Running for Ayden Jane and FPWR: Myrtle Beach Marathon

Two and a half years ago, I was preparing to have our fourth child. I was pretty confident in my parenting skills and although I must admit she was quite a surprise, I knew we would love her and she would just fit into our family and our lives. When the unthinkable happened and she was not born 'normal' and healthy, we operated fairly well in emergency mode. After a while, however, it was apparent that this was not a short term problem and emergency mode is exhausting. As the tests for unimaginably scary disorders came back negative we gained a false sense of security and operated under the pretense that if we put in the extra effort for a few more months, she would pull out of it and everything would catch up to the picture I had of her in my mind before I met her. ¨I think, for me, the hardest part of parenting Ayden Jane is figuring out how to balance the strain of trying to do everything I can for her, learning all I can, planning all I can, working with her all I can... with the fact that this is not a short term deal and I need to take care of me and just enjoy Ayden Jane and Kayla and Noah and Mckenna and just chill out sometimes. I know that God is in control of Ayden Jane's future and that he wants me to enjoy the 4 amazing gifts Gary and I have been blessed with. But I also know that with each gift of a child there comes a responsibility to raise them, teach them and train them with the tools they will need to live out God's plan for them. That is a challenging balance for parents even when the children do not have special needs.  With a diagnosis like PWS, I knew I needed help to find that balance.  I could never do enough on my own.  For us, being a part of FPWR has filled that need to be doing all that we can and is allowing us to take a deep breath and have hope for Ayden Jane's future.

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.

It was hard and there were times I wondered if I can really do it, times I wondered if it was worth doing it, times I wondered if I can do it... yes, there was lots of time. I guess what it comes down to is I really don't know if I can do a lot of things. But the first step in doing them is to try, so I tried.

Gary's contribution to the project was to be sort of 'public relations'. Well, he managed to put me smack in the middle of an interview with the local paper. NOT supposed to be my job. Apparently I will have to continue to live outside my comfort zone. Why can't I just run quietly with my own thoughts...

Organizing the fund raising part is so new it has been hectic. There are many things I will do differently or even just better next year.  I have to admit though, just to have done something feels great.  We have managed to find ourselves as front page news in our local weekly paper. Very kind of them but definitely a surprise to us. Everyone here has been so supportive of us and interested in what we are doing. I know they all have their plates full with their families... but it is amazing to see people take time and offer support. We live in a great community which poured out support in the early days of Ayden Jane's life so it shouldn't surprise me that they are still so supportive, but somehow it does.

I ran in a very special shirt with the names of about 40 kids with pws on it. It was a little idea at first which grew into really cool part, for me at least. I felt like I was running with 40 pairs of angels wings seeing me through to the end. My big kids really got into this idea and are still all excited to wear their shirts too. Mckenna looked at the list of names and asked, "are all those kids just like Ayden Jane?" She was amazed to read the names and feel like maybe Ayden Jane isn't the only one in the world made this way. It was very special to her and she was excited to have a part in the project. Kayla and Mckenna took charge of the t-shirt design.

The only down side for me in the whole thing was when it snowed in Myrtle Beach South Carolina for the first time in 10 years and cancelled the marathon.  Who would have thought.  I still miss the fact that there was no real finish line, but it was a rather unique run as I put in the 26 miles around our community stopping along the way to throw a few snowballs and admire some snowmen. ¨In the end, I was hoping for donations to pile up a bit, but I think my reward already came 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.  I found old relationships were revived as people had a tangible way to help us or at least cheer us on.  New friendships were formed as others took the opportunity to share their struggles with us and wish us well.  We actually have a whole "team" of runners already asking to be a part of team FPWR running for Ayden Jane project in next years marathon.  I surely didn't know that I was signing up to run an annual marathon, but I know I am in for at least one more year.

Janet Gulley

Wife to Gary 
Mom to Kayla 16, Noah 14, Mckenna 8 and Ayden Jane 2 ½ (pws/upd)