Will Sugar Break Me?

Ayden Jane has been asking a lot of food questions lately. Not in a hyperphasia sort of way, in a very appropriate sort of way. She is just really curious about why she cannot eat sugar or bread... and some people can. We talk a lot of how we eat food to make us grow strong and healthy, and sugar and bread does not make her grow strong and healthy. So, the other day she asked me, "will sugar break me?"

Hmmm. Tricky question to answer. In a way, those things would 'break' her if given frequently... I, on one hand, don't want to feed into the anxiety that is often part of PWS and have her flip out if she gets a dose of sugar. I also don't want her to have a cookie, not explode and then decide that all she has been told is a lie. It's just not that simple. I have seen the effects carbs from grains and sugar have caused. She becomes slower. Slower thinking, slower moving, just over all slower processing. (of course, she has only had a dose of these on rare occasions). Then that question is followed up by, "will sugar break Mckenna?"

So, what do I say? I told her that those things would not 'break' her, but they would not make her feel good. That she would not be able to run, jump, think or talk as well. That she would not have as much energy. I feel bad, but there is a part of me that hopes she feels awful the first time she sneaks a cookie! We talk about how she eats, including the fact that she has to eat a few bites of something with protein. There are still times that I have to insist she eat! I am glad about them and use them to teach the need to keep our brain and bodies fueled. She gets it. The other day she came and told me, "my belly isn't hungry but my brain needs a snack." We talk about food that will make her brain and body work best.

We also talk about learning to say our words better and getting new 'yellows' (orthotics) for her shoes to help her legs grow strong and make her run fast. I still have not used the term PWS to explain why all these things apply to her, but no one else. For now, she accepts that mom says that's the way she is made. The time is coming but I hope that when it comes, it will just be a name for what she already understands about herself. She is daily understanding that food is for fuel, exercise is necessary for fun and for feeling good, working hard at things means mountains can be climbed, family will be there every step of the way, supplements and shots are just a part of life like brushing your teeth... and a host of others.

Definitely wondering how that conversation will go. I am sure as she grows she will go through times where she accepts PWS and times where she sort of rebels against it. I just don't want her to ever let it define her. She is Ayden Jane, a unique, funny, high spirited little girl. That is what she will always be first. I want PWS to just be a foot note in her life. You know, by the way, she eats a little funny because of this thing called PWS.