Last day of 2008. We made some very good progress this year with research and with helping kids, families, and others struggling with their Dystonia care. I have been getting excited because I believe that something huge will happen for us in 2009. Some breakthrough or big stride towards a cure and treatments will happen. Some big celebrity or pharmaceutical company will step up and develop something new. It will begin I believe at the next Summit we hold but hopefully before. With events planned in Chapel Hill, Miami, Vero Beach, and Melbourne, we are getting the word out. People are starting to see that they can make an impact by donating to Tyler's Hope even when times are more difficult and the economy is weak.
We went to North Carolina this past week to see my injured mother and have a little Christmas get away with my brothers and sisters. It was not easy with the passing of my father but we were able to do some good things together. I will need an eighteen wheeler truck to take all of my kids, their clothes, and all of the wheelchairs. For now, Samantha and Tyler have a chair but one day Luke may need one also. Samantha’s chair is manual so we put it in the back of the truck and Tyler's electric chair is on a platform on a hitch. Even stopping for a potty break is an adventure because Samantha cannot walk but Tyler can some. In order to get Samantha's chair out of the back of the truck we have to unhook and lower Tyler's chair so that it can swing out of the way of the tailgate. A new issue arose while we were traveling when we stopped to use the bathroom and fill up with gas. I was pumping gas but Tyler needed to use the bathroom. Tyler is now 11(going on 30). He still needs help when using the bathroom so Michelle cannot take him into the boys room or the women's bathroom. She will either sneak in somewhere when no one else is using it or I need to go. We will have the same issue with Samantha. Each of the kids rotated through the flu this week while we were traveling. It started with Luke before we left then Samantha and then Tyler. It last for about two days. Michelle started to feel poorly on the way home but she seems to be doing much better now.
My prayers are obviously that Luke will escape this crazy disorder but we understand the possibilities that he will also be affected. Luke (aka Batman) will have an easier time because he will just fly everywhere.