When Carsten was first born a little over 9 years ago, I realized and feared the inevitable. We were to become a watched family and Carsten a watched child. Doctors, teachers, therapists, family, peers, strangers, and even I would take to observing, evaluating, and judging Carsten. It would take me years to compartmentalize these “watches,” and some days I still work on it. Trying to figure out when it’s appropriate, when to call off the hounds, and when to ignore it. It takes a certain amount of self confidence to say, “no.” It’s an art to figure out when we just let Carsten be a kid, and when we let our family just be.
Then you have the public watchers. When Carsten was a baby, I remember wondering when we were out in public if people “knew.” I wondered if they could tell that he had Down syndrome. I readied myself for people to come up to me and make small talk about him: he was lucky to have us, what a gift he would be, they grew up next door to a boy with Down syndrome, etc. Most of the time people were very kind and well intentioned. It just became exhausting. I perfected the blank stare off into space look with a kind, aloof smile. I avoided eye contact at all costs. I could have walked past the president, and not realized it. To this day, this is still my primary mode of function in public. If I walk right past you without acknowledgment, I apologize. It’s just an automatic survival skill at this point. It is like a reflex I no longer have control over.
The time that I realized that I had mastered this skill was when we took a family vacation to Hawaii. Gabe was 5 and Carsten was 2. We had gone down to the pool to spend the afternoon splashing around. The four of us were thoroughly enjoying ourselves. It was getting close to dinner, so MJ took Carsten up for a bath. Gabe wanted to spend some more time in the hot tub before dinner, so we went to relax in the hot tub. Then an older lady started up a conversation. She basically recounted to me the high points of our entire afternoon. She then talked about her amazement at MJ and I’s ability to bring Carsten all the way to Hawaii on vacation. She then put the cherry on top, “Bless you. I don’t know how you do it.” I remember being puzzled at what she was talking about, and being creeped out that she had watched us all afternoon. I just smiled confused and said, “We are blessed.” Then another guy and gal jumped in the conversation talking about our family, and how fun it was to watch us together. Again I was creeped out. What if Carsten had had a bad afternoon and been cranky….which happens to all of us. What would those people have walked away thinking? I remember walking away with a heavy heart. Gabe and I went to the room, and I cried to MJ. Together we celebrated the fact that we didn’t even take notice of the watchers. We did, however, realize that our interactions and attitudes towards each other one afternoon at the pool could define for people their personal truths about children with Down syndrome. Not only that, but even after a good experience one lady didn’t “know how she would do it.” That’s when I realized I not only can’t watch the watchers, but I shouldn’t listen either.
Fast forward to today….MJ and I have a beautiful, unique, multi-racial family with two children with Down syndrome. We are a sight to be seen and watched when we are in public. Not only have the watchers multiplied, but the voices have gotten louder. I still do not understand why our family brings out so many opinions and judgements. How do we affect them? I just don’t get it. I still struggle with my abilities to drown out the voices and opinions. Some days I am better at it than others. Some days it just down right hurts.
I also now realize that when other families go out in public with us I have to prepare their children for the stares and comments. I prep them to just smile and keep walking. It seems strange that I have to do this, but I don’t want them to be caught off guard. After all they don’t live in our world everyday, so they aren’t use to it like our children are. I then wonder what will happen to our children when they are adults. For instance, what will Gabe think or feel when he and his wife and child can go out to dinner without being a spectacle. Will he notice the difference? Will he be relieved? Will he create a family like ours out of choice? I don’t know. I don’t think he knows. It will be fun to watch. Then I will turn into a watcher. A person lovingly smiling at him and his siblings admiring the life that they have chosen. A life that makes them happy…..whatever it consists of that makes them unique and beautiful.