This is the week.
Well, this week has finally arrived; on Friday we are headed to New York City to participate in the 2013 Buddy Walk and see Treyton’s picture on the jumbo screen in Times Square. As I have said before, this is a nice opportunity for us to celebrate one aspect of Treyton that makes him unique. Down syndrome is a part of our life that often requires a lot of our focus but is rarely celebrated. This weekend will be different.
On your mark, get set, ADVOCATE!
I have had two unique opportunities this week to share my general story about Down syndrome as well as the specific story of going to NYC. The first opportunity came on Monday when I was asked to do a follow-up radio interview on 1340 AM New/Talk WJRW to give an update on our planning for New York as well as some general conversation about Down syndrome. (I hope to get a recording of this second interview to share but as of now I don’t have it). It was a lot of fun!
Yesterday I was invited to a lunch meeting with the Kenowa AMBUCS. Aside from having a great meal and getting to meet some new people I was given the chance to thank those responsible for providing Treyton with an AmTryke. I was provided a few minutes to tell my story and how the Amtryke was helping Treyton. I thought I might have the opportunity to speak but was not sure so I did not have anything prepared. I don’t mind speaking but when I don’t prepare ahead of time I risk rambling and speaking for too long. I think did an alright job of being thorough yet concise.
Now I just found out I am going to be interviewed on live Television tomorrow. I don’t want you to think I am complaining because I am not; I am really excited about this opportunity. The interview will be on our local NBC affiliate Wood TV around 5:20 PM on Thursday the 19th. I hope to be able to post it on the blog later for those that are not able to see it. That is as long as I don’t really screw up! Anyway I was told the interview would cover our trip to New York for the Buddy Walk as well as how we advocate for Treyton and others with Down syndrome.
I am so thankful for these opportunities, yet, I do feel a bit of pressure. I don’t want to waste them.
The words of another father.
If you have not already read George Estreich’s book entitled The Shape of the Eye: A Memoir you should. I don’t want to say too much about the book now but I don’t plan on doing a review of it soon. Estreich does a great job of providing so different perspectives or in some cases familiar perspectives but in an easy to understand manner. It was something the author said in his book that popped into my head regarding these opportunities. Estreich said,
When Laura was first diagnosed, I thought there was a single thing called Down syndrome, and that I could find out what it was. I assumed that once I possessed this information, its relation to Laura would be clear. . . . .Two years later, the general descriptions and the particular child seemed utterly distinct.
Estreich, George (2013-04-18). The Shape of the Eye: A Memoir (pp. 175-176). Penguin Group US. Kindle Edition.
I related to these words, I lived them. Then I realized that is what I wanted to do when I was given the chance. I want to help others understand this transition; I don’t think it is possible to fully understand unless you live it but I am going to do my best anyway.
I want people to realize that whatever picture they have of Down syndrome is wrong. It is wrong because they don’t know Treyton. If you want to understand Down syndrome you need to understand the individual with the diagnosis. Just like you cannot assume people without Down syndrome are all the same you can’t assume that having the extra-chromosome erases individuality. That is my focus.