Marathon

So I came back from the FPWR conference last Sept. so excited about the possibilities that the current research ideas might bring to life for people with PWS. I just knew that Gary and I needed to do something to help. Well, neither one of us is smart enough to actually work on solving the mysteries of PWS so fundraising it is. UGGG. So not my cup of tea. We talked about some ideas, but we needed Gary to pull off most of them and he is very short on time these days just trying to keep our little family afloat and finally pay off all the financial challenges from Ayden Jane. So, what could I do?

You hear that you should use your gifts,talents, passions.... and turn them into fundraising. Hmmm. Well, I do like to run. That is how it started. I thought maybe I could do the half marathon, but something in me just kept saying that I would not be satisfied there. I could do more. I told Gary that maybe I could run the marathon? Wow. I said it out loud. The world did not crash in... I started to train, but did not even considered 'going public' for quite some time. I ran and prayed. I prayed for the families of kids with PWS. I prayed for my knees to hold up. I prayed for wisdom in how I could help.

In the end, I am hoping for donations to pile up a bit, but I think my reward is already coming in. I chose to move forward. I am coming 'out of my cave'. Those of you with children with PWS know what I mean. Your vocabulary changes, your interests change, you have no clue what the latest movies or TV shows are and you cannot even look at food the same anymore (all the fun of ice cream covered brownies and all you can eat buffets is gone). You lose much of your ability to 'small talk' and your friends just want to help, but you don't really even know how they can.

The literature paints a picture of your child that is sad and scary. The list of challenges of PWS is long and depressing. Then your child grows and moves and laughs and plays... Such an amazing little girl in there and I am so glad that all the research and hard work has paid off and she is able to come out.

As I sit here and type, Ayden Jane is sitting on the floor near me playing with her toys. Mostly she is kissing them and talking to them, "I love you baby. I love you ball. Sit down bear. Good bear. In the basket hoo ha ha (monkey)..." I think I will go give her a big squeeze.