Saturday, January 11, 2014

Mom, I'm Starving

Okay, so what mom hasn't heard the words "Mom, I'm starving" from their kids.  Most kids do have a flare for the dramatic!  But what happens inside a mom whose child with PWS utters those words is ... hard to describe. 

First there is shear panic.  This is it!  Life as we know it has come to an end.  If I take my eye off her for 2 seconds she will eat the entire pantry!  She is going to wake up tomorrow and cry for food all day long and I will have to choose between the pain of listening to her cry or allowing her to over eat and harm herself.  (I think it is hard not to stay at this point for a while...)

Next there is a breakthrough of rational thought where you realize that you might make it through the week however, it is going to require a new plan.

New plan helps both mom and daughter, but does not take the hunger away.

Finally, you realize that it is time to tell your sweet kiddo to get used to the feeling, because her body is tricky. 

Well, that's how it's gone for us this week.  Now, I will say that I have not heard Ayden Jane say that she is hungry with any sort of passion before.  Yes, she will say that she is hungry, but I look at the clock and think, well of course you are!  The past couple of days at about the same time Ayden Jane has been sure the world was going to come to an end if she did not get a snack.

Once my panic subsided.  (okay, once I gathered the strength to throw the panic out the window)  I realized that over Christmas we had a great eating schedule.  Breakfast around 8:30, lunch around 12:30 or 1, a snack at maybe 3 or so and supper whenever.  (or not at all even)  Back in school breakfast comes early, but lunch is at 10:50!  So, when AJ gets home from school she wants to snack until supper!  Today, when we took a walk, I talked to AJ.  I told her that part of PWS is that her brain will try to trick her and tell her she is hungry when she doesn't really need food and if she listens she will not be healthy. 

Let me just interrupt here to say that Ayden Jane never ceases to amaze me.  Her response was not to argue or complain.  In fact, I think she already knew that she was feeling hungry when she really wasn't because she almost seemed relieved to hear it. She said, "Oh, so that's why you say no sometimes when I feel hungry.  Okay, we will work on it." Then she just asked how she will know when to listen when her body says she is hungry.  Seriously?  That is the question a 6 year old asks when they discover that they will feel like they are starving sometimes and not be allowed to eat?

Next, she just wanted to make a plan.  Plans are good.  I told her that she could have a snack when she got home from school but then that was it until supper.  No asking for anything else and that way I can get supper ready and we can all enjoy eating together.

We will see how that goes next week, but I am changing her world next week as I temporarily go back to work full-time!  Wow do I have some ducks to get in a row this weekend!!


  1. that is truly *amazing*. She's really such a remarkable child. I wish we could unlock her secrets of how all that works in her and what combination of things worked together to create that. I bet it's very gratifying to know you had a hand in that.
    Laurie S.

    1. I'd say it is as much humbling as gratifying. I always have that feeling that I really have no clue what I am doing and it will all fall apart with one wrong move.... As for unlocking her secrets I joke with Dr. M that I am going to send her AJ for a while when she has nothing else to do (ha!) and let her figure it out.

  2. I also have a son with pws! He is amazing! We are from dominican republic, his weight is our only concern so far because thats the only thing we havent been able to control as it should be, but we keep trying! God bless ayden jane she sounds awesome!!!

    1. Sounds like your son is doing great as well. Just love all these little ones with PWS!