Tuesday, September 29, 2015

FPWR Confernce

As always, we had a great time at the FPWR conference. I think at this point the conferences have become a bit of a family reunion. You see some of the same people each year and put real live personalities to the names and faces you have become so close to through technology. 

I remember the first years, the science blew me away! I could not believe how many scientists were working on helping our little Ayden Jane! (okay, and all the other kiddos) At this point, the exhaustion from so much information on Saturday was not as bad as years past so I guess that's progress.

This year we arrived a bit early to help out where we could and because our flights worked out better that way. We did not know there was a 'science' day ahead of the conference - likely because we are not scientists. But Kayla, in particular, wanted to listen in. I asked permission and we slipped in the back for the second session. She loved it. I followed some of it but much of it lost me. Still it is oddly comforting, even if I can't comprehend exactly what they are doing, to know that there were so many scientist on the job. The room was full and they were kicking around their ideas with one another. Love having all that brain power on the job of making life better for people with PWS.

At one point in the conference, Kayla asked me what was on my page or blog or whatever because everyone was so excited to meet her. Then she realized that someone was mistaking her for "Ayden Jane's mom." We thought it was funny and didn't think much more of it. After a few more cases of mistaken identity someone pointed out that Kayla was my profile picture on Facebook so naturally people thought she was me. We realized, back in August, I put her picture there for her birthday and had just left it. It's Ayden Jane now... no one should think she is me.

Once the news was out who the real me was, it was really great to meet so many new families. I started this blog a long time ago because there was so little out there as to how day to day life might go. There was not much online about kids doing well with PWS. I just wanted to know it was possible that Ayden Jane would manage an awesome life with PWS. I didn't need a promise it would all end up rosy. Let's be honest, there are no guarantees with any of our children, typically developing or not. The thing we love as parents is that they are born with endless possibilities. We love to dream of what they might become. I prayed God would bring some people across our path to give back the hope that a great life was possible. I searched long and hard and God provided a couple glimmers of hope I and clung on tight.

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