Thursday, July 5, 2018

I Know What I Can Eat

Posts have slowed... obviously. It's partially because we are busy. Partially because life is sort of on cruise control. Mostly, however, it's because Ayden Jane is older. The things I would write about seem more personal somehow. I want the blog to reflect life with Prader Willi Sydrome for Ayden Jane. At the same time, she is just a kid who has struggles like any other kid and who wants their struggles broadcast.

That said, I haven't abandoned trying to write her story. I am just working on how to do so respectfully.

The struggle she had today is clearly a PWS struggle. Well, I guess it is really a 'medical diet' struggle. Ayden Jane works hard to understand her diet. She is learning well and proud of herself. Today she was at a camp and the director was concerned about giving Ayden Jane whipped cream on her blueberries. Ayden Jane knows she can have whipped cream but the director texted me anyway. (which I think was totally the correct choice. Better safe than sorry) Ayden Jane, however, is very bothered when situations like this come up and she knows, that she knows, she can have something and people doubt her. It may be more that she thinks they don't trust she's smart enough? Maybe that they think she is not smart? Maybe she partly worry's they think she is lying?  Whatever the reason, it REALLY bothers her. She held it in until she got home and then I got an earful of how mad it makes her that they don't believe her. That she knows what she can have and that she isn't going to eat anything she can't have because it would just make her feel awful and she wouldn't have any fun....

Having Prader Willi Syndrome means having a lot of rules about food. It means having to think with your head and not trust you body. It means having a great deal of self-discipline. At age 10 Ayden Jane is determined to use her head, follow the rules, and have more self discipline than most adults can muster. Great job AJ.