Mardra Sikora

@mardra-sikora | contributor
Mardra Sikora is an author, speaker, & advocate who believes in the power of words and uses both fiction and non-fiction to advocate for and with her adult son, Marcus
Mardra Sikora

Models With Down Syndrome Shine at Celebrity Filled Event

Several celebrities walked the red carpet and the runway in the 10th anniversary “Be Beautiful, Be Yourself” Fashion Show Saturday, Oct 20. The crowd cheered and mingled with the likes of Colin Farrell, Jeremy Renner, Heather Graham and more! What makes this event especially impactful is the transformation of star-power when the models take to the runway. This photo is a great example. I mean come on! That guy in the background, he’s cool and famous and all (award-winning actor John C. McGinley) but I think we can all agree that Kate Winfield and Claire Hepburn are the stars on that stage. The two renowned actors in this photo are Heather Graham and Zack Gottsagen. Heather was lovely, of course, while Zack owned the runway. Earlier in the evening, Zack Gottsagen accepted the Quincy Jones Exceptional Advocacy Award with both gratitude and responsibility. “Changing the worldview of people with Down syndrome” is a challenge he takes on with hard-working integrity and enthusiasm. Jeremy Renner told reporters ahead of the event, he came ready to learn. He shared the stage with Walt Snodgrass and Charlotte Fonfara LaRose. They rocked! Cora Jane Thompson and Ty Dillon strutted and danced to the delight of the crowd. Who’s that other guy? Oh, yeah, Denver Bronco Justin Simmons. Just kidding, Justin, you look great! I think we can all see from that smile, he gets it. This night brings out the shine in everyone.   Brandon McManus escorted Marcus Sikora and the incomparable Destiny Weldon on the runway. Marcus wooed the crowd with one of his signature hat moves. Collin Farrell spoke on the red carpet and at the platform about the importance of inclusion. Inclusion meaning more than just feeling a part of something, but also being provided with the opportunity to reach one’s potential. He shared an impassioned vision for everyone differently-abled while he accepted a Quincy Jones Exceptional Advocacy Award. This event raised 2.4 million dollars for Global Down Syndrome Foundation’s ambitious medical research, education, and advocacy programs. Thank you to all of the stars who came out. For more information about the important work that Global and its affiliates are doing to significantly improve the lives of people with Down syndrome, check out the Global Down Syndrome Foundation website here.

Mardra Sikora

Jamie Brewer on Broadway: Brutal and Beautiful

Currently, eight shows a week, Broadway audiences are listening with rapt attention to a person with Down syndrome. Can you even…? Theater creates space where audiences can relate to people and circumstances far outside of their own day-to-day experience. Theater can open our minds to exploring experiences that are not our own. Sometimes, theater can also bring a sense of belonging to people who feel like outsiders, different or out of sync with what is commonly considered “normal.” My son, Marcus, who also has Down syndrome, and I are avid theater fans. So, when we saw that Jamie Brewer (“American Horror Story”) would be playing the lead role of Amy in, “Amy and the Orphans,” well, travel plans were made. The first thing he said after the curtain call was: “Wow.” The first thing I said was: “Brutal.” The woman who sat in front of us turned around, gave me one look and said, “That was hard for you.” I knew better than to wear mascara that day. Still, I couldn’t hide my emotional reaction. She was right. It was hard. And also, beautiful. Hard, because of the history in the story. Amy is a woman with Down syndrome who was, as her on-stage sister said, “born in a different time.” Beautiful, because Jamie Brewer played this powerful role on a Broadway stage. Brutal because this “different time” was not so long ago. Not so distant. Similar stories impact people I love with Down syndrome, even today. “Amy and the Orphans” merchandise features the line, “I speak my Truth.” The line appears early in the show and continues throughout as one of the central themes. However, the truth is malleable. What is “fact” to one may not be fact to another. Until it is. In this play, a family comes together looking for solace and, in the process, is forced to face their truths. The truths they chose (and choose) to believe, truths shattered and truths learned anew. The drama is scattered with jokes and breaks between intense moments, because anyone with a family knows, sometimes you have to laugh at the absurdities in our lives. Our hero, Amy, has the opportunity to share her truths, too. I suspect, for many typical theater goers, this is the first time they have ever heard a person with Down syndrome speak these truths. Human truths about relationships, loneliness, fear, making decisions for oneself, and more… by the end, the audience is captivated by a powerful monologue full of passion and conviction. During the production, while other audience members laughed with the siblings and the well-placed comedic beats, I took those moments to catch my breath. There was a weight upon my chest, heavy with the real life concerns I have for my son, his future and how our society perceives the value of his life. And then, dear readers, there are the reviews. Broadway reviewers are encouraging audiences to see this show. Not simply “our community,” not only “disability” — fellow humans should see this show. Audiences laugh when it’s time to laugh and, if they’re anything like me, cry here and there, too. Neurotypical theatergoers are given characters with whom they can relate and given a chance to reflect, as well. I have all the feels about this performance, about this story, about this Broadway experience. Today, though, above all, I delight in knowing that hundreds of people, every day but Monday, are hearing a person with Down syndrome. Go. Now. And see what she has to say. Images used with permission by the PR department of the Roundabout Theatre

Mardra Sikora

To My Adult Son With Down Syndrome About Our Amazing Journey

Sometimes, the dreaming, the planning and the anticipation that build up a destination are all part of the excitement. Other journeys take unexpected turns, are filled with surprising delights, and have anxious moments. They lead us out of our comfort zones — seeing, touching and exploring worlds new to us. Our journey, so far, has been both. You are now 27, and I feel as blessed as ever to be on this amazing adventure with you. The day you were born, I held you in my arms and our path lay before us, unexpected and unclear. Of course, I didn’t know how far you would or could go. I doubted myself as the guide for this expedition, not realizing yet you would be taking that lead role. You were born to a young, single mother in a small Midwest town. We were not alone, good friends near and family not too far. But many times, we felt alone. In those early days, I held you close. I tried to will my own strength to your tiny, beating heart that needed to be mended. You were such a smiling baby, your eyes sparkled, your skin was porcelain. After your heart was mended, color came into your cheeks. You scooted, then crawled, then walked. In preschool, you signed, babbled and played with children your age. You hugged them. They embraced you. When it came time for kindergarten, the roadblocks began. You were locked out of experiencing school with your peers. We were led to dead ends we did not accept. Instead, we chose another path, a school where you would be pushed to learn and accepted as an individual. We needed a place where you were both safe and celebrated. You didn’t love school. Not everyone does. You liked music class, though. Every year, in preparation for the Christmas program, you practiced the songs, day and night, in the car and in your room. You sang and we sang along. Then, when the program day came, you stood among the other children and… not a peep. Sometimes you moved your lips; sometimes not even that. We soon joked, “Too many people on stage. Just give him the mic and he’ll take the solo!” I’m not sure if you ever showed your teachers your performing chops. I’m told you were quiet and cooperative at school. You often sat alone at lunch. You struggled with basic academic skills and your attention was short. Still, you learned. And I worked. Then you grew up while I wasn’t looking. But you were looking, always watching. You watch people. You see the adventures all around you. You see conflict, humor, joys, fears and truth. You are a master at seeing the truth and boiling it down to its essence. You began sharing your ideas and stories, complete with comedic timing, running gags and the hero’s arch. Together we built your first children’s book. Your story and plot twists, my fluffy words and formatting. We chose an illustrator. He listened and built from your vision. He brought his own talent and experience to the trip, and the adventure became colorful and alive. The day the books arrived, you rambled to me in the car about the time your uncle picked you up from school and you went to play video games together. You spoke of the day your grandmother’s dog died. Your eyes glistened when we delivered books to the book store. I witnessed your life flashing before your eyes, everything in your life — good and bad, big and small — culminated at that moment. You called the feeling “sad excited.” The birth of your book to the world. It does that. Sometimes I feel like I know very little about what you expect out of life. Except you always need to know what is on the list. Also, this big quest: you fully expect to produce, “Marcus the Musical” and win a Tony Award. There are times when people wink at me while you speak of your writing, your books, your speeches and your interviews with people around the world. They do not immediately accept the reality of all of these truths from your life, your progress from unexpected to unlimited. Recently we spoke at the United Nations‘ building, you and I, and there wasn’t time to say all we wanted to say. We mentioned that always learning, dreaming, panicking, being creative, and being silly are part of our life, part of the human journey. In preparing to speak at the United Nations, you wrote your introduction and conclusion. Then we added your cues throughout our message. A message of voice. You appreciated having the microphone, speaking solo. You said, “I want to help people.” I asked, “Do people help you?” You answered, “Yes. Everyone needs help.” I choked up a little there, as I repeated, “Everyone needs help.” Some men and women on our combined journey feel that helping others reach their potential, helping other humans with basic human needs, is too far out of their way. There is no room on their path, they think ability and disability are parallel roads. This idea is hard for me to reconcile. None of us really can make the whole trek alone. Disability is part of the human adventure; it doesn’t only come at crossroads, but merges into our experiences throughout our lives. I knew shortly after your birth our path was to go unmapped in many ways. There have been anxious moments, there have been difficult and terrifying bumps along the way, and the mountain we climb is, even still, shrouded in a haze that keeps our plans to one step at a time. Oh, but the heights you have scaled! Your book entertains and teaches. Navigating your ambitions is a challenge and a pleasure, a trek worth taking together. What’s next? Maybe a movie part, creating your next book and your musical, of course. Also, there are red carpet dates on your itinerary. For real. Look at where you began. A tiny, innocent babe, like the hundreds of thousands born each day. Yet also different…and amazing. I am proud of who you are. I love your ambition is not based on expectation and your adventure is as unique as your soul. I am proud to be on this journey with you. You teach me. You guide me. You drive me. You help me. And I, I hold your hand whenever you let me. I marvel at each next step. I beg the universe to keep the path open for many more. I love that I am your mother. A version of this post appeared on “Our Amazing Adventure” on GrownUpsAndDowns.com We want to hear your story. Become a Mighty contributor here .

Mardra Sikora

Man With Down Syndrome Doing His Part to Find the Cure for Alzheimer’s

My son Marcus Sikora is 26 years old. He enjoys performing, traveling, and is the author of the children’s book: Black Day: The Monster Rock Band . He lives nothing less than what can be considered a “full life,” and like any other 26-year old, has no intention of slowing down. Yet he is already taking crucial steps to prevent the effects of Alzheimer’s disease, and is contributingvaluable information to scientists in the hopes of finding the key to the cure. Marcus has three of the 21st chromosome in all of his cells, the most common form of Down syndrome. Many people with DS have a variety of treatable and/or curable medical conditions,like congenital heart disease or thyroid disease. People with Down syndrome also have an increased chance of developing Alzheimer’s disease. Alzheimer’s remains a mystery in both cause and cure. It affects each of the 5.4 million Americans living with it in a unique way. Scientists and medical professionals cannot yet answer definitively: Is it hereditary? Can it be prevented or reversed? Is a cure possible? And if so, when? The Alzheimer’s Association breaks down all of the complexity to this: “Alzheimer’s is a disease that attacks the brain.” And “It is the most common form of dementia.” Almost every person with Down syndrome will have the physical manifestations of proteins, plaques, and tangles on the brain by the time he or she is 40 years old. Fifty percent of people with DS over the age of 40 will develop dementia and other symptoms of Alzheimer’s. Let me restate to clarify the impact of this science: Almost every person with DS has the pathology of Alzheimer’s disease on their brain. Yet, only half of the Down syndrome population will actually develop the negative symptoms. Scientists want to know, how is that possible? How can a person have the physical attributes but not the symptoms? In fact, there are scientists specializing in Alzheimer’s disease who believe thatDown syndrome may hold the complex tools to combat Alzheimer’s, maybe even the cure, for everyone. Wouldn’t that be amazing? The cure. Because of this, Marcus supports Alzheimer’s research in a few ways. 1) He is part of a new, ambitious research study called The Human Trisome Project, which aims to “Benefit individuals with trisomy 21 and the world population as a whole.” 2) He supports the Linda Crnic Institute and other organizations that are working to find the keys (or force open the lock, if necessary) to combat the negative effects of Alzheimer’s, for both people with DS and the typical population. It’s not all work, though. His support for the Linda Crnic Institute is in a super fun way. On November 12th, Marcus is going to model in a festive fashion show in Denver called, Be Beautiful, Be Yourself. He will share the stage with stars like Peyton Manning, Deondra Dixon, and another Omahan, Global Down Syndrome Ambassador Louis Rotella IV! Occasionally, science and medicine bring the breakthroughs in time, in our lifetime. But not always. Who knows how soon this research will turn into pharmaceutical answers for the general public? With that in mind, Marcus is aware that his health is also up to him. He knows he has to make lifestyle choices that will affect his well-being for both now and the future. This includestaking the advice of one of the most prominent academic neurologists, Dr. William Mobley, who encourages the intake of Omega-3 via fish oils, in addition to maintaining a healthy diet. Just like everyone else, these goals are not always easy, and Marcus rarely resists if a cheese pizza calls his name. In the everyday, he embraces new ways to bring more healthy food into his diet, with the mantra, “What’s good for the body is good for the brain.” Exercise is also a critical component to Alzheimer’s prevention. For help with this, Marcus works out biweekly at Omaha’s The Bodysmith. The coaches there all take care to encourage his lifestyle goals, as they do for all of their members. Brad Dienstbier, M.A., NSCA-CPT, the owner of The Bodysmith, is not only aware of the impact of regular exercise on how a person looks today, but emphasizes the impact of healthy choices on how a person will feel tomorrow. Dienstbier created a workout plan for Marcus that incorporates his personality, pushes him more each week, allows for flexibility as goals change, and is in a safe and encouraging environment. Dienstbier addresses the importance of exercise in Alzheimer’s prevention with all of his members, but knows the risk is much greater for his friend Marcus. No one controls the future. However, in all of these ways, my son Marcus Sikora, one man with Down syndrome, is taking steps to reduce his chance of developing the negative effects of Alzheimer’s, while also doing what he can to make sure someone you love may be safe, too. We want to hear your story. Become a Mighty contributor here .

Mardra Sikora

Why I'm Not an Optimist About My Son With Down Syndrome

“We can still come back and win. It’ll only take two touchdowns and a field goal,” I said to my grandfather during one of the many brutal bowl games of my childhood. “No. They won’t.” He sat with his arms crossed, defeat accepted, but he still watched the game to the end. “You’re a pessimist.” I moved to the floor in front of the TV. “I’m a realist,” he said. A realist, it was explained to me, doesn’t think the worst will happen every time like a pessimist does. A realist takes life for what it is and accepts the whole package. A realist doesn’t invest worry and emotion into a lost cause; a realist deals with what is real. The other day I was thinking to myself, if someone had told me — that young 10-year-old me — “In 35 years or so, your son (to be) will release a children’s book. A really great one, in fact,” I’d have likely nodded my head. Sure. Sounds good. No doubt, I was an optimist. If then, only nine years later, as I sat in the hospital room having heard the words “Down syndrome” about the sweet son I had only just met, would I still have believed that future? Would I have believed it possible that we’d create stories together and he would outpace my imagination and storytelling skills? Well, yes, I think I would have still said, “OK.” Because, as people said, I was an optimist. Five years after that, while immersed in the stubborn bureaucracy of the public school system, I fought for a classroom that would integrate and challenge my son. I knew then that there was talent, intelligence and ambition wrapped up in the makeup of my boy, and these traits required a push from his educators. The school couldn’t/wouldn’t accept this and I lost. Neither my insistence of my son’s needs and skill sets, nor my attorney’s request, got through the bureaucracy. The “system” didn’t believe in my son Marcus, but his family and friends did. We moved on to the Madonna School, where defeat was not an option, and soon Marcus and I began creating together on the weekends. Now, here we are. Marcus is a 25-year-old with Down syndrome who just released his first storybook for children, “ Black Day: The Monster Rock Band,” with an  animated short on the way . And this is just the beginning; there are more stories and scripts to come, I’m sure, because Marcus is a creative, talented person with stories to tell. I knew this all along. So, like my grandfather before me, turns out I’m actually a realist. Follow this journey on Grown Ups and Downs and the Grown Ups and Downs Facebook page. Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to community@themighty.com and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Mardra Sikora

Dear Down Syndrome, Stop Trying to Take Credit for My Son’s Personality

Dear Down syndrome, I realize letters don’t usually have headlines, and this one has already cut right to the point, but there it is — stop trying to take the credit for who my son is. Here’s the deal, we all know when you’re involved there are often well-documented and usually treatable medical issues, like the fact that about half of the people with Down syndrome are born with a heart defect. My son, as an example, had surgery as a baby, and now he’s a strong, healthy young man. I give you full credit for this medical complication. There are also other non-medical characteristics considered common in people with Down syndrome. For example, recently I received a note on one of my articles about Marcus: “You should mention how loving ‘they all are.’” That, in my opinion, is a generalization that you, Down syndrome, take credit for, and frankly, I’m not going to give it to you. Number one — any statement that includes, ‘they all are’ is dehumanizing, so stop encouraging people to say it. Number two – is this a self-fulfilling prophecy? I see strangers approach my son with open hearts and open smiles all the time. I’m a good person, and I try to be pretty nice, but strangers don’t generally approach me in this way. Much more to him. Those strangers and their families were taught the social norms to hold back — to evaluate and to discern. Yet, they see Marcus and openly pursue interaction and validation. Only with Marcus do they give themselves permission to be loving and open. How do you think he responds? Number three — my son is loved and returns love. He shares encouragement because he’s encouraged. He’s also an introvert and doesn’t go out of his way to hug or high five every stranger, and he prefers for people to respect his personal space. That said, like any other young man, if he meets a lovely celebrity, he may then suggest, “What about a hug?” But come on! Who wouldn’t? Here’s another thing, Down syndrome. Stop claiming you’re responsible for Marcus’ amazing storytelling skills. You’re involved in every cell in his body, but don’t forget — so am I. I like to think I’m creative. I love theater. In our house there is art, there is music, there is role playing and characterizations, and there is improv. Yes, I know that John Langdon Down documented the amazing dramatic caricatures his patients could create with their facial expressions and body movement. And yes, I know people with Down syndrome can have strong memories, thus enabling them to enjoy and recreate their favorite show or film with ease.  These things don’t account, however, for the many original story lines, twists and complexities Marcus invents, and they are his, not yours. Also, there are still many things we don’t know about genetics and how our cells work together to make us who we are. We don’t yet know where the balance lies between what we’ve been exposed to and what comes from within us to drive our dreams and ambitions. Seriously, Down syndrome, is it really that you enhance creativity or is it that you’ve actually just muted the fear of failure? Is this triplicate really responsible for quieting the internal editor, that nagging sense that holds so many people back? Maybe with this doubt quieted, more of us would allow our creative spirits free reign. Marcus’ busy brain creates unique and expansive stories because he’s creative with every fiber, not just because of Down syndrome, not just because of me, and not just because of any one story, film or class. The magic something that makes every person their own, that slips between each cell, through our genes, under our skin: That’s what makes Marcus… Marcus. Only he deserves the credit for that. Follow this journey on GrownUpsAndDowns.com. The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Mardra Sikora

To the Sister Who Gave Students With Special Needs a Chance When It Seemed No One Else Would

There was a time in our community when orphanages and institutions housed children considered “unteachable.” Left to their own devices, without the tools to learn or encouragement to explore, without love to sustain them, these children did not thrive. However this one time, in our community, a kind and ambitious woman who was a Sister and teacher at the St. James Orphanage decided to teach the children she knew weren’t allowed to attend the public school. Then, she began teaching others who needed special attention and had nowhere else to turn. This was 1960 and how the Madonna School  in Omaha, Nebraska began. Sister Mary Evangeline gave her students a chance, she gave them love and most of all, she gave them confidence to learn. She worked under the premise that every person deserves dignity and should be taught to live as independently as possible. For many years, The Madonna School was the only option in our community for “special children.” She wrote, “I thank God for giving me a heart which cannot be satisfied with just knowing about or reading about these children of God.” Sr. Evangeline was not just a teacher but also a student of the children at the Madonna School. She wrote these words as comfort to herself and others after a young girl named Mary Beth died while still a student: So many times, Mary Beth would smile and say to me, “It’s all right, sister – it’ll be OK!” And now I remember, and I thank God for the message he sent me through Mary Beth. “Don’t worry,” she often told me – and somehow these difficult days, I cannot recall what I did for Mary Beth or what I brought her or if I brightened any of her days – I am only remembering the patience she had with me, her attitude that whatever it was, was all right. In so short a time Mary Beth learned what some of us are still trying to figure out. We found the Madonna School because my son, Marcus, although in the same building as “normal children,” was being excluded from them in his old school. The administrators saw Marcus not as a socially growing and anxious-to-learn child but instead as a severely handicapped boy with an IQ too low for integration. To me, those with the power were dooming him to failure. When we heard of The Madonna School, we were desperate for an option. On our first visit, the school building at that time was in a renovated church with small classrooms and narrow halls. But it was lit with positive energy, with ambition and, I’ll say it again, with love. How could I not choose the school where I felt the teachers wanted my child to learn? They rooted for his success. The halls were not darkened from defeat, which I literally felt like a weight in the public school option. This was 20 years ago, and again, much has changed. The public schools in my community no longer express that Down syndrome, in and of itself, is impossible to teach. Although many parents still have to work closely with the schools to promote integration and fair teaching of their children, there are several stories of success. The Madonna School, too, has grown and adapted, offering specialized teachers and therapists. All along Sr. Evangeline believed every child should be given the education and tools to be a part of his community, to be as independent as possible, to contribute, to love and be loved. In this era, the Madonna School is the option families turn to for a place of safe learning and social interaction, the students build life-long friendships. Students are taught both academic and life skills in an environment that allows positive peer relationships. And once the students reach high school and transition ages, independent living and job skills are an integral part of the curriculum. Sr. Evangeline was one of the first in our community to make adult living and life skills part of the goals for her students. As adults, she said, “I did not want them to sit at home all day with no possibility of being important to others or to themselves.” Sr. Evangeline was truly a hero among us; she dedicated her life to the children in need of a teacher and in turn taught our whole community how to value life. “There will always be special people who need special people.” This was her mission. Rest in Peace, Sister. My family and many others are indebted to your legacy. Sister Mary Evangeline Randolph, RSM, was born on September 25, 1919 and died on February 10, 2015. *All Sr. Mary Evangeline quotes are from her autobiography, I Have Seen Him. This post was originally published on the Madonna School Blog. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

Mardra Sikora

A Director’s Siblings Inspired Her to Make a Riveting Film About Down Syndrome and WWII

When Sarah Lotfi was a child, she and her younger brother, who has Down syndrome, used to play in front of the TV, and act out every movie and show together. “Even if he couldn’t speak the lines, he would get the intonation right,” Lotfi told me when we spoke. “It was fun and exciting for us.” She loved to see him connect with what was on the screen. It’s fair to say Lotfi also connected with what was on the screen — she’s now an award-winning screenwriter and director. Her latest project, Menschen , is her most personal film to date. “Maybe before this point I would have said, No [to making this],” she confessed. “It’s too close to home.” But when the story called, she rose and answered. Shortly after making a World War II short film, The Last Bogatyr, Lotfi came across a picture of a boy with Down syndrome that an SS photographer took during the WWII time period. “Oh, God,” she thought. “What happened to that kid?” How could someone live with those overwhelming odds against them? “I wanted to tell a story of hope,” Lotfi explained. So she did. In under 30 minutes, Menschen follows through on Lofti’s promise to “challenge prejudice behind stereotypes like ‘enemy,’ ‘disabled,’ or even ‘hero.’” Lotfi also has a sister with Down syndrome and she pulled from her experiences with both her siblings to create a character named Radek, who is the “found boy” in this complicated story set at the end of the war. Radek is played by a young actor named Connor Long, who has Down syndrome. Long currently lives in Colorado, where the movie was filmed. Lotfi didn’t meet him until his audition. “The moment I saw Connor, I thought ‘He’s perfect,’” she recalled. When he did read, he so powerfully conveyed the emotion, he made another reader cry. Lotfi and Long on set Long went on to win Best Actor for his performance in Menschen from Filmstock Film Festival. (Go Connor!) This was his first film; check out his Facebook page for the line-up of more great things in the works. Lotfi said she enjoyed getting to know Long during filming. She describes him as a “character” and a “charmer,” but mostly she’s impressed with his ambition.  “It’s amazing what he is doing as a self-advocate,” she said. “To see him is…inspiring.” Since the film’s release, people around the world have shared their connections and personal stories with Lotfi. She’s touched by anyone who sees a reflection of themselves or someone they love in the film. Menschen is being presented across the country in collaboration with The Arc , an advocacy group supporting the movie’s primary theme, “Life worthy of Life.” To see more about the film check their website and Facebook page. To read plot summary and reviews, head  here and here .

Mardra Sikora

This Is My Definition of a Good Life

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,” with talk of change. So I smiled in agreement while my mind wandered over the parallel metaphor to our world. I admit, it gets old defending the place you call home. Sometimes a person gets 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 and their hometowns, 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. It’s not a new idea, the metaphor of the physical place we find ourselves and our larger fate. So here we go… Every October we celebrate Down Syndrome Awareness Month. We celebrate because Down syndrome is part of who Marcus is. Like many families who find themselves in an unexpected place – it is not about making the best of it; it’s about celebrating the best of it. What I’d like to say to those who don’t live in the place we do: It’s not what you think. Yes, sometimes storms come in and make life difficult. Like Marcus’ heart surgery when he was still a baby, handing my child over to the surgeons who would cut and mend, tear down my being and build us all up again, stronger, safer. And there are many beautiful places on this earth, including the amazing sunsets that linger on the horizon here. Yes, the same sun rises and sets in our world as yours and my love for my son is no more and no less than the love any mother can have for their child. I see his beauty, his talents, his ambitions, and these parts of him are not diminished by Down syndrome. My biggest disappointments come not from Marcus’ disabilities but rather the limitations of other people to recognize his abilities. To me, the good life means preparation: when it’s cold, you put a coat on. The good life means consideration: please and thank you and working hard is something to be proud of. The good life means both seeing beauty in the peaceful moments as well as celebrating with the roar of a crowd. For us it is also about a lifetime full of laughter. Marcus’ guiding principal is to make sure the people around him are happy. It’s nice to live with someone who has other’s happiness as a top priority. Yes, Marcus lives with us. By the way, so do 6 million other adult children in this country. And just like many of them, this is a choice we have made together. There are options; we chose this one. It’s not always an easy life. (Boring!) It’s not the perfect life. (Who has that?) It is, in fact, quite a good life. Check out more on Grown Ups & Downs.

Mardra Sikora

What Parents Do When Child With Down Syndrome Grows Up

“What are you going to do when he grows up?” That’s the question posed to you for the last 20 years. And although you’ve given one  answer or another, time after time, it still feels as if this moment has snuck up on you. Remember the day you found out you were pregnant? You knew then that this child was going to be the rest of your life. And it didn’t scare you. Not like it should have. Youth is invincible. Then when he was born and you tried to figure out what Down syndrome is and what it means, how to prepare you and him for the world and how to find support in the community. So you went to a support group for special needs children. That turned out to be kind of a mistake. You were still smitten with your beautiful boy when you walked into a room full of anger. Bitterness at the schools. Frustration with insurance and government red-tape. Fear filled you. Was this your future? Were you going to brim with rage? Yes. At times you were. You fought and reasoned and tried to reason and fought with the public schools for his first five years of life. Good teachers, good opportunities turned against you. Sigh. But then you found a private school that nurtured him, really wanted the best for him. They were growing and learning too — that made the match better, stronger. Not mired in predispositions. So you made it, made it through heart surgery, pneumonia, the H1 Virus. Soon enough he showed a passion for theatre, love of music and performance and hotels. You love to explore new cities and he loves hotels. Then, when he got obviously old enough that you could no longer take him to the ladies bathroom with you, you dreaded letting him go alone into the men’s room in a strange city, strange airport, strange theater. Each time you wait, and wait and wait – hoping he will wash his hands, that he can work his pants himself, that no one will harm him. And yet, there are times he comes out to tell you “the man helped me.” With the sink, with the paper towels, with the door. Never a concern on his face. Never a problem breathed. And you sigh. And thank God he has the bladder of a camel so you can plan for bathroom breaks hours apart and arrange for safe places or ways to find “family bathrooms.” Which he hates, by the way, but you insist. Other than the school to some extent, you’ve kept your family an island.  You’ve worked and he’s joined you. You’ve coun ted on his youth and innocence to protect you from… what? From the future? Well here comes graduation day, barreling down like you never knew it was coming. The two-minute warning bell and you’re standing without your homework, without your research paper, without a map to class. Even when Marcus was born, with nine months to prepare, you had exactly two packs of blankets, a bassinet and some newborn pajamas. You weren’t really ready then either, but everything worked out. Tomorrow he is a “grown-up.” What are you going to do? Well, I guess you’ll do the same thing you did yesterday. Ask if he had breakfast and remind him to take his thyroid medicine. Drive him to work and smile when he comes back to the car humming a happy tune. Argue with him over which radio station to play in the car and how loud. Look into the acting classes you heard about and keep trying to find a voice coach. You’ll try not to panic when you read about early onset Alzheimer’s, and you’ll make sure he takes his vitamins and goes to his workouts at the gym. You’ll smile when he tells the frazzled server at the restaurant, “You’re the best,” and she stops for a minute, smiles and says, “Thank you.” You’ll laugh every day. You’ll know you are loved. You’ll wonder what you were so worried about. This post originally appeared on MardraSikora.com. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .