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I Used To Think Down Syndrome Was a Real Jerk

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Dear Down syndrome,

I thought you were a real jerk when we first met. I mean, you just showed up at our house uninvited. We had plans and ideas, and you were not part of them. But you wouldn’t leave. We cried, prayed and begged for you to go, but you refused. I was familiar with you, but we didn’t know each other that well. We knew some of the same people. You seemed nice enough, but I never wanted to know you intimately. Nevertheless, there you stood, in my living room, bedroom, my dreams. You were the constant passenger in my car, you sat at my desk and walked with me… everywhere. At times I would forget you were there until I turned around, and there you were. I’d cry silently to myself for you to just disappear. But you stayed.

Elsa and Anna

Although we eventually accepted your existence, we didn’t like it. I’d smile and pretend to like you. But I would still think to myself, Who do you think you are? How dare you show up and turn our lives upside down. And you did. You brought fetal hydrops, and that almost killed our daughter, and then you brought duodenal atresia. She had to have surgery when she was born and then had three subsequent surgeries. So you didn’t just show up uninvited, you brought friends. And that’s a real jerk move.

the girls

Truth be told, some of my closest friends are people I didn’t like at first. I gave them a chance. I started a conversation, smiled at them and warmed up to them. I saw them for who they really were, not what others thought they were. We had to give you that chance.

We began to believe in you, care about you and defend you. We told doctors they were wrong about you.

You didn’t just bring the hydrops, you gave our precious daughter the strength to fight it. You put those sparkles in her blue eyes. And even though she looks like her daddy and smiles like her mommy, I see you in her chubby cheeks as they vibrate from her laughter. I see you shining in her friends. They all know you. We all know you now. You float like an angel throughout a crowd of children and adults who are all familiar with you.

Down syndrome, I’m so sorry we didn’t understand you at first. Thank you for being patient with us. You’ve brought a love and life to us we would never have known had you not come into our lives. You’re not just welcome here, you’re a proud member of our family.

Originally published: March 23, 2015
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