Happy World Down Syndrome Day

In honor of World Down Syndrome Awareness Day I’m reprinting this post that I wrote about my brother Noah over on Squashed Mom a few years ago. I don’t write about Noah for many reasons, for one he is 17, he’s a grown up and the hero of his own stories. Also, writing about Noah is hard. It’s hard to explain the frustration of loving him. And I don’t want to be overly sentimental and gloss over the reality of what his life is. It’s too easy to put people with disabilities into a box where they are angels, perfect, misunderstood blessings from God. And while he is those things, he is more than that. And I don’t want to deny him the full power of his personality, of all he is, both good and bad and funny and sweet. He is my brother, he is human. He has flaws. But he is also special needs. But he is also, just Noah.

Do you see what I mean? It’s difficult.

Noah at Christmas. He is really cool and loves Minions. This picture was taken by my 6 year old nephew who is better at pictures (and most things) than me.

Noah at Christmas. He is really cool and loves Minions. This picture was taken by my 6 year old nephew who is better at pictures (and most things) than me.

I have seven siblings. One is perky with curly hair. One is hilarious and likes to play with legos. Two are good at art. One dedicates her life to serving others. Another dedicates her life to giving people great hairstyles. I have a brother who is in the Army and can run a mile in six minutes. I have a sister who is the best message therapist I’ve ever met. She’s also the most sarcastic person I know. And then there is my youngest brother, Noah.

Noah loves to snuggle. He loves to watch Toy Story and collect army men. He once got kicked out of school for dancing on a table. He also got kicked out of school for yelling at a teacher. Noah is sweet and a little spicy. And among the many things that he is, Noah is also Downs Syndrome.

But it’s a little more complicated than that. Noah also has other disabilities. He is 17 and he doesn’t talk much and still has a hard time going to the bathroom by himself. And as much as I hate it, those are the things that define him to most people.

To most people, Noah is not my brother who got kicked out of school. He’s not my brother who carries around a Sheriff Woody doll. Or the brother who gives the best hugs. To everyone I meet he is Noah my disabled brother.

But to me and my siblings he is so much more.

My brother Noah was born on June 12, 1997. He was three months early and was so small my dad could hold him in the palm of his hand. But my dad didn’t do that. He carried him with both hands, cradled against his chest, while all seven of us siblings circled around so happy that Noah was part of the family.

Two weeks after he was born were told he had Downs Syndrome and six years later, we would find out that he also suffered from additional complications that meant he’d never be able to hold down a job or live on his own.

I was thirteen when Noah was allowed to come home from the hospital and I would often sit by his crib, watching him breathe. Making sure he was okay. When he woke up, his blue eyes would watch the ceiling fan circle round-and-round his head.

Maybe he will make fans one day, I thought before remembering that the doctor had said he may never have a career. I ran downstairs and crawled into an old sleeping bag, hiding my tears and my horrible thoughts. It doesn’t matter how good he is, no one will give him the chance.

Before Noah was born, I had known a girl with Downs, her name was Janna, and every time I saw her she would tell me about her boyfriends. “I kissed them!” she would yell and I would sneak away. “Go play with Janna,” mom insisted. But I hated every minute of it.

I hated the way she smelled of mothballs and body odor. I hated the way she laughed at everything and hugged me. I hated that she was twenty and could barely read. Most of all I hated the way people looked at her as she loped along, oblivious to their scornful stares.

I didn’t want Noah to be like that, but most of all I didn’t want to think of him like that. I fell asleep in the sleeping bag and woke up to my mom kissing my forehead. “It’s okay to be mad,” she said. “I know you love him.”

And that’s what it is to be a sibling of someone with special needs—you exist simultaneously in a place of love and acceptance and frustration and guilt. But I wouldn’t ever choose anything different.

I’m older now and so is Noah. But I still get angry. I get angry when I don’t know how to talk to him, when I have a hard time understanding what he wants. I get angry when he comes for a visit and then leaves and I feel like I didn’t get a chance to tell him that I love him and what he means to me. And I know he gets frustrated too.

One by one, his brothers and sisters are leaving home and leaving him. He uses sign language to tell my mom to call us. And when he sees us, he just wants to sit and hug. And I do sit and hug him, but it’s never long enough and that makes me mad too.

Noah is so many other things. He’s the kid who tried to flush the dog down the toilet. He’s the kid who can eat his weight in Cheetos. He’s the brother who influenced one of my sisters to become a teacher and another to become a social worker. He’s the brother that taught me patience.

He’s also just Noah, my brother.

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