We were able to take all three kids with us this past weekend to Boston and Newport RI.
As a reminder for those who do not have handicapped children or are newly diagnosed, airports and airplanes are not the easiest things to navigate with Dystonia. As always Saint Michelle called ahead and got some wheelchairs reserved for the airports and that helps. You cannot use the escalators or stairs with wheelchairs. Our layover in Atlanta was 35 minutes and we had to travel between terminals so waiting on the elevators is frustrating. We did make our connecting flight though. Both Tyler and Samantha have adjusted to the posturing that dystonia makes them take so they were able to comfortably fly to our destination. The last trip we were on, sitting still in the seats was an issue because of all of the dystonic movements. Because of the extra luggage, and walker (we left one of the wheelchairs at home) we needed to rent an SUV to carry everyone around. Samantha started with a head cold and came home with what is now bronchitis.
We arrived in Boston Friday night and went to our hotel in Cambridge where we caught up with my older sister and the kid’s cousin, Nick. We had dinner together then went to sleep. The next day, Saint Michelle and Samantha drove over to Newport with my sister Barb while Tyler, Luke, Nick and I took the famous Duck tour with my cousin Dave and Lisa who had flown in from Minneapolis. The Duck tour is awesome and I highly recommend it. We ran out of time in Boston so we were not able to see Harvard Square or Fenway Park. We will be back. Tyler did get to see Mass General (where they found the DYT1 gene for Dystonia and where we have funded a lot of research for the cure) as well as M.I.T. That area is full of the brightest minds on the planet.
We left for Newport after the duck tour ended. For the sake of typing all of the details and making the story too long to read, I will say that the Oceancliff Resort is beautiful. The wedding was unbelievable. A lot of my family was able to make it including cousins and aunt and uncle. The kids were each in the wedding and looked great in their tuxes and Sammy in her dress.
Jordan and Ashley are two of the greatest people you could ever meet and I was very excited about their wedding day. They have been instrumental in our battle against dystonia and raising funds/awareness for the cause. This weekend was no exception. First they asked everyone at the dinner tables to take a dollar out and one person to take a larger dollar out. The person at the table with the largest dollar was the banker and kept all of the money from the table. They then played music and passed the bills around until the music stopped and that person was asked to take all of the money from the table over to Tyler as a donation to Tyler's Hope. If that wasn't enough, they purchased 200 t shirts with Tyler's Hope and Dystonia Sucks! on them and gave the to all of the guests. All of the guests put the t shirts on and wore them while dancing and celebrating. I promise you that as I type this I am teary eyed and proud of them thinking about this cause on a day when we were celebrating their marriage. Good people!