To read on Mardra Sikora page:
My Most Important Job
by Mardra Sikora
Roughly 27 years ago the universe looked over my resume, took into account my previous experience, my qualifications, and my goals and gave me a job that I was totally – I mean utterly – unqualified for.
And as an added bonus and complete surprise, the universe also immediately promoted me, as a show of good faith, to the role of “special needs parent.”
The application process was cleverly disguised, I won’t bore you with those details but the final result was a new lifelong job with very few personal days, occasional opportunities for “working” vacations, and joyful benefits beyond what I ever expected.
From the Outside, it didn’t look good
At the time of my son’s birth I was an unemployed, single, barely-in-college student. Although my pregnancy came as a shock, my father stood by me, almost singularly, those twenty-seven plus years ago. When the most recent prenatal testing came upon the market, I confronted him with the question, “If you knew my unborn child had Down syndrome, would you have pressured me to abort?”
“Who you were at that time?” He paused, “And who I was? Yes.” He was solemn in his honest reflection. Then his expression changed. “Can you imagine?” he exclaimed, the smile bursting from his face, “What a mistake.”
That conversation slips into my mind as I read about women learning a potential diagnosis at only 10 weeks pregnant, and what those around them will offer as advice.
Sometimes, It is Hard
I admit, there are times I’ve thought, “This is hard. Too hard. In fact, this may break me.”
Because, as previously noted, I am a mom.
So far as I can tell, by comparing to every other parent I know, these feelings are part of the gig. It’s one of the features of parenthood that you know going in, but you don’t really know, right?
For me, the thing I feared the most was losing him. From the moment I met my Marcus, I could no longer bear the idea of life without him. Oh…there were then, and continue to be, many other fears. Fears for his health, his safety, his well-being, random extensions of his own fears, and bigger fears about the world in which we live and his place within it.
For example, when Marcus was less than two years old he had heart surgery. This was one of those unbelievably hard times. That was 25 years ago and I am ever thankful for the achievements of medical science and the surgeons and staff who did their part to give Marcus his chance at, well, life. We may have to rely upon compassionate professionals again, someday, but right now Marcus is a strong adult with a full life.
However, because Marcus has a visible diagnosed disability, Down syndrome, his life is one that I feel we are constantly obliged to prove its worth.
And that, World, is exhausting.
Exhausting, but I’ll do it now, and again, for as long as I have a breath within me, and if my words carry on, long after I’m gone, too.
Tuck in, we’re not done yet
The most recent reminder of this came last week via news stories that broke into mainstream media of a trend that’s been growing for a long time, the systematic reductions of people being born with Down syndrome around the world. The latest CBS report about Iceland ran with the headline: “Inside the country where Down syndrome is disappearing.”
The very short version is that, through selective abortion, there are only about 2 children with Down syndrome born per year in Iceland. Iceland is a very small nation, of only 330,000 people. Still, that’s a live birth rate of a child with Ds of about 1 in 1600. As a matter of comparison, the live birth rate in Ireland (where abortion is less common) is 1 in 546.
It’s not Just Iceland
Iceland isn’t alone in this phenomenon, for example, that 1 in 1600 rate is the same in France. Denmark several years ago even proclaimed the selective termination rates as an “fantastic achievement” and noted they will be “Down syndrome Free” by 2030.