Why ‘World Down Syndrome Day’ Matters

3/21 is recognized as World Down Syndrome Day, chosen as Down syndrome describes the condition where a body’s cells contain a 3rd copy of the 21st chromosome. This trisomy has been around since the beginning of time, crosses all racial, socio-economic, and cultural barriers, is not contagious, and cannot be ‘cured,’ prevented, or predicted.

But one quick look around today, and it’s impossible to deny that this is not our parents’ Down syndrome.Maggie raking

The best advice I received after having Maggie came from a guardian angel/pediatrician who told me to start planning for a ‘normal’ life for her. “Her only limitations will come from your expectations. Start saving for college. And a wedding. You canNOT look at a 50-year-old person with Down syndrome – if you can find one – and think that’s what’s in store for your baby. We’ve come too far. You can’t look at a 20-year-old and plan for that level of ability. In fact,” and he made me look him in the eye, “you canNOT look at a five-year-old child with Down syndrome and think that’s where Maggie will be. We’ve conquered the ‘quantity’ of life for these kids and are beginning a new world of ‘quality’ of life for them. She will go to school, make friends, read, work, live independently, if you guide her that way. She needs you to hurry up and get over this so you can help her do everything she wants in her life.”

I never looked back.

Maggie will be 15 this summer. She will go to high school in September. She reads, commands her iPad, enjoys full-on conversations, swims competitively, and loves to cook. She complains about chores that interrupt her fun, argues with her siblings, wears braces on her teeth, and leaves her clothes on the floor. She doesn’t like Justin Beiber anymore. She wants to drive. And kissing is gross. The fact that she has Down syndrome is rarely part of the equation.

It hasn’t always been easy. But with four more kids, I get that every kid has his problems. (Thankfully, usually not more than one or two at a time!) And I’d be lying if I didn’t admit that there are times when the worry about how the world will treat her rears its ugly head and scares me beyond reason.

But that’s the point of World Down Syndrome Day. It’s to let the world know that my daughter is a real person. She has intelligence, and compassion, and a great sense of humour. She has so much to contribute to our world; and the world is a better place with her in it. She, and others like her, are beating the stereotype, breaking new ground, and proving that the world needs to rethink its attitude toward the ‘underestimated’ population.

Having kids changed my life. Having Maggie changed me.


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