We took the kids to a bed and breakfast at Amelia Island this past weekend. It was very refreshing to get away from every day life with the family. The Inn was very cozy (Ash street Inn) in the historic area of Amelia Island.
I write this diary to share with people the daily struggles Tyler and Samantha have with their Dystonia and also how it affects the family. Hopefully this helps others deal with their situations and better understand the disease. I had one of the best times in a very long time just because it allowed me to do things without the daily pressures at home. It was also a reminder of the difficulties that even we forget we deal with. We were searching for things to do with two handicapped children. We went to the beach the first day. Tyler is more mobile now and able to walk where Samantha cannot walk unless it is for short distances and with our assistance. Sammy is not a small girl so I cannot just pick her up and carry her like logs for long distances. I don't show her when it is difficult because she would feel like a burden and that is not the case. It is difficult to carry her in Sand from the car to the beach though. Tyler is able to get around pretty good and Luke is always a maniac. People stare at us because of their disabilities. I don't care about people staring as much as I wonder how much my kids care. They seem pretty immune to it but I credit this to their incredibly positive attitudes.
We went into town and went to dinner on the water that night. The restaurant was not handicap accessible, kind of like the beach. Dinner was great even if Luke talking to everyone around us.
The next day we decided to try to go to the putt putt place. It turns out that it was three stories high with no handicap accessibility. We played the first nine holes because they were down near the bottom but Samantha was frustrated because she could not keep up and both she and Tyler could not hit the ball where they wanted to because of their Dystonia. They enjoyed trying.
We hid Easter eggs for them to hunt but it was very difficult for Samantha since she can't walk. All of our kids are very competitive (must get that from Momma) so it was frustrating for Samantha.
Luke helped with the breakfast dishes at the Inn. He helped wash dishes and clear the tables. He really liked doing this and Jill (The Inn Keeper) was very kind. He received his daily pay of a homemade chocolate chip cookie.
Tyler went three days without his shakes (necessary to keep his weight up) because we forgot them. We packed as lightly as we could but had a large SUV full with wheelchairs and clothes. In order for Tyler to get his shakes he uses a feeding pump, stand, bags, and shakes. This adds a lot to wherever you may travel. We had to take the truck wherever we needed to go to transport the kids and wheelchair. Most people rode bicycles around.
I apologize for the long update but I have not written for a bit and I thought this weekend was a good reflection of some of the struggles we go through with Dystonia.
This week has been spectacular for Dystonia awareness with Michael J Fox, Rogers Hartmann, and Sam getting on Oprah, Today, and Dateline all for Dystonia awareness. Tyler's Hope has an event in Chapel Hill NC on Thursday.
