Progressive Diary May 20th/2014
By Rick Staab:
The diary was originally written by me to update all of the things that my family deals with in regards to our children's dystonia. Dystonia is a devastating disorder that affects millions of people in ways that most do not understand. There is and continues to be peripheral damage from this awful disorder.
I don't want people to think that we sit around and mope about the struggles my kids go through but instead I am sharing the things that most people can either relate to or want to understand when dealing with any disability in the family or understanding the individuals that deal with dystonia every day.
Last night I had a conversation with Tyler that will shed a small glimmer of light on what he deals with. First he told me how much he misses baseball and his Mustang team. The friendships and camaraderie that he learned and developed with the Mustangs will always be at the top of the list for life lessons. The feelings and support that those kids had is tough for Tyler to get back. This is a very impressive time of his life as a high school teenager and I cannot imagine the desire to capture these relationships and have this support which is very difficult for Tyler not being able to converse easily because of his speech problems.
The second conversation we had last night was regarding his weight and his feeding tube. Tyler has added some weight and is trying very hard to continue to gain weight. He is currently at 99lbs. His goal is 140lbs. He became somewhat emotional when expressing that he really wants the feeding tube removed. I told him I was not sure that could happen but we would work on it. I hope I did not discourage him because he is working hard.
Samantha also has had some recent issues because her implant may need to be redone. She visited the doctor yesterday and it was determined she needs to have another surgery but they are trying to wait until after school gets out. If it continues to get worse then she may need to go in for surgery any day. She is not happy about this and didn’t know what to say.
Here is a recent Facebook post my cousin Dave posted that captures my sentiments about T and Sammy better than I could write it:
"When I tell people about your kids, it usually includes the following.
Tyler is one of the happiest people I have ever met. Against all odds, Tyler wins. All the time. Other people's kids bitch and moan about small obstacles. Meanwhile, Tyler smiles and climbs mountains.
Samantha. When Sam got up out of that chair and completed the 5K, she sealed her destiny as a champion. Life is not going to beat Samantha, Samantha is going to beat life. And, she is now a beautiful young lady with a million dollar smile and a billion dollar attitude.
Luke. When I was in Colorado with Luke, I told him I had $100 I wanted to donate somewhere I could make a difference. Luke pitched me on Tyler's Hope and closed the deal. Luke is crazy, funny, and full of support for his siblings. Luke is part of the answer as to how we cure Dystonia. He is one of the best ambassadors for the cause."