Tuesday, November 13, 2012

FPWR Conference

I have recovered from the trip and feel like daily I remember more and more details of what we heard.  The information was amazing and my brain has not been stretched like that in a while.  I just don't hear a whole lot of neuro biology or genetics at preschool.  If you want to read some great notes from the conference, just check out diving into the waves.  Ali took great notes.

It was great to catch up with old friends and make new ones.  What has struck me most about the experience this year is how different my perspective was.  The first conference we attended was when Ayden Jane was 1.  She had been diagnosed not long before and we still had so much to learn!  We were still coming to grips with what parenting Ayden Jane would be like long term.  We had our big long list of scary things that were supposed to come along with PWS.  We weren't sure how people could manage and have families and jobs...

I remember watching the families with older kids and looking at them and thinking that they seemed okay.  Even happy.  They figured it out.  Also the kids each had their own challenges, but none of them had to deal with ALL the possible challenges.  I was pretty sure I could handle that.

We went back the following year and learned a lot as well.  We still felt like much the newbies in the grand scheme of things.  We had a great time seeing many of the same folks at conference # 2 and reuniting.

Well, 3 years has passed since we made it to a conference.  I am no longer 'scared' by the possible challenges on the horizon.  I have heard about them all.  We have become one of the families that is happy and intact and has 'figured it out'.  I don't mean figured out PWS, but have found how to continue on with full, happy lives with a side note of  PWS.  We spent little time with old friends and instead enjoyed making new friends. We were renewed with hope as we listened to intelligent, passionate and compassionate scientists discuss the work they are doing to brighten future of our child.  The research has advanced incredibly since that first conference.  So much more is understood which has led to a crazy number of new ideas to explore.

So what stands in the way of Ayden Jane's future?  Well, nothing really.  Her future is bright because she is an amazing person.  However, at this point her future will likely come with some pretty big obstacles and struggles.  Prader Willi Syndrome is a part of her every minute from the moment she was born to end of her days.  I think that is where it is hard for me.  I hate the thought that my amazing child will carry a daily battle with PWS all the days of her life.  The research ongoing and funded by FPWR is providing incredible hope that one day Ayden Jane's daily battle may simply be a skirmish.  That will be the day our prayers are answered.

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