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Saturday, July 18, 2015

Did this just happen? #BlackDayBook and My Reality Check

Anyone else feel like the older you get, the more out of body 'surreal' moments you experience? I had one such experience tonight that still gives me goosebumps.

Let's go back to the beginning - 25 years ago. My BFF from high school was the first of all of us friends to be pregnant. We were all still in college so it was exciting to think we'd all have a little niece or nephew to dote on. (I know we're not related by blood, but you KNEW we were all going to be aunts to this baby.) Then comes the call--I have a beautiful baby boy named Marcus...pause...and he has Down syndrome. In that moment, all I could say was congrats--and it's going to be ok. Even though I didn't really know much about Down syndrome and we all knew many things were not ok.

Fast forward to the elementary years. There were some ups and downs along the way, but the boy who was obsessed with puppets and had every Disney movie memorized was starting to come out of his shell. He would repeat complicated passages from multiple movies and act them out. If you didn't spend much time around him, you probably had no idea what he was saying because it was garbled and almost impossible to understand unless you knew the movie he was parroting.

Then came the teen years where Marcus started creating stories - sometimes quite elaborate ones - where he would weave different favorite characters together into one place and one new story. Then he started assigning his friends and family parts in those crazy shows--that were always going to be musicals. So the @MarcusMusical twitter handle was born.

Marcus today.
Now fast forward to last night. Marcus is 25. Marcus still dreams up musicals and plays. He wrote a One Act play that I got to see performed. And today, for his birthday party, we celebrated the release of Marcus Sikora's first book, Black Day: The Monster Rock Band. And what I saw was an absolutely surreal, out of body moment in my life. My baby boy, the shy one who couldn't, then wouldn't talk, reading his part of the book that he authored. And we saw the preview for the DVD which is coming soon.

Marcus & Mardra Sikora reading the Black Day Book

The kids were enthralled.

Then I got to purchase my own real live copies. And I got them autographed. The boy that we prayed so hard for when he had open heart surgery as a baby, the one we walked the floor with as his first babysitters, the boy who so many people in society believed would never amount to anything is a pubished author signing his autograph. Be sure to head over to and get your copy. 

And a big shout out to Kitchen Sink Cookie Company for making the official monster cookie for Black Day. (They are delicious!)


Full Spectrum Mama said...

one of your very coolest thoughts.

Full Spectrum Mama said...

one of your very coolest thoughts.

Joetta said...

Thank you for this. So many people would rather pretend something doesn't exist if they aren't comfortable with it, it's so great when someone like you, who has walked through the ups and downs of Down Syndrome as a friend, shares her perspective.

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