At the inception of this blog, I promised to be honest about my feelings – good or bad. I have often used this as an outlet for my emotions. In a way, this blog is my journal. I write for those that read Our Journey Through Life but mostly, I write for me.
Sometimes, I write just to share. I love sharing our family with those that are interested and/or stumble across this blog. Other times I write to encapsulate a memory. It’s a way to keep track of all the (mostly) wonderful things that happen in our lives (and gets me out of having to write much in the baby books!). Many times, I write a blog post to help me process. As I write, the feelings reveal themselves and I work through them.
As much as I hate to feel this way, today I am writing because I am a little bummed, for lack of a better word. We went bowling today. Half way through our second game, a family joined us in the adjoining lane. They had a teenage son with them whom I suspected had Down syndrome. I found myself hesitant to say anything because I just wasn’t 100% sure. And why did I really need to say anything anyway? They were having a good time and I enjoyed watching him interact with his family. As Eli waved and smiled at them, I wondered if they knew that he had Down syndrome. Again, this is where the secret handshake would come in handy! When we were packing up our things to leave, the mom said to me, “Where do you guys live?”. Kind of confused, I told her and then she said, “Are you familiar with the Down syndrome community?”. Well, there it is. She knew. She didn’t ask, she just knew. I left wondering what it was about Eli that made her so sure he had Down syndrome. As we drove home, I was so conflicted with my feelings. Who cares that she knows I thought to myself. It’s not like it’s something we’re trying to hide. I guess I was just a little shocked. She was just so certain that she didn’t even bother to ask subtly.
I’m not sure why the unsettling feelings arose in me after that encounter – But, they did. So now I’ve spent half the night obsessing over why. I am so proud of Eli and everything about him – His extra chromosome included. Who cares that his features gave him away? Why does it matter how she knew? But it does matter to me. And I don’t know why.
One of the very first things I said when Eli was born was, “Can you tell?”. What I meant was, can you tell he has Down syndrome. I am so ashamed of that. My newborn son was struggling for breath (I wasn’t aware of that at the time – I thought they were just checking him out) and I was worried what he looked like. I can never take those words back. Never.
Here I am, almost 16 months later, and that ugly, shallow voice inside me has returned. You can “tell”. People know. Apparently, it’s obvious. Now he can be pre-judged with automatic limitations put on him. He can be a stereotype to people. I DON’T WANT THAT! I have lived in this blissful world of baby oblivion. I want to stay there. Sure, my son has a therapist come over each week to help him learn to crawl, stand, walk, talk – but therapy has become just a part of life. We are blessed with therapists who NEVER tell us what Eli can’t do but constantly tell us what he can, and WILL, do. I don’t want to deal with the other stuff. I really, really, don’t.
I know that mom at the bowling alley today was just trying to be supportive. She invited us to an upcoming event. She was reaching out to us and I turned it into so much more.
It may be time to go back and take the advice I once gave my pregnant self. Stay in the moment. Don’t worry about the future, the what if’s, so much. Everything will be ok.
Sometimes, feelings surface that we just don’t understand. Today is one of those days. Not every day will be a glass half full kind of day. Some days, you fill that glass with wine, drink it dry, and fill up a new glass tomorrow.
Eli has 47 chromosomes and he was called out on it today. So what? That extra chromosome just makes him extra cute!