Night Time With My Daughter With Down Syndrome


It’s night time. My daughter, Hannah, and I lay on the recliner; she watches the stars on the ceiling and I watch her. The light from the Twilight Ladybug reflects on her porcelain skin: red, green, blue. Her eyelashes flutter with each slow blink and her wispy, baby-hair bangs sweep across her forehead. The look in her eyes is a mixture of comfort, contentment and wonder.

I keep staring, amazed by how much her face has changed since she was an infant. Pretty much everything about her has changed since she moved to the toddler room at daycare. I think about how there are times at home when Hannah refuses to let me be out of her sight. She hunts me down, then insists on being on my hip or on my lap. Sometimes knowing where I am isn’t enough. Mixed in will be moments of the fiercest independence, the most sincere amazement, and the sweetest self-praise. She’s a full-fledged toddler now.

 

I imagine Hannah’s life must be confusing at times, yet she seems calm. Her family, teachers and therapists trying to teach her to take care of herself and make decisions. Those same adults saying variations of “no” all day: “Sit at the table but don’t put your feet on it.” “You can throw a ball but not your cup.” “Eat this food but don’t put that in your mouth.” “Be a big girl but don’t be too big, too fast.” It’s no wonder toddlers throw tantrums.

I don’t consider myself a patient person, but I give Hannah every ounce I can. She’s navigating a world that I’m a stranger to as well. I slowly gave up on idealistic plans like no television, vegetables at every meal, Pinterest-level crafts and games every night. Now we have “Sesame Street” or nursery rhyme videos on almost every night; she ate vanilla pudding for dinner last Friday, and sometimes we play for an hour with just a baby wipe. It can’t be that bad when she’s learned dance moves from “Sesame Street,” self-feeds the pudding with a spoon and likes to clean our floors with the wipes.

And as we lay in the recliner I think, “She’s absolutely gorgeous.”

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