Saturday, March 21, 2015, marks the 10th anniversary of “World Down Syndrome Day.” This day was chosen because of the symbolism of the numeric “month/day” as an accurate description of the genetic anomaly of “Trisomy 21” – the occurrence of three chromosomes on what should be the twenty first “pair” of chromosomes. So this extra biochemical matter is the cause of the 16 syndromes that identify Down syndrome.
There is a billboard along my regular commute to the church I serve – a paid advertisement for the local hospital -with a picture of a boy dressed in his superhero costume and it says: “If you try to fly and can’t, our Emergency Room is always open and waiting to help!”
What little boy do you know that on Halloween, dressed in the costume of their favorite superhero, doesn’t literally turn into that character in their own mind? Even though Matt, who was born with Down syndrome, is 20 years old, he still loves to dress up for Halloween (and especially when they have dress-up days in school!).
A couple years ago his costume was “Spiderman.” When we got him dressed in full regalia I exclaimed, “Matt! you
“No dad. I’m just Matt.
“You don’t want to be Spiderman?”
“No, I’m Matt. I just want to be Matt!”
A few weeks ago I spent a fair amount of money, and three days of my life, to join 19 other “typically developing” adults in a songwriting and creativity workshop in Nashville. Beth Nielsen Chapman, a gifted singer, songwriter, and teacher, was joined by former All-American and All-Pro football player turned legendary songwriter, Mike Reid, to teach us the most important aspects of the creative arts. On the last day of the workshop we were joined by singer, songwriter, playwright Jonatha Brooke (who added her perspective of creativity), and legendary Americana Blues artist, Keb’ Mo’, who only came to sing, but he also took a few minutes to encourage us in the writing and creative process.
“Overwhelming” doesn’t begin to define the creative energy that gathered in a relatively small room that day. If you watch the ABC TV hit, “Nashville,” you have seen the famous “Bluebird Cafe” and know it is a place where some amazingly gifted singer/songwriters show up in a small venue to share their songs and stories. Our small group was treated to a concert by these four legends, any of whom could sell out the Bluebird just about any day of the year.
One of the most profound pieces of advice that was given by each of these four successful creative people was, “be yourself.” They may have each described it in a different way, but when it came right down to it, they were letting us in on this master craftsman’s trade secret: “You are the only person with your story. Tell that story.”
“I’m just Matt!” Matt already grasped this secret of creative geniuses when he was just a boy. He has taught me many things that have been important and helpful for me to know in our relatively few years together.
I have living evidence that these beautiful people who are born with an extra chromosome have “extra” other things as well. They have an extra sense of the way things really are. They have an extra ability to speak the honest truth. They have extra vision to see things that “typically developing” people do not see. They have extra compassion and love and an extra willingness to share it.
On this 21st day of March, “3/21” — World Down Syndrome Day, I celebrate, and honor, and thank God for my son Matt. Maybe instead of wasting our time figuring out how to stop Trisomy 21 from occurring, humanity would be better served to figure a way to genetically modify all humans’ 21st pair of chromosomes, and add a little “extra” – so that we might experience and share the extra stuff that comes so naturally to Matt and all the other beautiful Down syndrome people in the world.
“Just Matt” is what I want to be too. Thank you my extra special son!