What If the World Got to Decide if My Son With Down Syndrome Was Worthy of Living

Last night was a night I was not prepared for. Last night, thousands and thousands of eyes were intimately undressing me. Removing layer upon layer, seeing the parts of me I don’t so carelessly show, taking in each and every private detail, and once I was fully exposed, they informed me they did not like what they saw. Last night the world at large discussed if my son, Oliver, was worthy of life. Yes, you read that correctly. People all over the world opened their smart phones, logged onto their tablets, got on their desktops and climbed their high horses to give their unwarranted two cents about a segment on “60 Minutes Australia” that discussed a test that could eliminate Down syndrome. Strangers calling me cruel for bringing Oliver into this world, comparing Down syndrome to rectal cancer, wishing for a world where my son does not exist.

I spend most of my days telling other parents and loved ones of people with Down syndrome to speak up and be strong. Last night I was not strong. Last night I was weak. Last night I held my child with tears running down my face. Last night I walked away from social media in fear of what I would read. Instead, I spent the night cuddling what I see as sheer perfection questioning the world we live in and wondering how so many people are so uneducated about what it means to have Down syndrome. How in Australia nine out of 10 women chose to abort? Why? It all starts with what happens after the prenatal test is given.

I chose to be tested when I found out I was at risk for having a baby with Down syndrome, not for termination, but preparation. Let me be clear, I will never tell a woman what to do with her body, but what these women, these parents, are being told in these cold, quiet doctors’ offices is close to forcing them to chose termination.

 

We are living in a world where prenatal Down syndrome diagnoses go hand in hand with a list of the closest abortion clinics. They tell mothers-to-be that if they keep their child, their lives will be ruined. They tell couples their marriages will be destroyed. This stigma has to end. The fear has to stop. We need to educate what life really will be like. Some of us have children who don’t have heart problems or stomach issues. Delays could be minimal. They will go to regular school. This idea that we can stop the difficulty of raising a child with a disability before they are even born is asinine. Children are born with unexpected issues every day, there are accidents all the time, do we eliminate those children too? What happens when there are prenatal tests for autism, cystic fibrosis, cancer risks?

For those out there whose children developed illnesses and disabilities after they were born, are your children less worthy of life to you? Would you have “eliminated the risk” from the get go?

Yesterday my son walked by my side through the beautiful streets of a downtown square. We had coffee and breakfast outside with friends; we went to a car show and played. When we got home he fed himself dinner and then went outside and played with his grandparents. We cuddled before bed, he gave me kisses and hugs goodnight.

If this is what people want to eradicate, I feel so sad for them. Sad they will live without experiencing the joy and love and happiness that comes with a child like mine. Oliver has made me a better person; he has made me stronger, more open-minded. He has taught me to live each day to the fullest, to never regret, to speak my mind. To never have had the experiences Oliver has given me would be such a loss.

Science is science, they see numbers, they see results and I applauded the researches who are working to better the world, but the approach of this test is not bettering our world. It is creating fear. It is creating uneducated, biased opinions based on old world doctors harshly shoving diagnoses at scared mothers. Science is cold. It’s numbers and data. Numbers and data do not begin to describe my Oliver.

Let women have the choice, give them the option of this test, and let them make their own decisions. But instead of fear give them hope. Instead of a death sentence show them what life will really be like. Let them speak to parents who have been where they are. Let them speak to adults with Down syndrome. Show them the kids who are driving, and going to school, and walking the runway at New York fashion week. The business owners, the creators, the people who are changing our world for the better, and all of them rocking that extra chromosome.

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