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The 'Congratulations Project' Celebrates Babies Born With Down Syndrome

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From the earliest moments, it’s hard to imagine what anyone’s life will be like. The triumphs, the struggles, the first love, the heartbreak. New babies bring a sense of pure wonder and excitement into the world, a miracle that holds so many possibilities for the future.

Hours after my brother, Jason, was born, my parents knew something was different. The doctor came in and announced Jason had Down syndrome. This news was followed by statistics, warnings, health concerns and limitations that the doctors, and the world, placed upon him. The possibilities were stripped away, replaced with a sense of loss and fear.

This is one of many stories — families met with apologies, coping strategies and generalizations. I’ve often wondered how my parents would have felt if they knew the impact Jason would have on me, on our family, on our community. Yes, it’s hard to imagine what anyone’s life will be like. But a glimpse at the future and its possibilities can bring back hope and allow us to dream again. And that can make all the difference.

The PALS vision is built on the concept that powerful friendships between those with and without Down syndrome can change perspectives that will eventually change the world. At PALS, we hear stories of transformation every day. Campers with Down syndrome grow in independence or develop new skills. Volunteers are challenged to change their expectations or even their life trajectory after spending a week paired with a camper.

I created the “Congratulations Project” out of a need to combine these two experiences, both as a sibling who had been sculpted by my brother, and as a community member who witnessed the impact of individuals with Down syndrome every day. The Congratulations Project was an opportunity to share about the great value that people with Down syndrome bring to this world. But this wasn’t a task that needed my voice. It needed theirs.

At each PALS program, our campers are invited to write letters to new parents of babies with Down syndrome. We ask our campers to share about their lives, their accomplishments and their future. The only requirement is that our letters focus on the one word that is too often missing: Congratulations!

We collect hundreds of handwritten letters and ship them out to individual families as we receive requests. Our goal is that these letters, filled with the honest, personal words of PALS campers, will bring light and joy to new families, and all individuals across the world. The compilation in our first book, released on World Down Syndrome Day 2018, highlights just a few of the letters we’ve collected. We hope people find this book in a doctor’s office, in a hospital waiting room, on a friend’s coffee table, and when they need it the most.

We hope readers are changed by the words of our self-advocates, that they see the great value within everyone, and that the next time they hear about a Down syndrome diagnosis, they think back to these words, smile, and say “Congratulations.”

Help us celebrate World Down Syndrome Day this year by purchasing a book, or making a donation as we seek to distribute copies around the world. Visit congratulationsproject.org for more details.

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Originally published: March 9, 2018
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