I've been having one of those weeks. The kind where Down Syndrome has me down.
It's been a while since I've had one, mostly because we've been rocking Down Syndrome these past few months (Who hasn't had to wash a bottle in a week since her son learned to drink from a straw?! This Momma! Holla!!). I kind of hoped that maybe I had passed the point of being reduced to this place. But, no. Here I am, crying at my keyboard, needing to get the words out of my head.
It started last weekend, when on a quick trip to Target (an oxymoron, I know) to buy a new, bigger car seat for our growing Sam, I happened to walk past three adults: a mom, a dad, and a grown son. They were hunting for a check out line, and he was trailing behind them. Probably in his early twenties and having all those typical physical characteristics that told me that this young man shared the same diagnosis as my son. I crossed paths with this family for maybe 30 seconds, but by the time I was 20 feet away from them, I was choking back tears.
Nothing sad was happening in this little family. Nothing hard or out of the ordinary was going on. Nobody was paying them any attention but me.
But it turns out, I was the problem. I got choked up because of me. Because of my reaction. Because of what was going on in my head.
And while I have been hesitating for days to put these thoughts into words, I decided today that I needed to. This is where I write about these things. It's hard to bring them up in conversation. The sadness and the pain just seem too heavy to drop into conversations. I don't know how to talk about it with anyone besides Travis. So I hide behind my computer and share my stories here. But that's okay, I think. You've told me you appreciate my honesty, so that's what I'm going to do. I'm going to be honest, even though it makes me so unhappy and sad to admit to this.
Because, as much I would like to tell you that my reaction to seeing this young man was to instantaneously see his worth, the truth of the matter is that it wasn't. I was mean and judgmental and in those first 5 seconds of seeing and recognizing him, I failed to see the beauty in his life. In his existence. All I saw was: he's different. He's walking funny. He's shaped funny. I can't understand what's he saying. He looks stupid.
Oh, how it breaks my heart that I thought those things. "He looks stupid?" Oh, Tori...how could you?
I swear it was only for those first 5 seconds. Maybe even less. And then it clicked. His feet are turned out because his joints are looser. He's short and compact and carries his weight in his lower half. His neck is thicker. He's speech isn't clear and he looks like he's not engaged because he has low muscle tone in his face. He has Down Syndrome.
And then I smiled. "Hey look," I thought, "He's a Sam! He's one of us!"
I watched his family closely for the next few seconds as I walked on towards the baby section, noticing how he was able to point out to his parents which check out lanes had the fewest people, and which one he thought they should go in. He was walking and talking, two things I desperately want for my own son right now, and here was someone who had mastered both of those things. "We'll make it here, too," I thought. "It's all going to be okay eventually."
But then I kept walking, and those first 5 seconds where I didn't see this man as the beautiful testament to all the challenges he's conquered replayed in my head, and caused my eyes to well up. I am that thing I am most afraid of about Samuel's future. I am that person who knows better, but still has a gut reaction that doesn't place value on my son.
I can't tell you the number of individuals I have judged and dismissed as being "different" prior to Samuel coming into our lives. I don't even know if I could have told you I was doing it, it was so subconscious an action. I know I am still guilty of it. Of looking at people and focusing on how we are different, instead of how we are alike.
I'm sad because I know better. I am 18 months into this journey and I have no excuse. I didn't have an excuse 19 months ago, either...but I should know better. I should know better now. Who knows what that family has faced? Maybe he has a scar down his chest like my little boy does. Maybe he spent months and months learning to do things his siblings accomplished without even trying. Maybe he's had countless hospital visits because simple colds that barely phase typical kids can land kids with DS in the hospital for a week.
But even if they have faced none of those things, this young man deserves for me to withhold my judgment and assumptions based solely on his physical appearance. Everyone deserves that. I know we don't live in a society that teaches us to value our fellow man as equals. Especially when it comes to how we look: fat, thin, tall, short, white, black, in style or out. We are taught to judge and label and shove everyone we meet into a box so that it's easier to understand where they fit in our pecking order.
There's this section in Dietrich Bonhoeffer's book, "Life Together," that I've loved ever since I read it in college. He's talking about the "discipline of the tongue" and how if we learn to tame our tongue, we "will be able to cease from constantly scrutinizing the other person, judging him, condemning him, putting him in his particular place where we can gain ascendancy over him and thus doing violence to him as a person. Now we can allow the brother to exist as a completely free person, as God made him to be. Our view expands and, to our amazement for the first time we see, shining above our brethren, the richness of God's creative glory.God did not make this person as I would have made him. He did not give him to me as a brother for me to dominate and control, but in order that I might find above him the Creator. Now the other person, in the freedom with which he was created, becomes the occasion of joy, whereas before he was only a nuisance and an affliction."
Whenever I try to explain this passage to someone without the book in front of me, I find myself waving my hand around my head, trying to show them where God's creative glory shines. That's how I envisioned it the first time I read it, like if we just stopped looking people in the eye and instead moved our gaze 6 inches north, we would be able to see God. Like our own personal invisible God-halos hovering over everyone's head.
I wish I had been looking above this young man's head last weekend. I wish I could promise Sam that people would only ever see him as an occasion of joy, and never as an affliction. I wish the same for Luke. For you. For me. That we would only ever see each other as an occasion for joy, created in God's image. I loved this passage 10 years ago when I was struggling to understand who God was, and I love it today, when I'm struggling to understand how to protect my child from a world that I am afraid will often see him as an affliction.
I spend so much of my day to day life focused on helping Sam through the milestones of early childhood: the sitting, the eating, the walking, the talking...the learning of how to navigate this world physically. For the past year, these have been my biggest concerns. It's easy to focus on this stuff and push our future aside in my mind. I just keep thinking that it will only get easier as we check off these goals. That once he's walking and talking and more independent, then maybe I will get a break and it won't seem so daunting.
But after this weekend, I don't know. It seems like there will always be another battle fight. Maybe even if it's only within myself.