Hello Friends, Here we go!
A Gift From the Universe to Change the World
Birth stories that are combined with diagnosis stories are almost always a mix of fear, motivation, maybe panic, and most often a deep well of newly discovered, unconditional love. The feeling, when I held my newborn son, that the universe was, in fact, “resting in my arms.”
It occurs to me, this same emotional spectrum, to a lesser extent, is also common when preparing a public speech or performance. Most artists or speakers begin with an underlying love or passion for the subject. Then the fear, motivation, sometimes panic, and finally, sensing the universe whispering…“You got this.”
You Never Know…
Every reading and book event is unique. You never know who or how many people will show up. It’s the nature of the book-promoting-beast. In this case, folks came from miles around, ready for Marcus and his book. The families lined up before the showing of the animated short to buy a book with DVD and get his autograph.
The Autograph Process Can Be Long
When Marcus Sikora gives out autographs, the lines run long.
Two reasons, 1) People like autographs from an author they have met in real life. 2) It takes a long time for Marcus to write out each requested name.
The way the signing process goes is this: – – – Read More.
Carlos Gonzalez Paired Up with Marcus Sikora for a Home-Run with the Global Down Syndrome Foundation
The night game was a perfect cap to a big day that was, for me, full of reflection. I thought back to twenty-six years ago when, at the time of his birth, Marcus was diagnosed with Down syndrome. From that moment on, there have been those who proclaim labels and then paste them upon him. Labels that, at times, covered the best parts of him. There were, and are, people who only see those labels that put him in a box. A box where he “belongs” in order to fit into the space they want to allot him. A box to keep chances out. A box to contain.
The thing about Marcus is: he doesn’t fit into their box.
Whether blog, social media, short form, long form, articles, fiction or non-fiction, our combined stories online are documenting history in real time by more people than have ever done in the history of mankind. This combination and diversity of voices can, and I hope will, create social awareness and positive change towards more accepting, open, and accommodating societies at an exponentially increased rate because of the sheer humanity of these connections. Connections promote organic and lasting change
There are many ways and forums that these stories are shared. The first, easiest, and most obvious is Social Media. There are many fears that drive a decision to not do this – and these are real and should be considered.”
Read the whole article here: http://www.huffingtonpost.com/mardra-sikora/when-it-comes-to-sharing-_b_9853832.html
As only Marcus can, he taught the kids (and me) while we toured in October.
This has been my dilemma as Marcus and I have met each new group. Should we talk about Down syndrome? And to what extent? It is, after all, Down Syndrome Awareness Month, and Marcus does happen to have Down syndrome. Read More:
In August of 2015, Chris Burke turned 50. I had to tell him, and his family, what his life’s work has meant to me and so many others:
Dear Mr. Chris Burke,
My son was born in 1990, a time when the TV show Life Goes On aired on ABC weekly. This show, which featured a main character who happened to have Down syndrome, made its place in history, while you personally demonstrated a life of ambition, of possibility, and of self.
Your ambition validated my own hopes for my son, who also has Down syndrome. Your work rose above the clamor of the naysayers. If/when limits were imposed upon my son’s dreams, I looked to you, and your family, and refused to accept the boundaries pushed upon him.
Now, your 50th birthday is around the corner and, well, Happy Birthday! Also, congratulations on 21 years with the NDSS (National Down Syndrome Society). I’ve heard you’re retiring and although we’ve never met, I’d like to take this moment to thank you for teaching the world, the community, and me: Read More
When my co-worker’s daughter was diagnosed with cancer, the whispered phrase that followed her from every room was: “I could never…”
Two years later, one of the whisperers 3-year-old daughter also developed cancer.
I theorize that the reason we say “I could never…” is that we are trying to tell the powers that be:
“Don’t even try it,
because if you do,
And you don’t want that, do you?
On a recent road-trip to central Nebraska, my son Marcus leaned back and sighed, “This is the good life.” That particular weekend there was much ado about Nebraska’s slogan: “The Good Life.” So I smiled in agreement while my mind wandered over the parallel metaphor to our world.
Maybe you’ve experienced this too, defending the place you call home. Do you get tired of explaining what exactly is good about “the good life” to those who say they could never…? To those who are filled with ill-conceived notions and stereotypes about our day-to-day? What beauties there are to see and experience?
Like many kids, I knew I’d leave Nebraska when I grew up. But the days went by and, though there were other opportunities along the way, I chose to stay. And sometimes there were circumstances that chose me instead. Which brings me to the parallel metaphor — life with my son, Marcus.
Read More Here.
Since Ethan Saylor, a young man with Down syndrome, died nearly two years ago at the hands of three off-duty police officers, we have lost much as a community, as parents and caregivers, and as a nation.
On January 12th, 2013, Saylor sat in a movie theater not far from his home, wanting to watch Zero Dark Thirty a second time; however, as he hadn’t paid for a second movie ticket, the management called security. Against the advice of Saylor’s caregiver, the three men moonlighting as mall security pulled the young man from his seat. Witnesses reported seeing Saylor handcuffed as one of the security team held a knee in his back. They heard his last words, “Mommy, it hurts,” just before he became unresponsive.
Saylor’s death was ruled a homicide. The forensic reports revealed that “Saylor had bruises and abrasions on his face and body. And another injury: a fracture to cartilage in Saylor’s throat.” The cause of death was asphyxiation. The sheriff’s office, where all three members of the movie theater’s security team were employed, handled the internal investigation, which concluded a few months later that “no further investigation was necessary.” The men responsible faced no charges or disciplinary action.
Saylor’s unnecessary death shook us deeply, yet our faith held that the individuals responsible would be held accountable for what was at best excessive force and, at worst, a hate crime. This expectation crumbled as we learned that every witness account was taken in the presence of one or more of the officers involved. Read More.
This season as I mulled over each habit or practice I should change, improve, or drop, I also gave thought to the wisdom my son Marcus shared with me last fall while we sat at our favorite coffee shop. We’re regulars at one particular Scooters where they are nice to us. The general public, on occasion, puts me on edge. You see, I’m a bit paranoid and particularly attentive to how folks look at and react to us because Marcus, my adult son, has Down syndrome, and the patrons and employees at this Scooters tend to acknowledge Marcus but not bristle, are nice but not patronizing, a surprisingly tricky balance for some.
That month a website called The Road We’ve Shared was preparing to “spotlight” Marcus. So while we sipped our hot drinks, I asked him a few questions, finding out some of his favorite things to include in the note.
I learned that Marcus’ favorite Muppet is Walter (the new guy). His favorite pop song is “On Top of the World” by Imagine Dragons, and his favorite food is peanut butter and jelly.
Dear Mothers of Color and Mothers of Children of Color,
To start, I am a Midwestern white woman and I do not claim to know your story. Truly, I know this among so much else I do not know.
Whether you are my sister, my friend or a stranger, does it help to know I also cried when I read the transcription? That I “shared” Eric Garner’s last words because, though hard to see, they must be seen, and does it help to know I feel powerless? Does it help to know I reeled from the reality of the system… again?
Does it help to know this is not the first time I have shed tears at injustice? That I have seen and fought, too, for the value of a life of one who looked like someone I love? Does it help to know that I hope the battle cry you take to the streets makes change? That I want change, too. That I believe that “the streets” will be safe only when everyone is safe? Read more.
After a screening of the live action short film Menschen, Sarah Lotfi was approached by a young woman who exclaimed, “That’s me!”
The young woman with Down syndrome referred to her resemblance to the costar of the film, Connor Long. Seeing someone who looked a little bit like herself on the movie screen was an exciting and moving moment for her, and an enlightening moment for Lotfi. “It moved me as a filmmaker,” said the director.
It does mean something. Witnessing people who look like us and those we love in the media and culture impact our daily lives with confidence and hope. 24 years ago when I told friends and family that my son was born with Down syndrome, I was comforted by the phrase, “Like Corky, from Life Goes On.” Read on here.
What One Young Man with Down Syndrome Wants You to Know
The day I struggled and struggled with a reply to the Daily Mail’s latest *%64@!, Marcus gave me the answer. Read the blog here.
According to Jenkins, Best to Keep a Person With Down Syndrome at Home
Last year in January a man who looked a little like my son died at the hands of three police officers moonlighting as security guards. Those of us in the community, people who love someone with similar features, rose and reacted. Some raged. Some looked for comfort. Some demanded recourse. We all wept.
The wounds came open again when a few days ago Gary Jenkins, the brother of the sheriff of Frederick County Chuck Jenkins, publicly blamed Patti Saylor for her son’s death because it was she who allowed Ethan to be in the community. His letter to the Editor of the Frederick News Post stated that, “She should have known better to send him out in public.” Apparently, Jenkins believes that Patti Saylor should have somehow considered the possibility that her son’s trip to a movie theater would lead to the fatal circumstance of three off-duty officers forcibly bringing her adult son with Down syndrome to the ground, resulting in a crushed larynx, asphyxiation, and the devastating conclusion: homicide.
Jenkins continued by questioning Patti Saylor’s decision to not just “Keep him home.” His letter speaks loud and clear to the segregation mentality that families face at every stage of their child’s life. Really, every day.
My Mother, Tennessee Williams And Alzheimer’s
My mother is a character from a Tennessee Williams play… but without a Southern accent. I am her second child and was born when she was 16 years old. Her childhood was cut short and never spoken of in a way that imparted a sense of safety or innocence. Each man she ran away with she hoped would rescue her from the last. She gave up every child she bore to some degree. And in each tragedy she was the faultless victim, bearing the bruises without bearing the blame.
She’s also hilarious. No matter how many times she repeated a joke, she could make it look like she just thought of it. As a bartender or waitress, she told countless anecdotes with ease and entertained like she was under a spotlight rather than serving up the daily special. She’d spontaneously break into song and dance. “I’m not a ham,” she’d say, “A ham can be cured.”
I believe my mother’s highest ambition has always been to be liked. Hers has been a life of passing laughter and passing friends.
That question has been posed to you for the last 20 years. And…
There have been a few days when I’ve leaned back against the wall and thought, “Oh… this is the hard part. This is what I was afraid of.”
When they rolled my son down that white hall into heart surgery, I nearly imploded from the sheer fear of losing…
The first thing you should know is this: My son Marcus is an adult with Down syndrome and he lives with us, not because he has to, but because we want to live together. Like millions, actually well over six million, families with adult children who live “at home” in…