January 15, 2013

Taming of the Tongue

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.


  1. You can't be so hard on yourself, V. I'm sure every day is a struggle that presents new and different challenges, and you can't expect yourself how to know how to handle every one of them. I also think you are very brave and honest to post this, as I'm sure there are so many Downs moms out there thinking the words you write but too afraid to say them.

  2. It is a solo journey we all travel. We stumble, have random unkind thoughts, words, deeds, we struggle, but we learn, regain our balance and grow more tolerant and seek to accept and be accepted. Don't beat yourself up (too badly or too much) even though you will again, and guilt, well that is an emotion that takes up too much time and energy. You are what many could not be even if not by choice but by circumstance and if offered a choice your circumstance would remain. It is apparent in your unconditional love you express in your writing. It outshines fear, shock or horror at random thoughts you may have or worse that others may have for you. Love conquers and your love for your child conquers most of all.

  3. Victoria, I hope you know that, even though you may have 5 seconds of accidental judgement, you have helped change my thoughts so I am much less judgmental. Before becoming educated about Down syndrome by you, I just never fully knew. Now I know that a person with DS may appear different on the outside, it's because of physical limitations. I know, because of what you have taught me, that low muscle tone on the outside doesn't change their mental capabilities on the inside.
    Through your struggles, I hope that you can keep in the back of your mind that you and Sam are impacting other lives in such a positive way.

  4. Beautifully written with such raw truth and also some wonderful grace. I love the image of looking for the halo/glory of God above each person. So perfectly put! I pray that I can be better at seeing the halos on others.

  5. Those of us who deal with 'internal' disabilities (depression, phobias, autism, emotional and mental disorders, etc) can hide behind a seemingly normal appearance but DS is one of many disorders with physical traits that are pretty easy to identify. You and other families affected with DS are relentlessly confronted with the physical identity of your loved one's disorder, not just the emotional. Your strength and honesty are humbling and continually remind me of the supreme value of compassion.

  6. Tori,
    Travis was our intern at Messiah Lutheran in Mauldin, SC. When Sam was born, I immediately thought of my older cousin, Karen who had Downs and her parents and their life journey. Every time I think of Karen, one word comes to mind, BLESSING. I think God chose my Aunt and Uncle for Karen as I think he chose you and Travis for Sam. Although I am sure many days do not feel like it, you are a blessing to Sam and he to you both. When Sam was born, I contacted my Aunt to let her know of Sam, as she attends church across the street from you and lives in Cornelius. She wanted me to let you know that she would love to talk with you anytime and share with you the blessings she and my Uncle lived. I tried to forward contact info. onto Travis via Facebook, but my Aunt rarely gets on FB anymore. Should you ever need or want to talk with my Aunt Jean Foster, here's her home number: 704-439-1277. You are not alone! Peace and blessings be with you all and thank you for your gift of writing and sharing your heart, which is precious. Renee

  7. It's sometimes a shame that our first instinct is to compare/contrast with other people. In that light, we often measure what the other person is lacking or where they are failing or where we can do better than them-- based on our own experience. The other approach that you so beautifully described praises a persons abilities, potential, and fundamental existence as a son or daughter of God. While I suppose it's natural for me to want people to receive the same kind of blessings that I enjoy, I shouldn't discount that they are still blessed. I think your words arrive at that conclusion, too: that value is independent of stature, intellect, wealth, or beauty. My faith leads me to understand that God wants all of his children to succeed and will help us through whatever difficult conditions we are born.

  8. Your honesty is awesome, and I think you must have looked inside my head! My daughter is now 17 and I still have these moments from time to time. I still compare, look back, look forward. But we all do the best we can as parents and as who we are at the time. Recognizing this and moving ahead is the key.

  9. wow. I loved this post! I come by way of Love that Max and I just had to click on your post. I have two kids on the spectrum and have many days like this. I enjoyed your port, your honesty. We have to say stuff like this, voice it, no matter how taboo it is Thank you so much, following ur blog now.

  10. I wrote about something similar a couple of months ago. I didn't judge another person/child. I judged Boo. I think it is human nature. Just like when you may see another child with Down Syndrome who has a more severe disability and think, thank Goodness that isn't my child. It doesn't make us horrible people. Just ones that have a harder row than most. You are doing the best job you can. And if you cannot vent/be honest on your own blog where else can you? Other people who haven't been down this road just do not get it sometimes. No matter how hard they try!

    Found you via love that max, and so glad I did.

  11. You know, there's no timeline for how you *should* feel, or how you *think* you should feel. We have all been there, and it honestly takes time. I was quick to accept my daughter's diagnosis, but it absorbed me for the first few years of her life. Now, nearly 7 years into our adventure, my life is more consumed with school and all the wonderful things my daughter is doing and learning, not about Down syndrome (although my blog touches on it a lot!). Let yourself think what you think, feel what you feel, for as long as you like. I love how you were able to see past it quickly, though, and see a bright future. ;-)