sigToday I am going to try to explain myself, this website, its name and purpose, but not necessarily in that order. Not necessarily in any order, as a matter of fact. I think I’ll start with answering a few “why’s” instead.

Why did I create this website?

theinnocentpricebookI created as a platform builder for a novel series called The Innocent Prince. The Innocent Prince is a fantasy that explores the “what if” a prince were born with Down syndrome during the middle ages. This question entered my imagination a long time ago and I started the process by writing about the characters involved and the world they lived in.

Nearly five years ago I “got serious” and buckled down to finish that book. As part of the process I learned that to sell a book one needs a platform. So while I was in the finalizing stages of proofing and beta readers of the first book in the series, I also began this website in order to build said platform.

Enter GrownUpsAndDowns

As part of this potential platform, I also began blogging about our real-life, Marcus, and Down syndrome. Adults with Down syndrome and their families appeared to me to be strangely silent online. Well, truthfully not so strangely, as many of these families are probably not at the most logical age to jump into the blog fray and learn the tactics and technology involved with writing and sharing their stories online. Also, most of us/them, parents of adults, we’ve come to realize the stuff of living without the benefit and/or pitfalls of the Internet and well, that’s that –  for most families.

That’s what I thought anyway.

So as I wrapped up the initial drafts of The Innocent Prince I started sharing Marcus’ adventures, lessons we had learned and were learning about Down syndrome, and some specific challenges that are faced by adults. I started talking more about education and advocacy. So, Funny thing about supply and demand and learning and creating…as I began writing and sharing these issues, I discovered a hungry audience. I also discovered more questions that *I* wanted the answers to, so my writing became more and more focused on these things.

Also, Marcus


There’s also Marcus himself, who has really come-into-his-own over these last few years,  much more than ever before. Maybe I was paying better attention to what he was trying to teach me, I became a better listener, and I took more notes.

But Still

There are many reasons I did not want to start blogging about Marcus and our life, most of the concerns surrounded around the idea of others easily misconstruing our adventures. People not “getting it.” Also, and perhaps the biggest concern,  the tightrope of needs and expectations of other and new parents of children with Down syndrome: What to share that is realistic and encouraging, real and hopeful, and not encroach on Marcus’ privacy, safety, and pride? As I said, a tightrope, and frankly we’re working without a safety net.

What I found, as the posts developed, is that what the audience wants most is Marcus stories and secondarily further helpful, educational information about the challenges and opportunities of/for adults with Ds. I began to regret ever using my own name as the website url. Everything is less and less about me and more and more about, well, not me.

That said, back to the tightrope. I realized that, of course, it IS all about me because the only honest way to share this information and the Marcus lessons and stories is to be absolutely obvious and transparent that this is all through my eyes. This is my interpretation of the situation. This is the layman’s explanation of what I’ve researched, combined with my experience and perspective. So maybe it’s not about me, but rather through me.

44649402Then came Black Day.

Black Day: The Monster Rock Band, Marcus’ book and the accompanying animated short. This is just one of the many stories that Marcus created from what he dubs: “the movie in my brain.” Long story short (more here) this story stuck and we worked together to tune, edit, and format it into a storybook for children.

Then we collaborated with an illustrator, Noah Witchell, who took careful note of Marcus’ vision and direction of the project. Again, this site (and life) took another focus and turn. And again, I thought – Where’s the Mardra in Ah well, as head of the: Marcus Sikora: Author marketing department, and also funding department (new websites aren’t cheap), became a subsidiary of

If you’re still with me, you may be wondering, Whatever happened to The Innocent Prince? I completed the first novel, yes, I think it’s fair to say that after four or maybe five complete drafts, it can be called, “done.” But no, it’s not “out” and never will be. Let me tell you, it’s hard to say that. There is nothing I hated to hear more as a new author than experienced authors talking about their first book, or even books, in the hidden drawers of their office. I said to a friend, “That’s great for people who started in their 20’s, but I don’t have TIME for that!” And, while that’s true, it’s also true that this book is a first novel and I’m not willing to let it out of that drawer. I am willing (begrudgingly) to accept all I have learned about story and craft over these last (nearly) five years as I work on Book Two. It was my (latest) “master plan” to have Book Two (Book One to the world Book Two to me, and those on my inner circle who were privy to Book One) done by the end of 2015.

Another New Plan

PGTDS - bWell, with this lofty plan in mind another opportunity raised its hand. That opportunity was/is called The Parent’s Guide to Down Syndrome and the hand was raised by the lovely Jen Jacob. She was approached by F+W/ Adams Media to write a book for new parents with information that included information and resources from prenatal diagnosis to adulthood. Faced with an unreasonable timeline, she contacted me and we decided to play. By play of course I mean reach out to our community, gather resources, and write like madwomen. Which we were and we did and I’m delighted this guide is available here. 

Now, good news!

Finally, a mardrasikora url makes sense! Also, now included, too. This book is such a brief overview of so much information that it, as life does, brought up many more questions and areas that need to be explored at the next level. This opportunity proved yet another discovery of the whole supply vs. demand conundrum faced by our community. Nothing makes me happier than being a part of filling this long-overdue demand for current information for parents.

For the record, I don’t find this to be the end-all resource; I actually see it more as a beginning-to-all resource. Also, I am proud that the resource links included span the lifetime and include true experiences of families across our diverse community.

Any chance you’re still wondering about The Innocent Prince? Well, as mentioned, I have started Book Two (which for you will be One) and am determined to utilize the years of studying craft and story and taking the seemingly mandatory rejection beatings in order to create a full, engaging story, set, and characters for my readers. I will plug here that if your interest is at all piqued to check out my fiction, last year I released a book of short stories called The Future and Other Twists, that has been well received. Also I am pleased to be the end story in the anthology Forging Freedom II as well as other anthologies both in print and online. You can also get free glimpse of that side of my brain by checking out and following The Innocent Prince blog here. 

Can you believe this explanation all began today because of the prompt, What I’m really trying to say – ? Because I’ve been wanting to clarify why we’re here in this little corner of the inter-webs, the evolution of this site and it’s components, and most importantly the moral to our story. Which can actually be summed up in an experience I had the other night with Marcus.


We were in Chicago and seeing the new musical Beautiful. Beautiful relates the beginning of Carol King’s career as a singer/songwriter.

Now, to back up just a scoosh, whenever asked about what we were going to do in Chicago, Marcus told people we were seeing the musical, Beautiful. Then he followed-up with “It’s about Carol King,” and then, “She’s good friends with James Taylor.” I think it’s interesting that this is what Marcus shared because it showed A) How he connects people together via friendship and B) Also how cool he is as a 25 year old who knows both Carol King and James Taylor’s work.

Anyway, we chose this show because it’s one we haven’t seen before and also because we thought Quinn would be interested in it too, as a musician and songwriter. The show began with the character of Carol King entering the stage with only a piano on the set. (We learn later this is to replicate her first performance at Carnegie Hall.) She begins by breaking the ice with a bit about herself and where she’s from. Then she tells the audience she didn’t always plan or even want to be a singer/songwriter, but sometimes life takes you to places you didn’t expect. (Now I’m going to paraphrase the lines as I remember it.)

Sometimes life takes you to a place you didn’t think you wanted, on a journey you never thought would be yours. Then…that life is beautiful.

So during this introduction my mind wandered to the parallel to having a child with Down syndrome and how true this is and that I should look up this exact quote so that I can share it on The Parent’s Guide to Down Syndrome website and Facebook page and because thoughts whip through the mind quicker than their explanation, I want to clarify that all this raced through my head before she finished the word “beautiful.”

Once the word beautiful finished from her lips, Marcus gestured to me with his thumb and leaned over. He whispered to me, “You are. You are beautiful, Mom.”

Aw – C’mon! I mean seriously. Could there be a luckier, more blessed, momma in the room just then? At this point, I’m sitting there all teary and emotionally filled up and we’re only about 90 seconds into the show and I’m thinking, “This. Hold Onto This!”

And could Marcus make the previous point any more clearly? I don’t think so.

So I guess what I’m really trying to say is what someone else already said, that whole journey and unexpected and beautiful wrapped up in a knot, thing. And the way I’m trying to say it is by sharing Marcus with you. Because, he’s really the one who says it, the most clearly, so many times.

Also, thanks for being here and reading and being open to sharing what he’s teaching me along the way.

PS – This is the long version to a short blog posted yesterday. If you’d like to read what others in an awesome clan of bloggers are really trying to say, check it out here.