Friday, October 26, 2012

The "food life" of the PWS* parent

[*PWS = Prader-Willi Syndrome]

The topic sometimes comes up, among PWS parents, of "how have your/your family's eating habits changed since your child was diagnosed with PWS?".  Because Prader-Willi Syndrome has almost everything to do with the scheduled consumption of food by one's child, and the calorie-count of that food, it is often a standard consequence that the eating/food preparation habits of everyone in the household are affected, both for better and for worse.  Some parents are able to change their life 100% with the entrance of the PWS diagnosis, and they devote all of their time to becoming nutrition and supplement experts.  Most parents, though, are doing the best they can, keeping their child-with-PWS as healthy and slim as they can while muddling through as far as feeding the rest of the family.  "Food" and its preparation becomes a source of questioning and recalculating of eating habits that have been in practice for many years before the entrance of the PWS diagnosis. 
Take me, for example.

Like a good number of PWS parents, I sneak snacks.  I eat stuff I shouldn't, when I know Sophie won't see me.  Eating in the late hours of the day when she is definitely in bed is now a bad habit of mine.  I sometimes eat when I'm not at all hungry, because if I don't, I know that I'll become hungry in a moment when Sophie should not be eating, and to eat in front of her at that time would be cruel.

Then there is the "recipe collection".  I have probably 100 back issues of food-based magazines; "Cooking Light", "Everyday Food", to name a few.  There are several stacks of cookbooks on various shelves around the house.  I have a binder bursting with several hundred recipes clipped from magazines and printed off from the internet. I actually "cook", anymore?  As in, follow a recipe, make something "from scratch", spend any prolonged time in the kitchen?

Not really, for various PWS-related reasons. 

Any extra time spent in the kitchen, when Sophie is home, in problematic.  She likes to hang out in the kitchen and sometimes wants to help me, even if what I'm making is really simple.  So then I worry, should she even be IN the kitchen at all?  If she's watching me warm this up or make that, will she at some point sneak into the kitchen and try to make it herself (because I am ALWAYS telling her that this or that food item, if eaten without cooking it first, will make her very very sick - so as to somehow deter her from eating raw food product.  Except then, will she just use her clever brain, take the food anyway, and try to cook it herself??).  There is also the concern that, if something is cooking for a few hours and sending tantalizing smells all through the house, does that bother Sophie and cause her added stress?  Do I open all the windows to decrease the smells?  Should I just not cook or bake much at all?

And then, with all these cookbooks and food magazines and clipped recipes, of course it is now mandatory to consider the calorie-count-per-serving for whatever recipe. Sophie is eight years old now, and with the passing years I have kind of lost my desire to make much of anything - there is no longer any justification for making a recipe "just because it tastes or looks good" or "just because it was a comfort food when I was a kid", if one serving equals 200, 300, 400+ calories.  Certainly Sophie's portion can be adjusted so that she can at least have some, and the rest of her meal would be suitably lightened up.  That isn't hard to do, and I have certainly done that on occasions when it has been necessary.  It gets tiring and depressing, though, to approach every recipe with that precaution in mind.  Really, the more recipes I read, I start to question why any recipe, for any main dish, side dish, dessert, whatever, needs to be made with full-fat or full-calorie ingredients.  If the population of the U.S. is in the midst of an obesity epidemic, then why does any company or chef or food magazine or cookbook author produce recipes with seemingly no regard for the calorie-count-per-serving?  I have looked at recipes where the count is 600 calories-per-serving, and the serving size is one cup.  Now, obviously I am not going to make that particular recipe, as that is not healthy for anyone in my house let alone Sophie, plus her portion size for such a recipe would be so minute that it wouldn't even be worth it to put any on her plate.  But even though I know right away that I won't be making that recipe, I just have to wonder why anyone would make that recipe.  Why put your health at risk for the sake of that plateful of "whatever"?  Is it worth it?  Why spend the money on the ingredients to make something which, even as it tastes good, is increasing your weight or your risk of heart disease?  Why....

And on, and on....all these questions from looking at just one recipe. 

Looking at food magazines and cookbooks etc etc is fraught with conflict, questions, self-doubt and second-guessing, anymore.  I know of families where the entire family has gone vegetarian/vegan/gluten-free/sugar-free/carb-free/all-or-some-of-the-above, as a result of the PWS diagnosis.  One family switched to juiced-everything, and says that not only has this helped their child-with-PWS, the whole family feels so much healthier.  It seems inevitable that with the PWS diagnosis, simply walking into one's kitchen or eating anything at all, is an action which is so much less clear-cut than for the "typical" person or family.  Food consumption becomes a guilty pleasure, or a hoped-for cure-all for your child's diagnosis, or it's just a every-two-hour-chore with no joy in it at all.  I watch cooking shows sometimes and drool, not just because of what is being cooked but because of the person's freedom to cook whatever, without having to agonize over the calories and ingredients of the recipe.  The people on the cooking show actually enjoy what they are doing!  I'd like to get back to that, somehow.  I'd like to be able to cook and bake in my kitchen without feeling like I have to do it in the middle of the night or only when Sophie is at school, so as not to cause her any extra distress.

Well, off to figure out what to make for dinner.... :-).


1 comment:

Isaac's Mom said...

Such a great post - I know my eating habits have become much worse since our diagnosis - I too sneak food and eat late at night after he's sleeping! Oh if I could put as much focus into my health habits as I do his. :)