Seven right words
There are many wrong words:
Retarded
Disabled
Down's child
Normal child vs. ???
Some of them involve exchanges like this one--
We walk into a place of business and the receptionist says, "He's so cute."
"Thanks," I smile.
She follows: "My sister's son is four, and he just learned to talk in full sentences." Pregnant pause while I try to figure this out. And then the light bulb in my brain clicks on.
"Oh! Does he have Down syndrome?" I ask.
"Yes. And she has a younger son, too. So it's like having two one and a half year olds."
Well, no, I think. It's not. It's like having a four year old and a one year old. But OK.
I know people mean well when they share their stories that they think are like ours, and they start the conversation with things like, "Oh, he was a Down's, too." And Mark isn't bothered at all by these words that spark a small forest fire in my gut. The thing is, the wrong words, they don't tell our story or the story of the person you know who has Down syndrome with any kind of clarity. They tell it slant as Dickinson would say. They may be true words, but they are not the right words or the best words.
The person you know with Down syndrome is a person first. Think of how you would be described if we listed your greatest challenge at the front of your title. "Who do you mean? Oh, that's right, the bad-breathed woman. I know her." or "Hey, I know a short person, too! I bet you're a lot alike! You should be friends."
I try not to let these things bother me. I do. But I'm a word girl. Words have power. Words shape our impressions of reality, and they express our version of reality. These words? They aren't words that describe me or us or my son.
My sister Kait sent me a link to a song last week called "Where Feet May Fail". Wow. I reached for my son and I held him close and we danced around the kitchen while I sang to him I am yours and you are mine. Seven right words. And the words I sang were praise--to a God who whispers this in our ears every new day. And they were a promise to a son (who might look different, and talk differently, and move differently than you and me) who holds my heart just as fierce as your typical child holds yours. I am his and he is mine. He patted my face where the tears were staining and peered at me out of those almond-shaped eyes that see more than a heart-shaped mouth can say.
There is no sadness in a moment like this. None for myself. None for my son. The sadness I feel is for others, names and faces I don't even know, who have never heard these seven right words. Who have never known a love that says I am yours and you are mine.
And so we practice those words (imperfectly) every single day. We practice them in our actions more than our speech. And the shape of those words is round and full and beautiful. And they belong to all of us. If you haven't claimed the deep and lovely and bottomless truth that saturates the seven right words--Do. And if you haven't lately whispered those words into the vulnerable ears of your greatest treasures--Do. They are the only words, the only ones, with the power to cover all the wrong ones.
I am yours. You are mine.
(It's National Down syndrome Awareness month. Feeling so grateful for all that means to us.)
Retarded
Disabled
Down's child
Normal child vs. ???
Some of them involve exchanges like this one--
We walk into a place of business and the receptionist says, "He's so cute."
"Thanks," I smile.
She follows: "My sister's son is four, and he just learned to talk in full sentences." Pregnant pause while I try to figure this out. And then the light bulb in my brain clicks on.
"Oh! Does he have Down syndrome?" I ask.
"Yes. And she has a younger son, too. So it's like having two one and a half year olds."
Well, no, I think. It's not. It's like having a four year old and a one year old. But OK.
I know people mean well when they share their stories that they think are like ours, and they start the conversation with things like, "Oh, he was a Down's, too." And Mark isn't bothered at all by these words that spark a small forest fire in my gut. The thing is, the wrong words, they don't tell our story or the story of the person you know who has Down syndrome with any kind of clarity. They tell it slant as Dickinson would say. They may be true words, but they are not the right words or the best words.
The person you know with Down syndrome is a person first. Think of how you would be described if we listed your greatest challenge at the front of your title. "Who do you mean? Oh, that's right, the bad-breathed woman. I know her." or "Hey, I know a short person, too! I bet you're a lot alike! You should be friends."
I try not to let these things bother me. I do. But I'm a word girl. Words have power. Words shape our impressions of reality, and they express our version of reality. These words? They aren't words that describe me or us or my son.
My sister Kait sent me a link to a song last week called "Where Feet May Fail". Wow. I reached for my son and I held him close and we danced around the kitchen while I sang to him I am yours and you are mine. Seven right words. And the words I sang were praise--to a God who whispers this in our ears every new day. And they were a promise to a son (who might look different, and talk differently, and move differently than you and me) who holds my heart just as fierce as your typical child holds yours. I am his and he is mine. He patted my face where the tears were staining and peered at me out of those almond-shaped eyes that see more than a heart-shaped mouth can say.
There is no sadness in a moment like this. None for myself. None for my son. The sadness I feel is for others, names and faces I don't even know, who have never heard these seven right words. Who have never known a love that says I am yours and you are mine.
And so we practice those words (imperfectly) every single day. We practice them in our actions more than our speech. And the shape of those words is round and full and beautiful. And they belong to all of us. If you haven't claimed the deep and lovely and bottomless truth that saturates the seven right words--Do. And if you haven't lately whispered those words into the vulnerable ears of your greatest treasures--Do. They are the only words, the only ones, with the power to cover all the wrong ones.
I am yours. You are mine.
(It's National Down syndrome Awareness month. Feeling so grateful for all that means to us.)