Down Syndrome Awareness Month: Why It Should Matter to Everyone

October is Down Syndrome Awareness Month!

When I first learned about this month (after Kate was born), I didn’t think too much of it. After all, most people are “aware” that there are people born with Down syndrome. Most know the physical characteristics commonly associated with people with Down syndrome. It’s the most common chromosome abnormality in humans, after all.

But very quickly, I realized that’s where the awareness ended. Even for some doctors. For “medical websites.” For some people who work in the special needs community.

Knowing something exists is far different from having a true understanding. It’s like seeing pictures of the Eiffel Tower vs. taking pictures from the top. Like watching a romantic comedy vs. falling in love. Like walking into a Babies R’ Us vs. holding a sleeping newborn.

There are all sorts of smart sources out there with updated, educational information about Down syndrome—and I’m so thankful that Kate is living in a time of limitless possibilities for those of all abilities. But we still have so far to go.

Because we also live in a time where the majority of mothers who receive a Down syndrome diagnosis choose to terminate their pregnancies. And no matter what your thoughts are on this incredibly sensitive subject, why is it that this is the best time to live with a disability after birth, but the worst time to have one in utero?

I chalk it up to fear. And I have great compassion for that fear. I held my newborn daughter with that same fear when she was diagnosed at birth. We fear what we don’t understand.

That’s why we need more than just facts—we need faces. We need to meet them, get to know them, understand them. Hug them, talk to them, laugh with them. We need to be more than just aware of Down syndrome, we need to understand those who have Down syndrome.

Why should Down Syndrome Awareness month matter to everyone? Because we all have differences that others might be afraid of. And working toward the inclusion and acceptance of those with disabilities means inclusion and acceptance for all of us.



  1. Kimberley

    Thank you for this post. My second born, Kate, now a year old, was also diagnosed with Ds at birth. I’m still trying to find my place in all of the Ds community and figure out my level of involvement in things. So this post was so helpful to me. Thank you for taking the time to write. I love reading your blog. You’re pretty funny, very wise, and just someone I’d love to hang out with. Congratulations on #4. I’m curious…if you wanted a blog post idea: What transition has been the toughest so far? 0 to 1. 1 to 2. 2 to 3. Or do you think it will be 3 to 4? :)

    • I think every stage has it’s challenges, the learning to feed, or walk, or starting Kindergarten and then school. Surgeries are the toughest time for us. But each is wonderful too. Enjoy and congratulations x

  2. So glad to have found your lovely blog via #DSAM2013 on Twitter. I’m a kindred spirit from the UK, pleased to meet you.
    I’ve popped your blog in my feed reader so hope to catch up again soon. Keep going for our kids x

  3. Lovely and powerfully put. Yes. Yes. Yes. And with that- it’s good to meet you and your lovely daughter’s face. I’m Cole- and my middle daughter- Abigail has Ds as well. She’s 4.5 and a wonder. This month I’m making my way around the blog world to meet some more of the families. xo

  4. This is our baby girl Emma Grace. She is 5 months old and we could never be more blsseed. We didn’t know she had DS until she was born. I won’t say it wasn’t hard and that we weren’t sad but it’s true: hindsight is 20/20. We have no reason to be sad. So far Emma has achieved all her milestones, she is no different than her big sister as a baby. She has a VSD in her heart we are watching closely but other than that, she is simply perfect (not to mention beautiful). When she was born all I could look at was her hair (it is so long!) Our babies were put on this earth for a purpose and God has a plan for every single one!

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