Who determines a life not worth living?

The misconceptions blog series continues with another guest writer. I’m excited to have Peg Chaidez with us. She also offers a perspective as a parent. Her son was born with Arthrogryposis. This story is powerful, beautiful, and an important part of the dialogue. Who determines a life not worth living? Read on,  friends.

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During the ultrasound, excited to learn the gender of our third and last child, my husband and I joked about navigating life with a girl after two boys, or discovering we’re having twin boys. We waited for the tech to say something. Anything.

Instead, the tech stepped out of the room and returned with a doctor, and hushed voices. What I remember most from that day was being told we were to consider our options, that our “child may have a life not worth living.”

Say it out loud: a life not worth living.

The doctor spoke a language I didn’t at first understand, mentioning Trisomy 13 or Trisomy 18, or how our baby could die in-utero. My husband and I struggled to mentally and emotionally stay with him. We left the office scared, confused and lost. We would talk with three more specialists before we understood a diagnosis, Arthrogryposis, and that our child would be okay.

It has been 10 years now since Owen was born. There have been numerous surgeries, therapies, hours of research, visits to specialists across the country, and an exponent of laughter and tears. There were dark days early on when I questioned if I was doing enough. My career, my children, my marriage and everything around me seemed to suffer as I tried to balance Owen’s care against the expectations of the world. At night I would review every single decision I made, not confident I was qualified to be making any decisions at all.

But never once did I believe I made the wrong decision to bring him into this world.

Last week, I found a post making judgments about the same question about people with disabilities, about a life worth living. There were passionate opinions from parents of children with special needs sharing big and small milestones. Adults often inserted their own experiences and accomplishments, and so did friends and siblings. Within two days, though, the post disappeared. And I’m left asking why.

When I reflect back on that cold January day, I’m still angry at that doctor. Who defines what makes a life worth living? Is it an opportunity? Is it making an impact on the world? Is it being happy, or loved? What experience informed his judgment? And how do we make ours?

When you meet me, please ask if my son, born with Arthrogryposis, is leading a life worth living. I will simply show you a ten-year-old boy that is silly and sweet. A boy that lights up the room and inspires people to celebrate small things. A drummer. A coder. A gamer. The first paleontologist with Arthrogryposis. A boy who will dream and live out those dreams because he believes in himself.

I will show you Owen: he leads a life worth living.

owen

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Peg Chaidez is a digital strategist and co-founder of dream build play experience, a non-profit committed to building inclusive play spaces in the United States and Canada. She lives in Chicago with her husband and 3 sons. Her son Owen also serves as the Chief Inspiration Officer for dream build play experience. You can find her on Instagram: @mchaidez; Twitter: @amcdocumentary; Facebook: facebook.com/mchaidez and Vimeo: vimeo.com/margaretchaidez