Down syndrome is. It. just. is. It's tangible, unchangeable, real. It is our reality and the reality of our children and loved ones, and no matter how much we may rue some of the aspects of Down syndrome, we celebrate and embrace so many others.
I've read, both on the Down syndrome Babycenter message boards and on other people's blogs in the last few weeks, people questioning when. When will they be "okay" with Down syndrome? When will it stop being the first thing they see when they look at their children? When will their children be "normal" and more like their typically-developing peers?
I reiterate...Down syndrome is. At first, in the beginning, I think I can safely say, pretty much all of us live and breathe it. It's what we see when we look at our new children. It's the first thing we think of in the morning, the fear of the future creating a large, iron ball like a huge fist in our stomachs, the last thing we think of at night, set to punctuate our dreams with uneasiness. And the time in between? Sadness. I spent many a bottle feeding crying in my rocking chair, baby blissfully unaware.
I thought I saw Down syndrome everywhere. It was present in the person whose back and shoulders I saw turning a corner, in the new babies I saw being pushed in strollers by their mothers, in the background extras on a television show. Who knows, maybe I did! But, more likely, I probably didn't.
With time...TIME...the reality took more of a back seat. Oh, Down syndrome was still there, but did I see it everywhere?
My brain, once again, became crowded with everyday banality, the trivialities of this, that and the other thing that come up to occupy the space. The day in and day out of being a mother, of working a full-time job, of being me.
6 years into this adventure Down syndrome still is. It. just. is. I'm involved in my local DSA, I read blogs, am friends on Facebook with countless others whose lives have been touched by it...
But when I look at my daughter, I no longer see it.
I see a precocious 6-year old girl, one that has a brilliant sense of humor, is smart, sweet, stubborn, silly, and has a smile that can light up the world. Do I sugar-coat our lives on my blog? Eh, that depends. Because I don't. see. it. My blog usually details some of the ho-hum, regular, every day things that we do. These things do not center themselves around Down syndrome. Am I shouting about how proud I am that she's hit a particular milestone? Am I frustrated on occasion about something she can't do, or about a challenge we've had with something that is as a result of one of the aspects of Down syndrome? Sure. Because Down syndrome is still there. My photos and stories are of my little girl enjoying her life, learning new things, having new experiences. If that means that I'm sugar coating stuff, ignoring Down syndrome, so be it. Why should I show the dust bunnies under the bed, the unkempt hair, the burnt toast? That's not what it's about.
And so, in the absence of Down syndrome from the surface of our day-to-day existence, while it still lives there, we move on. We live our lives. We do what we have to do to keep things running at the necessary pace. We do what we want to do to enjoy ourselves and be productive. We wake up, we go about our days, we go to sleep, we start it all over again. We do not, any longer, live and breathe Down syndrome.
It's there because it is. We are who we are because we can be.