When it comes to Down syndrome, there are two extremes that get represented in our collective imagination most of the time. There’s the exceptional overcomer, and there’s the burden to society. There are lives that our culture says are worth celebrating because of their remarkable achievements. And, says our culture, there are lives that don’t exist because of the assumption that those lives are not worth living.
But the reality for the vast majority of individuals with Down syndrome is something far more ordinary. Ordinary health concerns. Ordinary feelings of rejection. Ordinary relationships of love. Ordinary irritation with family members. Ordinary needs for help. Ordinary excitement about TikTok and celebrities.
Our daughter’s life does not need to be exceptional in any way in order for it to be a life worth living, a life worth protecting, a life worth celebrating.
As Heather Avis puts it so well in writing about her daughter Macyn:
There are so many tasks society has tied to our value and worth, that Macyn can’t do. But what she can do is show up in this world unapologetically as herself, as a person with Down syndrome. She can see your value and worth and embrace and love you exactly as you are. Her life is an invitation to question the harmful ideologies of this “do more – be more – made for more” hustle culture which has us constantly tripping over comparison, feeling miserable about ourselves and cynical about each other. In other words, she is doing so much good for the health of our collective humanity by being nothing more than a kid with Down syndrome.
This Down Syndrome Awareness Month, I am celebrating people with Down syndrome for their ordinary lives that remind us of the wonder, beauty, and belovedness inherent in each and every one of us as we are.
More with Amy Julia:
- Book—A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny
- Free Resource: Missing Out on Beautiful: Growing Up With a Child With Down Syndrome
- Penny Sharing in Church for DSA Month
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