World Down Syndrome Day

Today is a special day in the lives of my family. It's also a special day for millions of people across the world. March 21st is celebrated as World Down Syndrome Day. Why March 21st? Because March 21st is also written as 3/21. The most common form of Down syndrome is Trisomy 21, which is a third copy of the 21st chromosome (where there is normally only a matched pair). Tri (3) somey 21 or 3/21 or March 21st! If you'd like to learn more about Down syndrome (like why the 's' in syndrome isn't capitalized), there is a great FAQ found at https://www.globaldownsyndrome.org/about-down-syndrome/facts-about-down-syndrome/#freq.

Down syndrome

Why is World Down Syndrome Day such a special day for my family? Because my son has Down syndrome. It's further made special because it occurs only 4 days before his birthday (3/25). We didn't know he had Down syndrome until after he was born and that meant all of our learning about the condition came in a rush shortly after he was born. One of the most helpful and touching resources I leveraged was the book Roadmap to Holland. This book was recommended by the nurses that were caring for my wife and son after his birth. It was a godsend.

Another resource we've continued to use is the book My Friend Has Down Syndrome, which we always give to his new class in order to start the conversation and provide the other students appropriate context for his condition. There are other great titles curated at this Mother's site.

So, I use this day each year for two primary purposes:

  1. To begin several days of celebration of my son's life, culminating in his birth day on the 25th
  2. To reflect on his life, condition, the progress he's made over the last year, and to remind myself of all the special gifts he has, that he probably would not have, had he been born typical

Gifts

Fearless. In his six years of life (almost 7) I have only seen my son afraid of one thing: people in character costumes. I'm not sure why this is his one fear, maybe it's the sudden reality of characters he watches on screen being six-feet-tall in front of him, but he doesn't like them (this is a big downer at Disneyland). However, his fearlessness can be frightening as well, like the time he jumped into the pool without his water wings (and he can't swim). This is something I don't see in a lot of typical children. They seem to have lots of fears and unwillingness to try new things. Not my son, new is his typical.

Friendly. Warm. Loving. Accepting. This goes to his general demeanor that he's never met anyone he didn't like. When we first meet people, his greeting is always a hug and he's always excited to meet them. This catches a lot of people off-guard, but then I watch their faces and you see them having a better day right in front of your eyes. His impact on the people around him is palatable.

A higher power. I'm not sure how else to explain this, but my family has been in the grocery store, with my son riding in the cart. Someone will approach us and say "hi" to my son and he'll then reach out to hug them. This is done in a knowing way by him (it doesn't always happen) and one time the woman started crying. Her brother, who had Down syndrome, had died recently and when she saw my son, she just needed a hug. He knew this is what she needed and he provided it. I've watched this connection with him happen to stranger after stranger and I'm now at the point where I just accept it. He has knowledge that is beyond my comprehension and is in tune with energies I cannot perceive.

We're all people

Over 30% of the people in the United States know someone with Down syndrome. My personal suggestion is to actually get to know them. These are remarkable people that have so much to teach us in our personal lives. In today's world where people are singled out, or feared, or shunned, knowing someone that treats everyone as a friend is a gift. We're all people, we all breathe air, we all enjoy a sunny day, we all have more in common than we have different. Focus on our shared sameness, not on our specific differences.

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