All posts by Mardra Sikora

U is for Under – A to Z Blogging Challenge

There are many great “U” words I tossed around for our Music In Me theme. “Unbelievable” came to mind. One of Marcus’ favorite songs is “Unwell” and mine too and we could talk about that for awhile.

But no…there are only a few days and posts left and so, in order to squeeze in what I consider a very important and poignant song, image, and message.

Soooo, U stands for Under which rhymes with Wonder. 

“Wonder” by Natalie Merchant

I really think we couldn’t have this theme without this one. Enjoy!

“Wonder”
By Natalie Merchant

Continue reading U is for Under – A to Z Blogging Challenge

R is for the Ring – A to Z Blogging Challenge

R“Why do you want to be a writer?” He asked.

“Immortality.” I answered.

For once, he had no retort.

Artists remain alive in our conscious, remain relevant to our soul, always. In different ways, yes. In very personal moments, definitely. In the quiet and in the noise, artist’s work scream history and whisper emotion. Forever.

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P is for Precious – A to Z Challenge

Guest Blog from Downs Side Up

PThe Power of a Song

I recently began thinking about a song by Depeche Mode that was on a compilation CD in my car at the time I was pregnant with Natty. Just another track, probably one I skipped over a hundred times to get to my favourite.

After her birth the very same song suddenly became full of meaning, so hugely significant it could have been written just for us. It seemed to be speaking to the family of a child who was born vulnerable and spending her early, precious, irreplaceable weeks in a Neo-Natal unit. I actually listened for the first time.

It summed up the guilt we felt at our shock after her arrival, the sorrow that cut through us as we watched her being subjected to uncomfortable procedures, the pain of the empty crib at home where she should have been sleeping, the fear that she would grow up remembering the aloneness in the incubator, that overriding feeling all parents have that they would do anything at all to make things better.

Continue reading P is for Precious – A to Z Challenge

E is for Enjoy the Silence – A to Z Blogging Challenge

EDon’t you love the irony of songs with silence in the title? Simon and Garfunkle’s “The Sounds of Silence” is a classic.  The recent remake by Disturbed is (perhaps surprisingly) also pretty amazing.   My favorite, “Enjoy the Silence,” came out in 1990.

1990, the year The Simpson’s debuted with their own TV program. Gas was around $1.34 a gallon. East and west Germany reunited. And I was pregnant with a baby boy.

I didn’t have an ultrasound tell me, I just knew.  When “Enjoy the Silence” came out, I rubbed my belly and imagined the day I would sing to him, “All I ever wanted, all I ever needed is here, in my arms.”

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B is for Black Day Band – A to Z Blogging Challenge

BMarcus Sikora, a young man with Down syndrome is the lead vocalist and co-writer of this song, “We are the Band (Black Day!)” which was inspired by/written with his book, Black Day: The Monster Rock Band.

Marcus and Quinn Sikora co-wrote the lyrics and then a small but mighty group formed to work out the melody and lay down the tracks. Phil Reno is the guitar soloist and we think it rocks. Brad (Dienstbier) is on the bass (of course) and Quinn is drummer and programming and so on. There were others in the background, as there always are with music and videos. AND Noah Witchell – the book’s illustrator and animator of the short and this video –  – – WOW!

It was fun for me (Mom) to watch this all come together and I think you’ll agree that Marcus is, in fact, a master at the “rock and roll scream.”

Continue reading B is for Black Day Band – A to Z Blogging Challenge

Finding Forever Families!

You know, for years (YEARS) I kept a bassinette in my garage, just in case someone left a baby on my doorstep. No one ever did, likely because in this day and age, it doesn’t usually work that way. (Fortunately, I should add.) Nope. Children whose birth parents are unable to provide for them are a part of a system, a system I was frankly intimidated by and afraid to be involved in.

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 I have recently learned that there are so many helpful resources to enable families to adopt, and today we are going to focus on a few organizations that are ready to help families adopt a child with Down syndrome.

Through the 321eConference I listened to two adoptive parents tell about their experience and the resources available through the National Down Syndrome Adoption Network.  The NDSAN serves families in all 50 states and works to find Forever Families for children.  The NDSAN mission “is to ensure that every child born with Down syndrome has the opportunity to grow up in a loving family.”

Sometimes adoptions are arranged prenatally and sometimes the children come through foster care. The circumstances vary as widely as the beautiful families they serve. There are open adoptions or closed. There are two primary constants: The NDSAN wants to help find and make the best match between a child and a family and every child needs a safe and loving home.

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B – Bloggers Advocates

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It would be a gross disservice to not include the families who advocate online by sharing their truths as part of the All Together Now collaboration here on The Road. (Of course, you may think we are partial to the blogging cause, as that is what brought us together to begin with – Fair, but not the whole story.) A question that springs up in advocacy circles is: Why aren’t there more adult self-advocates or families of adults with Down syndrome out there blogging? Sharing their world? Telling their stories? Unfortunately, this lack of voice and presence often is misunderstood to be hiding.  You know, the old fleeing equals guilt theory.

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About Us!  I’m Mardra

Warning: Mardra is a blogger/author/speaker who has forgotten how to give short answers and rarely commits to anything without a prelude of some sort. 


So how about some fun questions:

Who is your favorite Muppet? 

First, my prelude: I Love the Facebook Induced “quizzes” like Which (fill in the blank) are you? Several years ago I took that quiz and it said that I am Janice, You know, the lead guitarist in the Muppet Mahem band. I felt pretty good about that. She’s cool. That doesn’t answer the question though, does it? It’s a hard question. Alright already! I choose Grover. I love him as a waiter (“Charlie, we got a live one here!”) I love him as his alter-ego, Super Grover! He’s lovable even when he is scared or frusterated (which I am a lot and wish I was still adorable). My favorite book as a kid was, The Monster at the End of this Book. And in this clip with John, well what is not to love: 

What song do you sing in the shower? 

I don’t sing in the shower; I sing in the Bar. Favorites to sing in the bar are: Counting Blue Cars by Dishwalla, Dreams by Fleetwood Mac, and umm, whatever Kamikaze Karaoke sends at me. 

What’s your favorite food?

A really good steak, I wish it wasn’t, but it is. For now. 

How do you relax? 

What’s that? Hmm. Not my area of specialty. Let’s go with Music. And lately, wii Monopoly with my husband. But that’ll change soon because I taught him all my tricks and now he beats me too often. And that is not relaxing! 

Along with some issue questions:

What do you think about DS-Connect?

I think it’s a great idea. I hope it meets its missions of connecting people to doctors, each other, and researchers to help those with Down syndrome and their families. Sure, I see all the potential scary side effects (Have you read any of my speculative fiction?) but I remain in the present and hopeful. I have to.

How do you feel about sheltered workshops?

Seriously? Start here and read for about 30 minutes. Go ahead. I’ll wait. 

Where do you see your loved one living after age 30?

It took me about 22 years to start living in the present with Marcus, so ask me again in five years. 

What is one thing you want the world to know about your son? 

Marcus so often see the best in others, he brings it out in those he loves as well strangers; the world is a better place because he is in it. 

Research and the man voice pill

Let me tell you about the “man voice pill.”

Marcus and I like to watch old Disney cartoons together, like classic Mickey Mouse and friends. Not black and white, he’s generally only interested in color TV, but classics just the same. One of our favorite characters to watch together is Donald Duck. Poor Donald, always getting into trouble.

In one particular episode Donald tries selling hairbrushes door-to door. At each house, as soon as Donald speaks, the door is slammed in his face. Why? Because no one can understand him, because they don’t want to or like to hear his voice.

But wait – there’s hope! A man selling a magic pill. When Donald swallows this pill, he approaches each door with his new smooth voice and now it’s all smiles, all go. Doors open.

Marcus sat up quite straight at this plot.

“I want that.” He said, “I want the man voice pill.”

It’s no wonder. How many doors are slammed on my dear boy? How many more doors would be opened if only he had a “man voice?”

If only he could articulate for you, World-behind-the-door, a little more clearly, a little more quickly, would you give him a chance? How many doors would open?

Medical/science/pharmaceuticals are researching ways to enhance the cognitive and communicative abilities of people with Down syndrome. It’s something that is difficult to talk about. I fear people will misunderstand, perhaps I don’t even give proper credit that most people could understand how complex the emotional reactions and sensibilities collide at the prospect.

I’m certain I don’t I have the capacity to put the issue into the right words, one of those subjects too tricky to articulate. All I can say for certain is that Marcus wishes for a man voice pill and if it were possible, I would consider giving it to him.