Ayden Jane and I took our usual long walk with the dogs this evening. Topic of conversation? Prader Willi Syndrome.
Her questions revolved around sugar and how she doesn't eat it and what happens if she does.... the usual. Then she branched off and asked if all kids with PWS ate the way she does. She wanted to know how kids who don't eat the way she does are different than her. Are they fine? Do they feel awful all the time? Can they do all the stuff she can?
I was very honest with her.
She wanted to know why it was hard for some kids not to eat sugar. She said, I don't know why everybody thinks it's so amazing that I don't eat cookies or candy. I asked her if it would be hard for her to stop eating bananas and grapes. Oh the panic... I used it to show her how it is just easier not to eat something then to learn to love it, and have to give it up.
She does not know the other side of PWS. She only has two friends that she knows well with Prader Willi Syndrome. She talks about them a lot, but they are younger and she see no difference in them compared to other kids their age.
She wanted to know why I know so much about PWS and why Dr. Miller wants to know how sheis doing even when she is doing good.(It was a long walk...)
I told her about kids who struggle and the ways they do. I told her about a friends son who doesn't struggle and how awesome he is doing. I told her she is special because she is one of the oldest kids to eat the way she does, take the supplements and work really hard from the start and it is really helping her. For the first time, I told her that her first doctors did not think she would be able to do so much. They told us that she would not really be able to keep up with her friends. That she wouldn't be able to do things like ride a bike or surf because she wouldn't have the balance.... She asked, "what's wrong with them? I can do anything!"
We talked about how most peoples bodies tell them they are hungry when their body needs fuel but also tells them they are NOT hungry when they do not need more fuel. But that PWS bodies can't do this well. She said, "I know. Sometimes my brain tells me, remember you just ate, but my belly tells me it wants more. I just tell my belly to stop tricking me and I go play."
Her understanding was unbelievable and she smiled and jumped up and down and said, "I really do feel special. I am going to do everything even if it takes extra work because I know we can find a way to make anything happen."