This is officially the last day of Down Syndrome Awareness Month.
Six years ago I didn't know Down Syndrome Awareness Month was even a thing. And as I sit here and reflect on our 5th Down Syndrome Awareness Month I find myself grateful for skinned knees.
I'm sure I sound a bit crazy right about now. What in the world does skinned knees have to do with Down Syndrome Awareness Month? For me, skinned knees means the world. It means joy and ability. It means inclusion and resilience.
Let me explain.
Five years ago I gave birth to a beautiful baby boy. And to be frank, I was scared sh*tless. Scared about what that meant for him. Scared about what that meant for my husband & I. Scared about our future. I had no idea what our future would even look like.
How I wish I could turn back time and sit down with myself and say "Honey there is no need to cry! It's going to be okay. In fact, it's going to be more than okay! It's going to be "normal" and crazy and beautiful."
When Alvaro was six weeks old, a friend said he'd be running circles around his brother in no time. Do you know what my first thought was? "Oh, she must not know he has Down syndrome." I tried to break the news to her. She looked me square in the eyes and said, "I know he has Down Syndrome. Let me tell you, in a few short years, he will be running circles around his brother."
You know what? She was right.
I sat next to Alvaro in the car a few weeks back. We had evacuated our home hoping to escape any harm that Hurricane Irma would bring. As my brother in law was driving us to a local park where he lives, I looked down at Alvaro's knees. They were skinned and scabbed over in 3 different places. I sat there staring at those skinned and scabbed knees and tried not to cry. I had tears of joy and stupid grin stretching from ear to ear.
You how Alvaro got skinned knees? By being a 4 year old. He got them playing on the playground with his friends. He got them chasing his brother down the street. He got them running from me after taunting me with the words "You can't get me!" and running away with peels of laughter and squealing.He got them being happy and running circles around us.
Alvaro, just like almost any other 4 year I know, skinned his knees because he was playing and being a kid. Down syndrome didn't even factor in the equation. It was an irrelevant factor in this story.
When Alvaro was born, all I saw was Down Syndrome. I didn't know what it meant and I feared for myself and my child. I expected him to have a slower progress. I didn't expect to have a boy with skinned knees because he never stops moving and has the energy of 5 gym instructors combined.
I didn't expect things to feel and be so ... normal. Yet here I was, sitting next to my kid on our way to the park, looking down at a pair of skinned knees. A typical feature for a 4 year old.
Down syndrome isn't an irrelevant part of Alvaro's life. Not anymore than being Latino or a boy is an irrelevant part of his life. Down syndrome does add some challenges in his path. Some that can be easily overcome and others that will take years of therapy.
But the words Down syndrome do not define or describe him. It's part of who is he, part of his genetics and make up, but not the definition of who is as a person.
Who he is as a person is a fun, sweet, mischievous 4 year old with a penchant for running and the occasional accident that leads to skinned knees.