same person could be admiring you for a similar reason.

Cheers