A Change of Heart

Dear Alicia,

The first time I met you was about six years ago, at the town pool.

I was the mom with the five kids and the big bag of towels spilling everywhere. I think my youngest son, Henry, was crying because I forgot to bring money for ice cream.

But even with all the chaos of the kids and the towels and the crying, I noticed you. I noticed your big smile and how cute you looked in your purple bathing suit. I noticed you had Down Syndrome.

Before I met you, I thought Down Syndrome was spelled like this: Down’s Syndrome. That’s a little embarrassing for me to admit to you, but there you have it.

October is Down Syndrome Awareness Month.

My son Jack—you remember Jack, don’t you? From the pool? He’s the one who got really mad because he didn’t want to wait for me before he jumped into the water. Well, Jack has a month, too. It’s April, for his autism.

I know very well how to spell autism.

No one seems to know what causes autism. People like to blame vaccines and pesticides and asbestos and even the pancakes we eat because of all the gluten.

But do you want to know a little secret, Alicia? I think Jack was born with it, the same way you were born with Down Syndrome.

For nine months you curled up in your mother’s belly, all safe and warm, while your DNA worked it’s mysterious magic.

The doctor broke the news to your mother and your father. He explained their new baby had a disorder, and it would result in a wide range of developmental delays and physical disabilities.

Gently, awkwardly, he told them a familiar story about a man and a woman who were planning a trip to Italy. This man and woman bought guidebooks, they learned Italian. Together, they talked about all of the fun, exciting things they would see and do and eat and learn.

At the last minute, the plane landed in Holland. No, wait! The man and the woman protested. We were supposed to go to Italy! All of our lives, we’ve dreamed of Italy!

But Holland it was. The destination could not be changed, because there is no cure for a genetic detour.

Your mom sat quietly in the hospital bed, but your daddy, well, your daddy wasn’t interested in some weird story about international travel. He had never been to Holland. He didn’t want to go to Italy.

He was sad, and shocked. He sank down into the chair, heavy with the heartbreak of an extra chromosome and an unexpected girl.

They named you Alicia Nicole. They had a hard time agreeing on what to call you, and before you were born they spent a lot of nights tossing names to one another like two tennis players lobbing the ball over a net.

How about Julia for a girl?

No, I don’t think so.

Or Elena?

No, I knew an Elena when I was a kid.

Alicia?

Hmm. Alicia.

Alicia. Yes.

But from the moment they brought you home from the hospital, they called you Lici, and Lici-loops. Sweet-pea, Petunia, Buttercup, and Pumpkin.

It was a tough first year for your parents. They bought the books and read the articles and met with lots and lots of specialists. They learned a new language of words like hypothyroid, nystagmus, and selective mutism.

Then, at five months, you had congestive heart failure. A few weeks later, your mom and your dad watched—desperate and afraid—as doctors wheeled you away on a gurney for open-heart surgery.

You’re thirteen now. You don’t like the nicknames anymore. “It’s Alicia!” you tell them. “Just Alicia.”

You want to work in a restaurant, and you love gym class and music and television.

You play for the Special Olympics bowling team and won the gold.

You hate soda.

As you get older, your mom longs to wrap her mother-wings around you and keep you safe from the world—safe from girls who are mean and boys who tease. But she knows that isn’t possible. She knows she has to let you find your way.

One in every 691 babies in the United States is born with Down Syndrome.

One in every 88 babies it the United States is born with Autism Spectrum Disorder.

Scientists spend a lot of time trying to figure out why people are born this way. They conduct research and take surveys and try desperately to understand the phenomenon behind the diagnosis.

This is good, Alicia. Science is good. But it can only do so much.

Science cannot begin to capture the heartbreak, and loneliness, and apprehension of a surprise destination.

Science can’t dismantle the stereotype that people with Down Syndrome are always happy and kids with autism hate to wear clothes that have tags.

Jack couldn’t care less if there’s a tag on his shirt.

And you, well, you have all sorts of feelings; sadness and madness and fear. You can be sarcastic, and funny, and angry.

Underneath it all you have a quiet shyness—a vulnerability that keeps you from seeking kids out on the playground or in the cafeteria.

Science will never tell us who you are.

You are resilient. You are a fighter, and a healer, and a top-notch bowler.

Your heart is perfect and pure.

You, Alicia, are cool, crisp October with its colorful leaves and bright orange pumpkins. Jack is soft green April, with wet, dewy mornings and newly budding flowers.

Yet a diagnosis is without season. It is December through May, and all summer long. It is forever.

I guess you could say it’s like a house, with sturdy walls and a strong foundation. There is a roof for shelter and windows for light.

Inside of the house, a man sits in a chair and rocks his baby girl very carefully, because he does not want to disturb the long, thin scar that zig-zags across her tiny body. He kisses her cheek, he sings to her.

And as both of their hearts begin to heal, he bends down and whispers in her ear.

Welcome to Holland, my sweet petunia.