PWS

So, May is/has been Prader Willi Syndrome awareness month.  I am not entirely sure what to do with that.  I am not shy when talking to folks about what Ayden Jane does deal with.  People who know us learn pretty quickly that diet is a big issue.  That Ayden Jane has several therapies and that doctors, blood work and x-rays are just a part of life.  That her immune system is not quite right and she has a hard time recovering from illness (likely not a PWS thing, just a thing complicated by PWS).

However, many of the things that are down right frightening about PWS are very much kept at bay with Ayden Jane.  Most people would just not be able to connect those things and Ayden Jane.  She just seems even more comfortable and a part of her peer group as she gets older. I was just chatting with a friend tonight about how AJ is just so totally comfortable socially now.  She is confident in who she is and can play by herself and yet she fits right in with other kids and plays very well with them. I guess a part of me doesn't want to scare people off??  Or make them look differently at AJ?  Things like, yep, we treat food carefully, but we have no need to lock or panic.  I frequently leave brownies or cookies out on a plate in the kitchen and I don't even think about it.  Ayden Jane does not deal with the behavior problems I hear about.  She is stubborn and challenging at times, but more in a 5 year old way than a PWS way. 

We do not deal with daytime sleepiness, cognitive delays, autism, sleep disturbances, eloping (anymore), social skill deficits, speech issues, academic deficits, skin picking, ...

I have immense respect for my friends who deal with these things and more daily.  The one thing I do understand from experience is that PWS is relentless just as any chronic medical issue.  As a parent you do not get to forget about the syndrome for even one second.  Ayden Jane has and will have PWS every minute of every day for her entire life.  Sometimes we are tired.  Tired of therapy, tired of keeping a watchful eye, tired of researching and reading every scrap of information that might help, tired of advocating with doctors for what we know we need, tired of worrying, tired of fighting insurance companies, tired....

For those who have an interest in understanding what PWS does 'offer' many people with the syndrome please check out Ali's blog: Diving into the Waves as she has done an amazing job this month of May of highlighting one bonus feature a day of what life is like for most with PWS.