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As I write this, there are just a few minutes left of March 21, or 3/21, World Down Syndrome Day. In between the many activities of this busy Saturday - Hope's music class, the Chesapeake Down Syndrome Parent Group spring welcome social, dinner with my parents, the City Neighbors Charter School 10th anniversary gala - I thought a lot about what I wanted to say about it. Some of my ideas seemed too simple to be worthwhile and others too complicated to do justice. But I'm going to try.

It's simple: People with Down syndrome have three 21st chromosomes instead of the more typical two. And that's complicated: This arrangement means there are some fairly predictable challenges (like slower speech acquisition, low muscle tone, and sleep apnea) and some unpredictable challenges (I can't list any because they are, you know, unpredictable) - and they require an army of experts, therapists, doctors, and other parents to navigate.

It's simple: When you have a child with Down syndrome, there is love, laughter, frustration, fun, worry, learning, stumbling, mistakes, joy, growth, wonder and mundanity - just like there is with every child and in every family. But it's also complicated: In the Ds community, folks like to say "more alike than different" and that's true - but some aspects of the difference can be really difficult. There are more likely medical challenges (heart defects, feeding issues, and, of course, leukemia), and you have to learn to advocate firmly and occasionally fiercely to ensure your kid gets what she needs.

It's simple: Every person deserves respect. But for some reason, this is complicated: People with Down syndrome continue to struggle for inclusion in society in schools and workplaces, in movie theaters and restaurants. Their civil rights battles are still being waged - to make independent decisions, to earn money and still have health insurance, to vote. 

It's simple: We set this day aside to remind the world about Down syndrome, what it means and why it matters. But that is a complicated mission: People with Down syndrome are as varied as the rest of humanity - of all races and ethnicities, social classes and religions, with countless talents and interests, navigating the same world, feeling the full complement of human emotion. They cannot and must not be reduced to either inspirational stories or a disease paradigm. 

Hope has Down syndrome. It is part of who she is. I can't tease apart all the strands so I celebrate Down syndrome today and every day.

Hope and Loyola volunteer Devan at the CDSPG Spring Welcome Social, March 21, 2015. Photo credit: Sarah Ridgway