World Down Syndrome Day

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The following was originally posted last year on World Down Syndrome Day.  Reposting because it still holds true.

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Today, March 21, marks the ninth annual World Down Syndrome Day, a day now recognized by the United Nations as a day of awareness and celebration of Down syndrome all over the world.

There is a lot of pressure on us parents of children with Down syndrome, on us advocates, to advocate our hearts out today – to raise a flag, to shake our fists, and to say something profound.

Frankly, I’m weary. Weary that we’re still fighting the same fights for compassion, respect, and inclusion. Basic human dignity. Weary that behind the scenes, we have trouble agreeing on what, exactly, we should be advocating for.

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All I want is to raise my kids in a world that’s going to see all of them as valuable human beings. All I want is to be able to go somewhere – anywhere – without constantly being on edge, waiting for someone to drop an R-bomb. All I want is to be able to take my kid to the doctor’s office and not have to educate them about Down syndrome facts and myths. All I want is to be able to count on my kid being welcome to attend the same school his siblings attend. All I want is for people to see my kid as a kid – yeah, a little different, but not some lowly or otherworldly creature who should be disdained or fawned over. All I want is for people to see me as just a mom – one who is defined far more by the sheer number of kids she has than by the fact that one of them sports an extra chromosome.

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I wonder if there will ever come a day when our advocacy will no longer be necessary.

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10 Responses to World Down Syndrome Day

  1. Nicole March 21, 2014 at 4:30 pm #

    Cheering for you (and Finn) until that day arrives. xox

    • Lisa March 21, 2014 at 6:20 pm #

      Thanks, Nicole 🙂

  2. Deborah Mitchell March 21, 2014 at 9:19 pm #

    Me, too. I’m cheering for you and Finn, too.

    “All I want is to raise my kids in a world that’s going to see all of them as valuable human beings.” These are powerful words, Lisa. Through this and other things you’ve written, you’ve really educated me on DS. Until I read your posts, I had no idea of all the struggles some parents face–and I have been talking to my teen to make sure he has awareness now, too.

    • Lisa March 21, 2014 at 9:26 pm #

      I love this – thanks, Deb.

    • Lisa March 21, 2014 at 9:27 pm #

      I think one of the most gratifying things of all for me has been when people tell me that things I’ve written have changed their perspective, and that it’s inspired them to talk to their kids. Really, it just means so much.

      • Deborah Mitchell March 21, 2014 at 9:30 pm #

        Thank you, Lisa. Your advocacy helps all of us. You are a great mom.

  3. Asha March 22, 2014 at 12:34 pm #

    Definitely changed my perspective and gave me an insight. Before, DS was a theory to me. I knew only the stereotypes- through Finn’s journey I learned so much!
    Our kids’ schools are very inclusive and proactive.
    Funny thing, my DD Chloe who is 8 has always been saying that she wants 10 kids. Recently she changed her mind and said: ” I want about 6 kids, but I want one of them to be special needs” I asked her “how come” and she said that there is a DS girl on her bus, Hannah and she is really nice.
    I thought that was sweet. I also told her that you don’t get to chose to have a baby with DS unless you adopt.
    My other DD had the- wear lots of socks day- at school yesterday.
    I think the next generation is growing up with more awareness and knowledge, the world is definitely changing.

  4. Marl March 22, 2014 at 7:46 pm #

    I think you speak for the rest of us who have children with a ‘difference’, whether it be DS or Autism, as is my son’s ‘difference’. Though my son is now an adult, I continue to feel like I am walking on eggshells as we navigate a society that appears to have an even greater fear for ‘difference’, especially in the aftermath of 9/11 and in what appears to be a fear-driven age, by those who judge our childrens’ behaviors to be socially off, and suspect. As parents, we were given the role in helping to guide our children to the best outcomes possible, while we educate others along the way. It is a necessary, dual role we have in trying to pave a way for our children to live as inclusive a life as possible. I don’t see this ending any time soon.

  5. Joolzmac April 1, 2014 at 7:51 am #

    Finn is going to do just fine, with a smile like that lighting up the world! Gorgeous boy!

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  1. Down Syndrome | Kids Without Religion - March 21, 2014

    […] like to share this wonderful post she wrote about World DS Day. I hope she will enlighten you, too. IMO, awareness is a huge step in […]

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