One Small Step

I have come to terms with the fact that I can't do it all. Okay, I still think I can in some areas but in this one, I give. I was so excited to attend the One Small Step walk in Williamsburg this year. It seemed the perfect answer to just not being able to head to LA for the FPWR conference. Alas, finances have made us choose between PWS family/Ayden Jane funds and our own little family needs. We put a lot of our families needs on hold to get through the first years, the crisis years, for Ayden Jane. I don't mean that to sound neither noble nor whiny. It was the right choice and we have all come through well.

When AJ was diangosed at 8 months, I dove into the internet. I had no choice. There were no living breathing people that I could connect with that could offer me the hope I needed to hear. Thankfully, my parents understood the need for us to make contact with others, with real information, real faces, real hope... and offered the necessary cash to get us there. The numbers were few but the hope offered was astounding. Watching people way further down the road be, well, normal people. I met kids with PWS and they were admittedly a bit quirky, but great kids. The research was like listening to science fiction but it was real. We left finally feeling for the first time since diagnosis like maybe we could survive this thing call Prader Willi Syndrome. Maybe our new normal could be a good normal.

In some ways I feel like I missed out on the lives of the 3 older kids for a period of time. That is my only regret in the first few years. The marathon was something I needed to do. It was both time for me to process all that I was reading and something I could DO to help Ayden Jane.

So, as much as I have loved following all the incredible excitement going on in the PWS community, I am putting our resources to use here at home. I will very much miss seeing some of the friends we made during the 2 years we managed to get to the conference. There is something amazing about meeting up with others who walk a similar path. In fact, nothing like it. For this season, though, I think it is right to put our little family first. They are pretty awesome.

Catch the excitement of the One Small Step walks at the link below. We will not be able to walk with our friends in Williamsburg, but we will walk with them in spirit. (And miss them desperately)

http://onesmallstep.fpwr.org/dw/users/aydenjane/williamsburg