Monday, May 26, 2014

PWS Awareness Day 26: It's a lot

Tonight's post will be a quick one, more of a reflection really.  As I've been reading through the many PWS Awareness Month posts on facebook, I've found myself stunned, even though I live it, by the amount of planning, research, and time that goes into raising a child with PWS.  Other parents are posting about so many things that I haven't covered yet, that I may not even get to in these 31 days.   Procuring growth hormone, scheduling sleep studies, testing thyroid and cortisol levels, arranging school accommodations, addressing GI concerns, attending a family party, supporting play dates, educating family, managing the food.  And the behavior, definitely the behavior.  The list goes on and on. And the thing that struck me today is how much work it all is.

I am not complaining. Our family has fallen into a rhythm.  Of course there are bumps, days that are particularly challenging, but we are pretty used to doing the things we do to support Oscar on a daily basis.  We are used to being home every afternoon so he can nap. We are used to planning meals that are healthy and predictable.  We are used to re-explaining the passage in the book three times.  We are used to interruptions and endless questions.  We are used to arguing with the mail order pharmacy about the darn needles.  We are used to constant oversight, clever framing, and employing humor as a survival tool.  We're used to driving an hour plus to certain doctors because, really, I'd rather drive far for the right doctor than waste time with the wrong one.  Ruby is used to explaining the monopoly rules and waiting for Oscar to count his money, again.  Abe is used to talking Oscar down from the precipice of a meltdown with grace.  We do these things and we don't think about them very much.  Because, honestly, we love Oscar.  He is funny, and engaging, and smart, and he is very much his own person, living with, but not defined by, PWS.

But when I read other people's posts, it forces me to recognize just how complicated and time-consuming all that planning and scaffolding can be.  It's as if the hazy blur I inhabit comes into focus for a minute.  Images sharpen. Thoughts crystallize.

"Huh," I found myself saying today as I read other people's posts, "this really is a lot."

(Oscar at Sea Ranch last November)


  1. It is a lot. (It's sorta like your first sentence "Tonight's post will be a quick one" and then you write 500 words!) I am learning so much this month. I hope when May is over, you at least post weekly.


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