When you are baptized into the world of Down syndrome you go through a transformation process, a process that cannot be resisted, reversed, or refuted. The fact is, you see the world differently and it feels like the world looks at you differently. Sometimes I wonder what people think when they see a family that has a child with Down syndrome. I try to remember what it was like for me 4 years ago but that seems like a lifetime ago.
The daily grind
I really enjoy the HBO series Band of Brothers and was excited when HBO created the series called the Pacific which featured the Pacific version of World War II. I have watched both series’ multiple times but most recently it was the Pacific. While watching an episode a couple of the Marines were talking about the recent lack of news coverage for the war. They concluded that the general public was not interested in the “grind” of war but only the exciting events. The Marines then emphasized that even when things are not really bad there is a daily stress that must be dealt with.
I felt like that there was a level at which I could relate to what these brave men were talking about. Of course, I have never needed to fight for my life or the life of the person next to me but I sure could understand what they meant when they talked about the daily grind versus the exciting events. People love to hear about the big events such as I.E.P. meetings, medical issues, etc. There is a misconception that if Treyton is not undergoing some type of surgery that we live a typical life and everything is candy coated like the rest of the world. Wow, if you think that is the truth you are a long way from sinking my battleship!
As we grind our way through each day it is very easy to let things wear you down and with that fatigue it is easy for your spirit to fall as well. It is easy to feel alone during a time like that. Sometimes you are stuck and you just need to fight through it. Other times it does help to remind yourself that you are not alone; there are thousands of people walking a similar path as you. Most of your fellow sojourners are very similar to you but there are also those that many would be surprised to find on this journey.
-Eunice Kennedy Shriver
As the parent of a son diagnosed with Trisomy 21 I have been granted membership into a not-so-exclusive club. This is a club I never thought I would be a part of and it is also one that I did not choose to join; this club chooses you. The club is not only for those impacted by Down syndrome, it is for anyone that has seen how real and indiscriminate disability is.
Disability can affect anyone regardless of age, education, or economics. Those of us in the club are acutely aware of how open the membership is to people from all walks of life. We are also aware that those of you not in this club do not realize how close you are to joining us. The reality is that no one plans on it and there is not anything you can do to prevent it. It is all too random.
Think about it, 1 out of every 691 babies born in the United States has Down syndrome. Based on current birth rates, that means that each year 400,000 babies are born with the extra copy of the 21st chromosome. Eighty percent or 320,000 of those babies born with Down syndrome are born to mothers under the age of 35. And that is just Down syndrome.
We all know that our culture puts a lot of emphasis on “fame.” Celebrities impact our purchases, eating habits, and entertainment choices among other things. It did not take long for my wife and I to start noticing celebrities impacted by Down syndrome. Actors Jaime Foxx and John C. McGinley are on the list as well as baseball player Albert Pujols and politician Sarah Palin.
I am thankful for the celebrities that choose to use their status to further the cause of those with disabilities. When thinking about the impact these generous individuals have had on my life and the life of my son I must also express my gratitude for Eunice Kennedy Shriver as well as the entire Kennedy family. It is because of Mrs. Shriver and an article she wrote in the Saturday Evening Post on September 22 of 1962 that society has advanced as far as it has with the acceptance of individuals with cognitive disabilities.
Before naming the article I would like to point out that it was a different world for those with cognitive disabilities as it was for even for those of African-American heritage. The language we use to talk about people of different races has advanced as has the language we use to refer to people with cognitive disabilities such as Down syndrome. The name of the article is “Hope for Retarded Children” and can be credited with creating the momentum that has helped to created a better world for those individuals.
Take a few minutes to read the article, just click on the image of the magazine cover and you will be directed to the original article. The Kennedy family, despite their societal status, accepted Rosemary as she was and made sure to include her in all aspects of life, this was revolutionary for the day and age. Instead of being embarrassed about having a family member with a cognitive disability, this family chose to band together and use their resources to create a better world for others like their Rosemary. This is what Mrs. Shriver writes about the change they were working to create -
Twenty years ago, when my sister entered an institution, it was most unusual for anyone to discuss this problem in terms of hope. But the wary fatalism of those days is no longer justified. The years of indifference and neglect are drawing to a close and the years of research and experiment, faithful study and sustained advance are upon us.
-Eunice Kennedy Shriver
I am thankful that people like Eunice Kennedy Shriver and her family had the to courage to use what God had given them to create a better world for people like my Treyton.