I Knew This Day Would Come (for Matt’s 21st Birthday)

Matt’s 21st birthday is January 12.  I wrote the following in the summer of 2014 on a day of his own choosing – his own “coming of age.”  I posted it on Facebook then, but thought on this, his 21st birthday, would be an appropriate way to celebrate his very special day.  He has been talking about this birthday for about three months!

For as long as I can remember, I have put Matt to bed.  Leann would gladly do this I know.  It has just, for some reason, become a special time for me and Matt and so Matt protects it from outsiders (including MOM).

The ritual goes like this: Matt lays down in his bed, I brush his teeth and then cover him up and lay beside him and tell him a story: “Once upon a time there was a SWEEET little boy named Matt Steinhauer – He was the SWEEETEST Little boy! He had a Mom and a dad, and a sister named Kerra and a sister named Lindsay. EVERYBODY loved him! Mom loved him, Dad loved him, Kerra loved him, Lindsay loved him, EVERYBODY loved him.

“One day, Matt woke up – it was a Tuesday…..”

The story has always simply been a recap of what I know about what he did that day. On June 22nd 2014, I was waiting on Matt to get in his bed.  So I knew this day would come…when Matt would, in his self-awareness, “grow up.” With about an hour and a half left on the day of the Summer Solstice, Matt walked into his room at bedtime and said: “I’m not Little Matt anymore.”

Having spent the previous couple of hours looking at pictures of Lindsay across the years, as I constructed the video for her wedding reception that would happen in a few days, I was already what one might call “on the emotional edge.”

He said again, “I’m a guy, I’m not Little Matt.” I’m “tall Matt.” I confirmed that he was indeed getting tall, and that we really called him “Little Matt” to help people tell the two of us apart. But really it was that I am “Old Matt” and he is “Young Matt” – would that be okay?

matt and sisters

This is Matt with his sisters, Kerra and Lindsay. If you look closely you can see him standing on his tip-toes because he is “big!”

“Yes!” was his immediate reply. Holding my breath I asked him, “Now that you are “young Matt” and not “little Matt,” do you still want me to tell you a story?

“Yes!”

“All shall be well, and all shall be well, and all manner of things shall be well.” Julian of Norwich

 

3/21 Celebration of My Wise Son

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

Matt as "Gaston" from Disney's "Beauty and the Beast" - one of his favorite characters to portray.

Matt as “Gaston” from Disney’s “Beauty and the Beast” – one of his favorite characters to portray.

are Spiderman!” 

“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. 

 

L to R: Jonatha Brooke, Keb' Mo', Mike Reid, Beth Nielsen Chapman

L to R: Jonatha Brooke, Keb’ Mo’, Mike Reid, Beth Nielsen Chapman

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!