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My Daughter's Life With Down Syndrome Is a Life Worth Living

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I know there are people who might look at my daughter and hope they never have a child like mine, a child with Down syndrome. They might assume her life is hard, but my daughter’s life is beautiful. She lives to the fullest. Her life is worth living. When I look at her, I feel so thankful she is mine. I cannot imagine my life without her.

I know having a child with Down syndrome might seem scary. I thought so too, once upon a time. I was terrified when doctors first spoke the words “Down syndrome” to us. It felt as if it was all a bad dream. The baby I carried inside my body was so much a part of me, yet Down syndrome felt so foreign and “wrong.” Her birth confirmed her diagnosis, and I had to face the stereotypes and ignorance I held. There were tears. I shook my fist at God. Why us? Why our baby?

It is hard to understand or make sense of something you have never experienced.

Having a child with Down syndrome was not what I imagined it to be. Although we had friends who had a child with Down syndrome, it was different when this became my experience. When it was my child.

Being a parent is something you truly don’t know until you become one, no matter how much childcare experience you have. It is different when the kids are yours.

Having a child with a disability is like that. You don’t truly understand it unless you experience it.

But there is beauty, and joy, and holy moments that take your breath away — the moments that make you recognize Down syndrome is simply a diagnosis, and the value and beauty of life is found in the person, the individual, not in their abilities or IQ.

I understand now.

Down syndrome is not just a diagnosis. Down syndrome, to me, is part of who my daughter is. A part of her I love and cherish.

The beauty of her life mesmerizes me. The joy she has brought into our lives knocks me off my feet. The love she has brought to our family envelopes us each day.

I know some people think Down syndrome is scary, or bad, or tragic. I thought so too, because I didn’t know any better. But I know now.

And this I can tell you with full certainty: my daughter’s diagnosis of Down syndrome is not the fire that burned us, the flood that drowned us, the earthquake that buried us. She is the wind that pushes our sails, the sunlight that brightens our day, and the rich earth that made us bloom.

My daughter’s life has value. It is rich. It is full.

She is life. She is love.

She is mine.

Originally published: March 19, 2018
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