Thursday, March 21, 2013

A Mother's Hope: World Down Syndrome Day

Today, March 21st, is World Down Syndrome Day.  Chosen because 3/21 signifies the three copies of the 21st chromosome that are responsible for Trisomy 21 (Down syndrome), it is a day when those who love someone with Ds and those that have Ds shout it from the rooftops:   

Down syndrome is natural!  Down syndrome is beautiful!  My life is enhanced by Down syndrome!

These are messages that I, too want to share.  They are things that I've said before and that I hope I convey often.

Yet, as I celebrate my third WDSD, the thought that keeps coming back to me is that for all these pronouncements, for all this awareness, there is still so far to go.

A couple of weeks ago I had an experience so familiar to parents of people with Down syndrome.  Someone in the periphery of my life confessed their admiration for me.  He went on to tell me that there are so many people that would have chosen not to walk this path that I now live; those who would have given it all away.  He went on to talk about how knowing that there are people who "are worse off and who have it harder" inspires him to live his own life fully. 

And I know he meant well.  But that sentiment: that I am one of those that is worse off because Cora is in my life; that stung.

The fact is that Down syndrome is still seen as something to pity.  Those who truly love a person with Ds are still seen as heroes.  Our exclamations that we love our children and that they are worthy of that love is somehow not quite believable, even as they ooh and aaah over the adorable photos of our adorable children. We want the world to know that our loved ones are smart, are funny, are interesting; are in truth, full and incredible human beings.  But sometimes getting this truth out into the world seems like a long hard road.

And that is what I would like to see change.

I know that my child is seen as an other.  I see it on strangers' and acquaintances' faces, though she is only 2 years old.  I know that my child is part of a group of people that are still considered acceptable to marginalize.  Heck, as much as it pains me, I know that many people don't even see her as being fully human, fully worthy to be living this life that she lives.

And in this process of being her mother, I've become something of an other too. I am a Down syndrome mother. 

Strangely, although people-first language is supposed to apply to those with a disability, it does not apply to those who love them or raise them.  For some reason it is still acceptable to define me by the fact that my child has an extra chromosome.  Not simply a mother, but a special needs mother.

As much as I'd love to be just another mother, and as much as I wish that my daughter's own differences didn't set us apart, it still seems that the world just isn't quite there yet.  Until differences are seen as part of the natural and normal web of life, we're not there yet.  Until words that were once meant to describe people like Cora stop being thrown around lightly to describe anything stupid and worthless, we're not there yet.

Sometimes this seems so daunting and so impossible.

But the rest of the time, I am simply and completely blown away by what I am learning as I walk this path.  Despite the challenges, the fears and the worries that I battle now and then, this is a life of joy and of love.  It's a life I wouldn't trade for anything. The lessons I've learned in the past two years have shown me how important it is to widen my focus and learn to see the value and importance of every human being.

And so, as I observe and celebrate today, I hope deep in my heart that in this life I will be witness to a shift in perspective.  I hope that this enormous community effort to raise awareness of people with Down syndrome and others who are differently-abled can help to bring about the understanding that all people are different, and that difference is natural, valuable, necessary and something to appreciate.

I hope that my daughter will be able to live her life in a world that continues to change and evolve and that accepts her as a whole and valuable human being.  I hope to be a part of this change.


  1. Love this post! Our babies are wonderful and NOT a mistake and they sure don't make our lives miserable. I think we've come so far with how the world sees people with DS but still has a long way to go. One day at a time!

  2. You are 'just a mother', but an awesome and fantastic one, at that! we love you, sweetie ;-) nick

  3. Perfectly written Leah! Happy World Down Syndrome Day!

  4. "The fact is that Down syndrome is still seen as something to pity. Those who truly love a person with Ds are still seen as heroes." Ah, yes, there is the rub. I really think you would love Emily Rapp's new book, "The Still Point of the Turning World." Emily herself had congenital birth defect that resulted in the amputation of her leg when she was 8, and her son recently died of Tay-Sachs disease, and in her life she has often found herself called a "hero" for "enduring" these "conditions." She grapples beautifully and brilliantly with the moral, philosophical and ethical implications of this line of thinking in her book. In any event, a beautiful post, Leah.

  5. One year later, I am reading your post. Enjoyed it just as much as last year!


Thank you for sharing your thoughts with me!