Thursday, March 20, 2014

I Have a Great Life

Lately, Ayden Jane has really been taking on the responsibility of Prader Willi Syndrome.  That sounds really strange.  I am just not sure how else to say it.  She is 6, but she has such a maturity about handling all that PWS has to 'offer'. 

Starting with a funny story to illustrate.  Ayden Jane definitely likes to be 'the boss'.  She is sure she knows what is best pretty much all the time, but she is 6 so it is not often she actually gets to play this role or make the rules.  One morning when she was particularly exasperated with having to tow the line my way she says, "When I get big and go to college I am not going to listen to you anymore.  I am going to be the boss and do anything I want.  Well, except eat sugar, but I'm going to do everything else I want to.  I will go to bed when I want, I'm going to wear whatever I want..."  It really cracked me up.  Oh the sassy tone!  I love, though, that she knows that making good food choices is just non negotiable. 

Then today after school.  She hopped in the car and said, "Mom, so how do you think Dr. Miller is coming along with fixin' my Krebs Cycle?"  Not your average afterschool question...  We chatted a minute about that and then I told her she could ask Dr. Miller when we see her in June.  That lead to a whole conversation about conferences and why we have conferences... 

I decided to fill her in on a little plan Dr. Miller has been considering.  I told her that Dr. M might want her help her with talking to some parents of kids with PWS about what foods make her feel good and keep her brain working well and how sugar makes her feel.  She said that those are easy questions.  That eggs, avocado and coconut make her feel good and that sugar makes her feel yucky.  She wanted to know why the parents wanted to hear from her cause she is just a kid.  I told her because we don't know what it feels like to have Prader Willi Syndrome.  We talked about how when a mom and dad are told their baby has a problem and will have to work harder and have lots of rules about food and stuff they can get a little scared or sad.  They aren't sure that they will be able to help their child.  She told me that they can do just like we do.  Work hard at stuff if they need and look on the computer and find the good foods that are just as good as sugar even though they don't have any.

After a bit more discussion Ayden Jane about made me cry.  She summed it all up by saying, "It's hard sometimes having Prader Willi Syndrome, but don't worry Mom I have a great life."

How did a 6 year old get so smart?!  Such an incredible spirit in this kid.


  1. You are a wonderful momma raising a smart, sweet, positive little girl. WaY TO GO!

  2. Oh, my gosh...I am copying and saving this post FOREVER. Reading it and re-reading it on good days and bad days and all the days in between!!!

    1. Ayden Jane will hang out with Ellie over the years and show her how to role!