The Best Endings Aren’t

Mardra Sikora Special Needs

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They all lived happily ever…pleased me as a child. Even as an adult, I like a story to have a “happy ending.” In real life, though, how many happy endings are there, really? I shudder to think.

Instead, I often focus on beginnings. For example, the beginning of Marcus, my first and only child: A beautiful (of course) son, born with deep blue eyes (which stayed blue), a heart defect (which needed repair), and a triplicate of the 21st chromosome.

When he was nearly two years old and weighed only 18 pounds, I carried him through the hospital doors the day before the necessary surgery to repair the hole in his beating heart.

That night, with him sleeping in my arms, I almost fled. I almost stole him away from the place where I knew they would cut him open, and hold his heart in their mortal hands. How could I risk these precious moments for a chance at a lifetime?

What if they…what if he…I was only 21 years old myself and felt my life would most certainly end if he didn’t wake from surgery. I barely knew him, really, but I knew my life relied upon his.

Was I 21? Those were the years of all work and no play. I didn’t know the power of a single glass of wine or a margarita with friends. I was married but very, very alone. A few friends came in from out of town, stayed as close as they could; we all held our breath when we should of held each other. We didn’t know better.  

I could not see past my own blinding fear of the present. The pain he suffered. The trauma he endured. He…forgave me. But it took time. He recovered from surgery with only a few speed-bumps; it became a whole new beginning. He was stronger, faster, and louder. WOW – who knew what oxygen could do for lung power? Soon day-to-day life took over and the long scar on his chest faded into a white line he refers to with, “When I was a baby, once.” His body remembers all of it, as evidenced over the years with an unreasonable (but justifiable) anxiety before doctor visits and a complete refusal to wear a wristband. Ever. Of any sort.

It’s not uncommon for people with Trisomy 21 (also known as Down syndrome) to require some form of heart surgery. There have been other effects of this chromosomal condition that are part of Marcus’ health and perhaps, personality. Well, no perhaps, science and his karyotype tell us every cell in Marcus’ body has 3 of the 21st chromosome, and I’m sure his personality emanates from every cell.

One thing I’ve come to realize is what makes a “happy ending” (in real life) is that it’s really just a beginning.

Another thing that makes a “happy ending” is resolution.

About two months ago, Marcus went back to that very hospital. I saw the couch where I signed the documents that said, “Yes, I understand the risk. I will not hold you accountable for…” (Could it really be the same couch over 23-24 years later?) I reflected on the memories. (Reflected…wallowed…whatever.)

All those years ago, during his recovery in the hospital, we requested a TV with a VCR whenever we could. We watched “Sesame Street” with his little roommate and we giggled at Grover and Oscar’s escapades.

But this time, on this trip, he walked through the doors as an adult and author, he came to share his story: Black Day: The Monster Rock Band. The story he created and the animated short, which includes his own song and voice-over work, was sent live feed throughout the hospital. He sat in the front of the auditorium and answered interview questions before and after the show. He told me it was important to him to go to the hospital and “help the kids.”

While I beamed with pride at his moment, I also wished with everything in me it gave a few minutes respite to the families struggling with the fears we knew ourselves years ago. I hoped Marcus’ movie brought them a few minutes to smile, giggle, maybe even sing together, in the same way his favorite videos brought us a moment of escape.

With the release of his own children’s book, Marcus’ life story has taken on yet another beginning, and yet also, on his heart surgery story, I concede – he created his own “happy ending.”


About the Author

Mardra Sikora

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. You can follow their adventures at .

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March 2016 – ASPIRE
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