The Road Ahead

Last night I watched the Starkweathers receive a new home on Extreme Makeover... It was hard. I cannot yet imagine living with food under lock and key or with watching sweet Ayden Jane feel the pain of hunger... I look at her now and she is so 'normal'. Seriously, you have to spend quite a bit of time with her to even pick up that there is anything off. Eventually, you catch that she is not really talking or clear in her speech and that she eats a bit funny. But seriously at this point that is were the outward differences end. I know that there are differences inside that will show themselves in time. The only real questions are what aspects of PWS will be her challenges and to what degree.

Reading posts from other families in the same boat and meeting a few of them face to face shows me that this road is so different for all of us. Some kids are on the autism spectrum. Some seek food and deal with hunger more severely. Some tend to wander at night. (and by wander I mean all over town if not caught) Some are very bright and some have cognitive delays. Some even go to college. Some struggle with behavioral problems along the OCD line. Some are more hypotonic (low muscle tone). Some struggle from very young with scoliosis and eye problems. Some deal with sleep apnea and daytime sleepiness which disrupts learning during the day. Some are just so low energy. Some wait for years for the gifts of walking and talking. Some struggle with sensory integration. All live life with therapies and Drs. and working extra hard. Most cannot quite handle life independently. What inspires me the most, though, is that the families that I have met have found a way to meet every challenge thrown at them and their children seem to tackle it all daily with an incredible inner strength.

So, to the future I look with a bit of fear. I wonder if I will be up to the challenge. I wonder what challenges I will be up against.

So, to the future I look with a lot of hope. The research is advancing and there is hope that the hunger can be curbed. Ayden Jane has already proven she will take on any challenge and she has already conquered so much. Our 3 other incredible kids have shown they love her to pieces and are willing to work right along side of her. Gary would go to the ends of the earth to supply all we need for her. She has a safe place to be spoiled rotten, yep, grandma and grandpas house. We live in a community that loves and prays for all of us. We have a God that will carry us when we can no longer carry ourselves.

Yep. We can do this thing. In fact, we can beat this thing! I am starting to get excited about next years marathon and fundraising for the Foundation for Prader Willi Research! Go to www.fpwr.org and check out the incredible research going on right now.