PWS vaccation

I was chatting with a friend the other day. During the course of the conversation I was talking about how excited I am for Ayden Jane to be going to preschool... Then I heard myself say, "It's not that PWS is so hard each day, it's just that you never get a day off."

I thought a lot about that sentence over the next couple of days. Yep. It describes it well. I am sure it is the same for all special needs families or people with chronic diseases for that matter. Sometimes I just feel like if we could get a break from PWS for a couple of days we could get a fresh perspective and a new energy... Alas, it is just not possible.

I imagine as we continue to head down this road, we will have the opportunity to get away. Not sure we will stop thinking about how things are with AJ... Then I realize that it is Ayden Jane that will truly never get a vacation from PWS. I thought about other kids, like those with diabetes or some form of handicap. I know several teens who deal daily with these and it is just normal to them. Sure, they would choose not to have to deal with these things, but they have accepted it as a part of life and choose not to let it define them. That is what I want to teach Ayden Jane. I want her to know that she is an awesome kid with so much of value to give the world. That yes, it stinks she has to be so careful how she eats and has to work harder than the average kid... but that PWS is not who she is. I want her to know that she is Ayden Jane, a sweet, funny, energetic kid who, by the way, happens to be missing a bit of Daddy's DNA.