Happy Down Syndrome Consciousness Month to all of you in the Philippines from my Benny and I here in the US!
I had Ben in August of 2013. He was born with big, beautiful, Brushfield spotted blue eyes and the most perfect chubby little face I'd ever seen. We knew he would be born with Down syndrome, and while it was a shock, by the time he was born we were ready for the journey we had been given!
It wasn't long after he was born that October was upon us. October in the US is Down Syndrome Awareness Month. I remember really thinking about what that meant at the time in a way I never thought of it before. I had done countless walks, runs, etc to raise awareness for many causes such as Breast Cancer, Alzheimer's Disease, and more. I had attended charity functions, fundraisers, and the like. I had also forwarded posts and pictures my friends asked for me to spread bringing awareness for things like Type 1 diabetes. I had done these things, but I am ashamed to admit that I don't think I ever really knew why I was doing them. I found myself, holding my beautiful two month old baby boy in arms, reflecting on what exactly "AWARENESS" or "CONSCIOUSNESS" really means.
The day I was told Benjamin would be born with Down syndrome, I was devastated. It felt like someone had told me that the child I was carrying had died. I know this sounds horrible, and I hate that I felt that way, but it is true. I was crushed. Every hope and dream I had for my baby felt as though it has slipped away with those two words... Down syndrome.
But Why? Why did I feel that way?
At this point in my life if you would have asked me if I was "aware" of Down syndrome, I would have of course said yes...and this would not have been true. Sure, I knew someone with Down syndrome. I saw it on TV, in movies, and I read the clinical definitions, but I was not aware of what it truly meant to have a child with Down syndrome. I had no clue.
Awareness isn't about facts and figures. Awareness isn't about potential medical problems, or soft markers, or therapy styles that help best with hypotonia. Awareness isn't about a cute meme with an almond eyed beauty that says, "I can do anything!".
Awareness is about spreading a true understanding that having Down syndrome plays no part in the value an individual brings into our world.
I have made it my goal to spread awareness the best I can by sharing Benny with the world. I want the world to see him for who he is. I want them to see my family and the smiles he puts on the faces of everyone around him. I want them to look at my sweet boy and no longer be afraid if they find themselves in a doctor's office one day and hear the words "Down syndrome" uttered.
We spread awareness and consciousness so the rest of the world can see the beautiful light that shines from within those born with or without an extra chromosome.
Enjoy this month my friends, and TELL YOUR STORIES!!! Scream them loud and proud to the world until they have no choice but to listen. Make them see the beauty in being different.
God knows...if you open their eyes just a little bit...they will have no choice but to be overwhelmed by it.
I know I am every day.
 |
| Photo by www.angelahibbertphotography.com |
xoxo
Jamie
