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.... :-).


Monday, October 15, 2012

Being still

[Photograph by Linda McCartney, 1996]

The past 8-13 years have been crazy.  Having children generally takes a person's life and shakes it...continuously.  Any moment where it feels like you've caught up, that things make sense, that you've finally conquered fleeting.  Add a special-needs diagnosis for your younger child into the mix, and what you have is chaos and stress multiplied.

I came upon the above photograph at some point before the birth of my first child.  I think I found it in a magazine, and clipped it to tuck into whatever journal I was using at that point.  Little did I know then that this photograph would hint at a stillness which I have yet to recapture, 13 years into the parenting journey.  But it is a beautiful image, I think.  The background in unfocused of course, but when I look at this photo I envision the environment of the background to be several acres of grass/garden/woods, sloping gently down to a small creek.  Just outside the area of this photo is a mug of steaming, freshly-steeped tea.  Other than muffled sounds of birds and a breeze from outside, it is absolutely, utterly quiet in the room. 

There is stillness in this image.  And in contemplating it, there is a stolen moment of time in which to be still.

I am not still very often.  That is a very difficult state to achieve for any woman with children, pets, and a house for which they are responsible.  When I got up this morning I already had the weight on my head of the list of things which I should do, must do, on and on.  For the past 13+ years I have belonged to a group of humans for whom "being still" must be, has to be, a conscious choice.  This group of people no longer has the sweet luxury of chunks of completely un-claimed time.  The much-celebrated and longed-for "weekend" really has no meaning.  Being able to sit down and watch a 2-3 hour-long football game, without interruption, absolutely never happens.  Sometimes "being still" means simply being able to stay in one place for several hours, without being called upon every 10-20 minutes (either mentally, or actually) to find something/cook something/clean something/feed someone/tend to someone else's needs. 

Do you choose to be still, every so often?  What does your stillness look like?


Tuesday, October 9, 2012

Things kids need

A new pair of these....(cha-ching! $130!)

And some of these,because, you know, that holiday is coming!

Tuesday, October 2, 2012

I wish I could be That Mom...

You know...THIS mom:  "It's a's a, it's SUPERMOM!"

The mom who cooks dinner every day, and vacuums consistently...whose kitchen floor is spotless, and who puts all the laundry away so fast it's like it never was dirty in the first place.  The mom who is on top of her family's diet, budget, and everything else AND is in perfect shape/health herself.  Now, when I take a deep breath and stop being hard on myself, I am able to remind myself that "SuperMom" doesn't really exist (which is probably why all the Google images of "SuperMom" are either cartoon images like the one above, or staged photographs).  But still...

I should be going to the grocery store today.  I'm not sure that's going to happen. 

There is a guy coming here tomorrow afternoon, to somehow make the Wi-Fi thing-a-ma-jig work in the house (which will hopefully lead to the Nook working, in the house...which would then lead to decreasing Brad's frustration with technology.)  The thing-a-ma-jig is upstairs, by the computer.  Thus, I feel like I should clean the upstairs - clothes put away, carpet vacuumed, office cleaned up....I kind of doubt that's going to happen.

The house is just full of...clutter, and/or "things that need doing".  Old toys that need sorting.  Old clothes that need sorting.  A pile, which can only be gone through when S is not home, of school papers about to topple over on the buffet.  A collection of "Lustreware" that needs selling.  Books that need donating.  Paperwork to file, an office to clean.  Volunteer work that needs doing, which so often anymore seems to trump almost everything else in terms of claiming my time. 

So, I don't know how productive today is going to be.  Sigh.  Some days are just like that, I guess.