Saturday, May 11, 2013

Why Raise Awareness?

Today is National Cornelia de Lange Syndrome (CdLS) Awareness Day.

I can't remember when exactly the first time I heard about CdLS Awareness Day was, but it was sometime shortly after Ella was diagnosed. I'm going to be honest.. my thoughts about this day were not positive. I was completely shocked that there even was such a thing as a CdLS Awareness day.. I mean what was there to bring awareness to? It's not like October's Cancer Awareness month where early screenings are promoted to increase health and survival rates. Or the March of Dimes, where prenatal care is emphasized to decrease premature births. I mean, those causes have something that can be done to potentially prevent them. There is nothing to prevent CdLS. Nothing I could have done differently in my pregnancy to change this. There is no cure. No medicines that can make it go away. You don't recover from it. It's something that just happens. Something we learn to live with. So why are we raising awareness?? What for?

The news of this Awareness Day also came at a time where the letters CdLS tasted like vinegar in my mouth. I wanted to spat those sour syllables out and get rid of them as fast as I could, not promote and talk about them more. I didn't even want to talk to my close friends and family about CdLS, why in the world would I want to promote it to people I didn't even know? Why was it their business? CdLS was not something I wanted to brag about. Or show off. It was not high on my life's resume of accomplishments. CdLS was something I wanted to hide from the world, to pretend never happened. CdLS was a menace to my life. Something I never wanted, never asked for, never wished to acknowledge.

Bring more awareness to it? No thanks..

But then I started to learn more. To meet other parents online. And I started to get it. I saw their strength. And I grew from witnessing their acceptance of this thing I wished so badly away. And I was amazed. And humbled. And slowly I began to realize that there just might be more to those 4 little letters than I first thought. That maybe hidden beneath the guise of disappointment and despair were many blessings waiting to abound. And I began to understand why people wanted to raise awareness for CdLS.

Because our children are not a menace. Or a disappointment. Or living a life of despair. Because our kids are just that. Kids. People. Human beings. With the same kinds of wishes, desires and dreams as the rest of us. And the world deserves to know that.

I think one of the main reasons for CdLS Awareness Day (to me at least) is to show the world the many differences that make us all beautiful in our unique way. To bring to light the fact that even though our looks may differ and our ways of communicating may not be the same, we are all part of a much bigger picture. A picture where there are arcs and lines, neat round dots, and splats of messy paint. A picture that combines darkness and light, mounds and divets, and textures of every kind. A picture in which there more colors combining together than you could possibly imagine. A picture that could never be duplicated, for the most breathtaking thing about it is the amazing display of diversity.

Sadly, there are many people in this world who look down on others who look different or act different than them. Raising awareness for CdLS can potentially help our children adjust to this world. Or maybe more importantly.. can help the world adjust to our children. The more people that know about the syndrome and its characteristics, the less rude comments and silent heartbreaking stares families like ours will get when out in public. Raising awareness of this rare syndrome increases acceptance and understanding and helps people understand not only the differences in our kids, yet their amazing potential and determination.

Another point of CdLS Awareness Day is to do just that. Bring awareness. It is estimated that there are thousands of people living with CdLS who are either undiagnosed or misdiagnosed, therefore possibly not receiving many services they need and deserve. Looking back, I suppose we were lucky that it only took us 6 months for Ella to be diagnosed. Some wait much, much longer. CdLS is such a rare syndrome many doctors are not even aware of it, making diagnosis very difficult in some cases. I know for many of the doctors we see, Ella was the first case of CdLS they have ever seen and many have had to research and learn along with us. The hope is that the more educated the public and doctors become, the more diagnosis will be made possible and the quality of life for many will be increased.

I'm so thankful I finally came around to accepting CdLS and it's Awareness Day.
Because the last reason we raise awareness for this syndrome?
Our kids are just too stinkin cute to not have their very own day for us to brag on them!!

Happy CdLS Day Ella! I hope you had a great day of getting absolutely everything you wanted..
Soooooo pretty much like every other day. :)


  1. Nice post Maria, very well stated. And Miss Ella is certainly the first little one this OT has met with CdLS, and no I hadn't heard or it before :) Thanks for letting me learn along with you as well!

  2. WOW! It took me about 10 years to get to the point of understanding what you found out so quickly. Thanks for sharing this... and I just sent it on.

  3. Thank you. You just. raised my awareness.
    And she's precious.