Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Thursday, March 24, 2011

A Sister's Voice

My friend Solvieg (please pay a visit to her blog here ) posted this on the downsyn forum. It's beautiful. You should take the time to read it.
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I translated this from Norwegian to English, it's a piece written by Trude Trønnes-Christensen, a contribution to the Norwegian debate of whether to screen for Down syndrome or not.

A sister's voice.

Hardly any children are born with Down Syndrome in Denmark anymore. They are aborted. Norway may move in the same direction.

I have a story to tell.

How hard it is to write these words. So hard, and yet strangely easy, the words are heavy, but the heart is light.

The words are difficult, because they move into a room I want you to be touched by. There has to be power in these words, I understand that. The words are hard because they also belong to reason. And I don’t know if reasoning has a place in this.

The heart is light, because the heart just knows. That my heart belongs to my brother.

So how do I start?

What is this? Is this a battle speech? A party font? A sentimental story of a sister who stands up for her brother?
Maybe it’s all of this and maybe it’s not that either. Maybe it’s just me raising my hand, asking to be heard. Because I have something to tell.

I have something to tell you about a brother born in 1972, with stubby fingers and small neck, with sparkling eyes and a cute little mouth, and Momma saw immediately that he had Down Syndrome. He was named Stian.

Momma can tell the stories about the grief over what didn’t arrive, the joy of what did, the ladies who crossed the street when she walked down the sidewalk with the stroller, all the meetings, the decisions, the battles and they great mother’s love one feels for a child who needs more protection.

I can tell the sister story.

The sister story is beautiful. It’s also sore. Which is why it’s strong. Because through all the soreness, it’s beautiful. It’s like life itself.

The sister story carries bids of soft hands stroking through the sister hair, of strong arms that pushed away. Of a little big brother who took up so much space that sister some times thought there might not be room for her.
It’s a story of a brother who filled a house with so much love that some times I felt that now I’m overflowing with happiness.

A family can be each other’s mirrors, and I mirrored him. My brother who laughed with joy over the little things, like a new Donald Duck magazine on a Tuesday, like a trip to the swimming pool, like locking Daddy out on the porch on a cold winter’s day and Daddy was pretending to be angry and brother’s shrieks of joy reverberated through the house. Stian would spin with joy over winning a soccer game on a cool summer’s day in the back yard, and he would clap his hands over the hot dogs that were placed on the barbeque, he would stand over them and clap his hands, while the rest of us would just lie on the grass and wait. An ability like that also opens up the possibility for anger.

Stian was angry. So angry that he immediately identified with Sinnataggen (http://daisy.sodor.no/generated/2/2/9/22989_ny_sinnataggen_.jpg) in the Frogner Park the first time he saw it. Because if Stian got angry, he could be som angry that time stopped and the birds got quiet and the big spruces that were standing close to our house, pulled back a tad. And I, sister, walked out of the house and took a break.

The sister story also contains pictures of children who weren’t nice to Stian. Who pointed their fingers and laughed, whispered mean words in his ear, held him back and mocked him. Stian who winced and made himself small before he tore lose and ran.

But there were nice people meetings, too. Good friends, good neighbors, good moments. They outnumbered the bad.
Good people meetings, like the first time I met another sister, when we immediately understood each other, when the untold could remain untold, we had something not spoken laying over us, just like a veil of silver threads, and we knew that we had something nobody else had. And here I am able, as an adult, to go in, translate and name it empathy and responsibility and human knowledge, but I thought the experience of a silver veil says so much more, because a lot may work out the empathy and responsibility, but only something unique can produce silver veils.

Stian, my Stian, the only one, and how, my dear brother, will I manage to communicate your infinite value and great importance to this world?
When the world doesn’t want you?

Do I show them my heart? The heart that is yours?

That through my sisterhood to you has grown strong and warm and open.
Strong, because it has been close to a being that needs strength. Warm, because it has received endless love. Open, because it has witnessed a life that sees the world from a different viewpoint.

How do I convince the world that we need you?

Convince the world that we can’t just cut this piece of life away, as life has always been like this, through thousands of years of fully lived human lives?
Stian, you are life, the way it should be. The way life is.

Today, Stian is a grown man. He is the uncle of my children and my husband’s brother-in-law. An uncle who doesn’t say much, he’s a man of few words. He is grown and calm, and it’s been a long time since the birds were scared.
Uncle Stian, my children say, and give him a hug when they walk past him. Do you want to do a puzzle, uncle Stina, they say, and he nods and lays down on the floor, the grown man, and puzzles like he’s never done anything else. Uncle Stian, would you like a cookie, they say, and laugh as he’ll rather have two. He laughs back, and there, if I could have lifted this out in front of you now, you would see a tab of the silver veil, of magic, of communication so finely tuned and beautiful as a piece of music composed by tones you think you’ve never heard before.

But we have heard these tones before.

They have been part of human kind, of our lives as long as we know of, and I know that they do something to us.
They touch us and challenge us to be something that we could otherwise not have been.
They give us something that we could have otherwise not have been given.
To cut this away, cut this piece of life away, by denoting children with Down Syndrome an abortion possibility, is scarier than I think we can understand. Someone wants a medically oriented debate, or a debate on the right to make your own choice. I am tired of it.

I am tired of reason talking of burdens, costs, challenges and strains too hard to handle. That one has to be allowed to escape.

No, we shall not escape.

Maybe reason has no place here. Some things can only be comprehended by the heart. Love can only be comprehended with the heart. As can life. Stian is life, Stian is love. Stian can only be comprehended with the heart.

I have something to tell you.

I have to tell you that now is the time to use the heart.

Full article with pics here: http://www.aftenposten.no/meninger/kronikker/article4058683.ece

1 comment:

Syncopa said...

I'm glad you liked it, Leah! It's such a great piece, and we actually read it to our other children for World Down Syndrome Day. Our oldest daughter nodded through the whole thing; I think it hits a good nerve within anyone who has a sibling with DS.
Thanks for sharing this with the rest of the world, Trude Trønnes-Christensens voice and story needs to be heard all over.