On Saturday myself and two Tyler’s Hope board members, John Marti and Patrick Banis built garden boxes at Tyler and Samantha’s school. We worked from 9-2pm and had a blast with a bunch of other kids and some other parents cleaning up an area at the school that needed some help. We planted trees, gardens, built sitting benches, and planted a hedge of bushes. There was no other reason for my friends to help this school out except that they are good friends and good people and they took their Saturday to help people that needed it.
On Sunday, I drove to Orlando to see my nephew and his girlfriend (she acts like my sister and I love it) complete the Disney marathon. They created a website and took donations for Tyler’s Hope. They raised somewhere around $2500 for the foundation and a lot of awareness in the Boston Mass. Area for Dystonia and Tyler’s Hope. Ashley was able to get on the radio and in an article in Boston. Once again, my friend John Marti came to the marathon to support Jordan and Ashley in this incredible accomplishment. We got to the finish line early so we waited to get the photos and cheer them on. John did not complain—out loud. Jordan had a Tyler’s Team jersey on and Ashley had Team Sam. Both wore tylershope.org on the back of their jerseys. I got Goosebumps thinking about what an inspirational accomplishment they achieved as well as why they did it. I thought many times about them running 26.2 miles and how it is ironic that they did this since Tyler and Samantha cannot run. I do not know why but I felt like it was very symbolic. I was very proud of my nephew not only for completing a marathon but for being a great man and doing so many good things with his abilities including finding a good woman that does as well.
Samantha goes for physical therapy tomorrow and to be checked for a cast on her right foot. She has three questions, 1. Can I pick its color? 2. Can my friends sign it?, 3. Can I walk on it? Samantha is also learning to write with her left hand since she is having difficulty with her right hand.
We went to the birthday party of Tyler’s baseball (the Mustangs) coach tonight. This has been a great experience for Tyler and we wish Coach Kevin a happy birthday. Tyler received his new Dynavox. This one is controlled by eye movement, has internet wireless access, and is state of the art. He is excited but it is not programmed yet and he needs to learn how to use it.
We have an IEP meeting this week to discuss getting Samantha and aid at school, make sure we get the correct buses at school when they have a field trip, and make sure that Samantha isn’t overlooked by the school because of Tyler.
Luke is crazy still. We had a neighbor tell us that the kids were playing at his house and all of the kids acted like a little team and looked out for each other. I like that.