Children with Special Needs: Embrace, Don’t Erase

By Kurt Kondrich

Let’s first address the proverbial elephant in the room: no expectant couple prays that their baby is born with special needs. 

All parents-to-be, my wife Margie and I included, prayed that, above everything else, their child would enter this world healthy. That’s what happened with our son Nolan, born in 1999. 

At the time, I was a Pittsburgh police officer. Over an eventual 20-year career in law enforcement, I faced many precarious situations, even some where my life was threatened. I accepted the danger willingly, having sworn an oath the “Serve and Protect” others.

I just never thought my commitment to that oath would be tested at home. But that’s what happened in 2003, when Margie and I welcomed our second child, Chloe, into our family.

Prior to her birth and because Margie and I would be what is considered older parents, we were encouraged to undergo tests to determine if our daughter was showing any abnormalities. Call us naïve, but we didn’t understand why these tests were being pushed on us so hard. All we knew was we were already in love with our second child and eager to meet her.  When our beautiful baby arrived, she brought with her a smile that would melt your heart. 

She also had Down syndrome, which is defined as a genetic condition caused when an unusual cell division results in an extra full or partial copy of chromosome 21. Margie and I now fully understood why we were pushed toward prenatal testing. It was reinforced in the delivery room when hospital staff seemed surprised that I was eager to hold Chloe and welcome her to the world.

We didn’t realize it in that moment, but our lives were changed dramatically and forever. Children with Down syndrome are often described by their parents (after the initial shock and worry) as a blessing. That is true. But what is also true is that these children also bring their own set of unique challenges for their parents and any siblings. They give much: innocence, trust and love. But they also demand unique, almost constant, concerns.

In fact, when Chloe was born, we had no doubt that we loved her and wanted her. But what we didn’t have was any idea how to properly care for her and raise her with the best chance for as normal a life as she could attain. What was most disheartening was that it seemed like no one had any answers for us.

For the sake of my daughter, I committed to finding those answers. I did research and learned (sadly) that 90 percent of children in some countries diagnosed prenatally with down syndrome were targeted and eliminated. In fact, that number is 100 percent—100 percent!—in Iceland, where they brag that they have “cured” Down syndrome in their country. 

It wasn’t long before I made the leap of faith decision to leave the police force, obtain additional education and become a “Dadvocate” for those children unable to speak for themselves. Chloe and I began an advocacy effort that eventually led to the Pennsylvania Legislature overwhelmingly passing the Down Syndrome Prenatal Education Act—also known as Chloe’s Law—which my daughter signed alongside then Governor Tom Corbett in July, 2014. 

This landmark act ensures that parents of preborn babies diagnosed with Down syndrome receive the factual, positive information and resources they need to raise their child. It doesn’t eliminate the unfortunate prejudice, judgment, even fear, we parents of children with Down syndrome face constantly. But it does offer some assistance where very little existed before.

That success, just a baby step in the general scope of the challenges parents of children with Down syndrome face, catapulted Chloe and me on a journey I would never have imagined before she was born. We have spoken to numerous organizations, including to the United Nations three times, a number of national prolife organizations and a handful of state legislatures. Chloe was put on the cover of the book “Brilliant Souls,” featuring stories about incredible people with down syndrome and her picture has appeared on the Big Screen in Times Square five times on behalf of the National Down Syndrome Society. 

We have been on national media, met with religious and faith leaders across the country and even accepted an invitation to appear at the White House with President Donald Trump and former Vice President Mike Pence for the 2018 March for Life. Chloe’s framed picture with the Vice President hung in the West Wing of the White house.

The list goes on, as do the of the awards and honors bestowed upon Chloe and me, which we humbly accept on behalf of all those who work tirelessly to support members of the Down syndrome community who often feel alone, hopeless and concerned. What we have found is a network of souls dedicated to supporting each other and to showing the world that, although children with Down syndrome can be a challenge at times, they give much more than they take.

Our saying is, “Embrace don’t erase” Down syndrome and after Chloe’s birth I had my favorite Bible verse, Proverbs 31:8, tattooed on my arm. It sums up our journey: “Speak up for those who cannot speak for themselves.” 

Down syndrome is a blessing.